Cruising Clean: Your Ultimate Guide to Shipboard Hygiene –The holiday season is upon us…Yayyy. We are talking about our holidays, where we are going or where we have booked to go. I’ve noticed cruising is a popular holiday this year and many people are discussing how best to keep safe (hygiene-wise) while on board a cruise ship.
Being in an environment like a cruise ship, ensuring health and hygiene remain intact is crucial for many disabled people and people with health issues. It’s a vital part of many of our daily lives. I share some insights and practical tips on how to stay healthy and hygienic while cruising the open seas.
Why Is Hygiene Important?
Good personal hygiene is vital because it helps stop you from getting sick. It also helps prevent you from spreading germs and infectious diseases. Poor hygiene can cause people with different disabilities/health issues to become susceptible to infections, skin issues, and other health complications. People who are immunocompromised are more vulnerable to infections, and illnesses. Even minor pathogens that might be harmless to others can pose severe health risks.
This becomes just as important for people who are going through certain health treatments like those being treated for cancer. Cancer treatments such as chemotherapy and radiation therapy often weaken the immune system, making patients more susceptible to infections and other complications.
Germs can be transferred in many ways, here are a few:
Touching other people
Getting faeces (poo) or other body fluids on your hands
Handling contaminated food
Coming into contact with dirty surfaces or objects
Poor personal hygiene can cause many different conditions like:
COVID 19and other infectious diseases
Diarrhoea, especially Gastroenteritis
Respiratory infections, including colds and flu
Scabies
Athlete’s foot
One way to have good hygiene is to wash your hands regularly, especially after going to the toilet and in other situations:
When should I wash my hands?
When they are obviously dirty
After touching rubbish, dirty surfaces or objects
Before and after preparing or eating food
After blowing your nose
After handling pets or animals
After changing a baby’s nappy
Before and after visiting someone who is sick
After cleaning up vomit or body fluids
Before and after treating cuts or wounds
I’m sure we are all familiar with how to wash our hands after the many advertisements on this during Covid, but just to make sure:
How do I wash my hands?
Wet your hands with clean water.
Apply enough soap to cover all surfaces of your hands.
Rub your hands together for at least 20 seconds.
Clean between your fingers and the backs of your hands.
Clean dirty fingernails with a nail brush.
Rinse both sides of your hands with clean water.
Dry off your hands with a clean towel.
If you’re in a public bathroom, use a paper towel to turn off the tap.
If you’re unable to get to a sink or soap and water isn’t available, you can use hand sanitiser. Just remember, your hand sanitiser should contain at least 60% alcohol. Rub the sanitiser over your palms, the backs of your hands and in between your fingers. Keep rubbing until it is dry.
Ship Hygiene
With cruise ships getting bigger and bigger, passenger numbers are rising too. I’m off on a cruise later this year and the ship I’m sailing on has up to 3,200 passengers alone, this does not include the amount of staff on this ship. This means you will mingle with many other people while aboard the ship. So hygiene is extremely important.
Your Cabin
I’m not saying your cabin is dirty, they of course are cleaned before you arrive. However, with the amount of cabins that the staff have to clean, things can get missed.
Antibacterial wipes are great for wiping down surfaces, sinks, shower and toilet seats.
I normally take my own hangers, that way I don’t have to wipe the ones supplied. Plus you’re never supplied with enough anyway.
The remote control to the TV, a big hoarder of germs. This will definitely need wiping down.
Around the Ship
Tissues are great for when using door handles, stairway handrails and lift buttons around the ship as these do see a lot of traffic.
Casino – Do you like to have a little flutter? If so, be sure to take antibacterial wipes with you to use on the slot machine handles/buttons. Obviously, you can’t wipe down every single casino chip you may handle, so be sure to have either hand sanitiser with you or when you have left the casino wash your hands thoroughly.
The pools – Loungers/chairs may not be as clean as you may think, you can either have a really big bath towel or give them a wipe down. Again, be sure to wash your hands if visiting food areas when moving from the pool area.
Toilets – If you can, use your cabin toilet.
Masks – If you do come down with a cold or feel sneezy, wear a mask in public spaces and help protect others.
Top tip: Be the first ones to use the hot tub/pools first, after they have been cleaned.
Eating On The Ship
Many of the restaurants have waiter service. However, there are some self-service, buffet-style restaurants. In these restaurants, is where hygiene would play a bigger role. For example:
Wash hands before entering any eating area
In the buffet-style eateries, use a tissue when using the tongs to pick up the food. Or let the dining staff serve you if available.
Wipe down your table with antibacterial wipes
Water – Drink plenty of water, especially in hot places.
Top tip: When travelling abroad, be sure to check if the water is safe to drink as in some countries it’s not advisable.
Cruising is my favourite way to holiday, check out my Cruising as a wheelchair user blog and my Cruising tips for accessibility As a full-time wheelchair user, I find it the most stress free way to holiday. I highly recommend doing a cruise if you can.
I hope you have found these tips helpful and if you are cruising this year, happy and safe travels.
Toxic Behaviour By A Charity Trustee With No Board Intervention – I applied to become this disabled charity’s next secretary in a non-paid role. The treatment I received from the secretary was shocking, to say the least. I was manipulated, video-called morning, noon and night to the point I felt like I was being stalked. These calls mostly consisted of the secretary giving out to me about the charity, and trustees and breaking confidentiality and GDPR by divulging personal information about present and past trustees! The board just sat back and did nothing. It took a formal complaint to get the board’s ass in motion!
Application To Become Next Secretary
February 2023 – I submitted my application to this charity in response to their advertisement for a new secretary. The initial stages seemed promising, although I perceived the application process to be rather informal. There was no requirement for completing an application form or detailing my skills. These elements one would typically anticipate when applying for a position of such responsibility.
Following a series of video calls with the secretary, it seemed I was being offered the role. Seeking clarification, I pressed for confirmation. The secretary confirmed my assumption, stating that I had secured the position, and mentioned that nobody else had applied anyway. While she would personally train me for the role, she confirmed I would have to officially be voted on by the members at the next AGM meeting in October 2023.
Over the next few months, I found myself receiving daily video calls from the secretary, most days, consisted of more than one a day. While I expected these calls to be related to my training, they primarily revolved around her venting about her issues. This included expressing frustration with the rest of the board’s perceived incompetence, and claiming that she had to handle everything. I was also shocked that these conversations also included inappropriate disclosures of personal stories involving other trustees and members. Breaching Data Protection regulations, something as a trustee she would have been entrusted to uphold.
In-Person Training
May 2023 – I underwent in-person training, which required a three-hour drive to her location. We spent the next two days at one of their local pubs that contributed to the charity’s fundraising efforts. At lunch, both my husband and I expressed we would be covering our expenses. However, we were informed that, as part of charity tasks, all trustees were entitled to a contribution of up to a certain amount for meals. Despite our protests of how we were not trustees and insisted on paying for our food. We were repeatedly told (sternly) that the charity would cover the cost. To avoid conflict or creating an uncomfortable atmosphere, we reluctantly accepted.
It was at this in-person training that the conversation of the charity’s website first came up. It was explained how the charity was paying a lot of money for their hosting etc. Me being me, offered to help if the charity needed it. The rest of my training consisted of being shown how to sign in to the different charity accounts and I was sent home with a list of all the log-in details and 16 boxes of charity-related literature that we picked up from their lock-up on our way home.
Video Calls
I was already receiving several video calls a day. Which at first, didn’t seem too intrusive as they were about the secretary role. Unfortunately, they went downhill very rapidly. The conversations, consisted of her moaning and giving out about one thing or another and me listening. I got the history of her life, family, and ex-partners, specifically a story about 2 ex-trustees one of which she accused of “stealing her boyfriend”. Child protection issues of a relative. Then she would constantly moan about how terrible the charity was and how all the other trustees were useless.
Then the calls became very ugly! The secretary told me many stories about other trustees past & present including names and specific details. These stories were both very personal and accusatory. She breached confidentiality at the very least. I believed this woman knew no bounds!
I suspected that much of what she told me was intended to influence my perception of other trustees. She appeared quite comfortable divulging personal information and expressing anger towards other trustees. How badly the charity was being run, and the incompetence of everyone involved. Watching her demeanour and hearing her speak so angrily of others made it clear that when she is faced with the slightest provocation, she gets angry and lashes out.
This concerned me and made me feel extremely uncomfortable every time she called me. This had been going on for several months now. I feared that if I pointed out the inappropriateness of her sharing such stories, this would provoke her. Attempting to discuss matters with other trustees would result in her directing her anger towards me. I didn’t want to find myself at the receiving end of what I was witnessing. I felt intimidated and trapped in a situation I no longer wanted to be in.
Trustee Meeting
May 2023 – I was invited to a trustee meeting to discuss the charity website. It was in this meeting I believed an agreement had been made where I would build the charity a new website, and then host it for free on my third-party hosting package. I would also be responsible for the upkeep and maintenance of the website (alongside one of the trustees that I would train in the software). It wasn’t until 5 months later AFTER the website had been built and gone live. I was told in writing that there was no agreement in place. More on this later. I attended a few more meetings, and then everything went south!
I noticed at times when I mentioned things missing in the meeting minutes, the board seemed unphased and not overly bothered if they were rectified. The secretary always apologised but gave excuses as to why this happened. The meetings were recorded and transcribed and the secretary just copied and pasted the transcript (word for word, including any spelling mistakes), so I couldn’t understand why important parts were constantly missing. The board would complain at how the minutes were often 16 pages long but again, no one seemed to do anything about it.
Website
Believing an agreement was in place, I initiated building the charity their website. I had many conversations with the secretary and chair (who are husband and wife) about the look, feel and design of the website. The secretary put me in touch with the previous hosting company to arrange the transfer of the domain name to my third-party hosting.
Factsheets, charity policies and images that needed to be included on the new website couldn’t be found. It turned out that not one trustee knew where any of this information was or if it even existed. There were no charity policies seemingly in place, no one had the original images, nothing! This made my work extremely difficult as I had nothing to work with. Needless to say, I managed to get a website up and live within approx 2 weeks. Still lots of background work to be done but at least members and professionals had a website they could view and use.
Trustee Meeting Part 2
June 2023 – In one of the trustee meetings, things became rather heated when discussing the charity’s annual event. After this meeting, the secretary sent a very nasty email to all trustees including me. It was in this email I witnessed the secretary persecuting other trustees. She accused one trustee of not needing an accessible room at the event hotel because she wasn’t disabled enough and how she expects an accessible room now she is a trustee. She also accused all trustees of being useless.
I was so shocked by her comments, that I felt physically sick. There seemed to be no reason for her outburst. I could only conclude it was because she wasn’t getting her way. I couldn’t believe how her tone was so accusatory, venomous and abusive, especially towards her colleagues. And this was the woman who was training me for her role?
My fear of not wanting to antagonise her proved to be right. Again, I can’t go into details but when someone starts with “This will not be a pleasant email to read for certain trustees and will undoubtedly upset a few”. You can’t help but feel that person knows exactly what they are doing.
The Backlash Begins
Repeated Calls
The frequency of video calls has escalated significantly. I found myself receiving 3-4 calls a day, sometimes even late at night, with no prior notice or consent. The secretary had intruded into my daily life, creating an expectation that I must always be available to take her calls, regardless of my whereabouts or activities. This constant demand had become emotionally taxing, particularly as many calls extend for over an hour. I was repeatedly used as a sounding board, compelled to drop everything and listen, irrespective of my own priorities.
Ignoring Calls
I tried ignoring her calls but she would just continuously call me until I answered. It felt like she was purposefully trying to wear me down. (It was working). So I got to the point where it just seemed easier to answer her the first time. You know, get the call over with. It’s hard to vocalise how she invaded my life and made me feel so drained, worn out and quite frankly trapped and very worried. It was like my own life was not my own. I don’t mean to sound melodramatic but this was awful, day in, day out! In some of these calls, she would screenshot us and then plaster them on social media. Again, this showed no bounds or respect for anyone else.
On occasions, I explained how I was in the middle of something and couldn’t talk. The secretary would insist the call wouldn’t take too long or indicate it was urgent. When I took her call it would turn out neither was the case! On one of these occasions, I was in an online meeting when she tried calling. I had to pause my meeting to explain this to the secretary as the noise of the calls repeatedly coming in was disrupting my other meeting. Her response was of annoyance and inconvenience. This validated my feelings and how I felt I was at her beck and call. This was so intimidating and overwhelming. I was at a complete loss!
Continued Behaviour
I was left with no option but to now distance myself personally and try to keep things on a more professional level. Her behaviour made it clear it would only be a matter of time before I would become her next target. I was not proven wrong!
I removed & blocked her from my personal Facebook and Messenger, so no more video calls. Contact was now only via email. I assumed this angered her as she then changed all the passwords to all the charity accounts I had access to. She also removed me from the charity bank that she had signed me up to. I couldn’t help but feel how childish her behaviour had become.
Then, the secretary demanded the administrative login to the website I had been building. (This was the only account I now had access to). I explained although the website was live, there was still plenty of ‘back-end’ work that still needed completing. The charity already had access via a user account login for any tasks they may need to do while I was still working on it. So I couldn’t understand her demands. This escalated to the point where she accused me of holding the website to ransom! Really?
The secretary was not still not happy so the demands kept coming. I knew she wanted the login so she could lock me out of this account also. If this happened, who would be able to take over building the website without me explaining everything I had done? Very counter-productive. This showed her controlling personality.
No Action
What struck me the most though, is how no one else seemed to be phased by her behaviour. No one commented, intervened or anything! I had made comments in response to the secretary’s behaviour. Explaining how meeting minutes were incorrect or missing important information, how she was changing passwords, demanding FULL access to the website account and how I felt this was to lock me out of that also.
I also explained I felt she was being unprofessional, and untrustworthy and should no longer be secretary. The board just let her get on with it.
I had a couple of the trustees message me telling me to keep my chin up, and how this was normal behaviour from the secretary when she doesn’t get her way. The board never knows whether they are coming or going with the antics of most trustee meetings. I even found out how the secretary was responsible for previous trustees leaving the board because of how she treated them. At this point, I too was feeling like I just wanted to walk away but I was so excited to take on this role. I thought, well if/when I take over she will be no longer an issue….Oh boy, how wrong I was!
So the board condones toxic behaviour? Good to know!
Formal Complaint
8th September 2023 – I can’t describe the full treatment I received, (GDPR & Data protection) but this went on for over 7 months. I kept being told to hang tough, she’d be gone soon. Hmmm
Then the s*** really hit the fan! An email arrived in my inbox informing me a complaint had been made against me. I was horrified! I’ve never had a complaint made against me, ever! Of course, I instantly knew who had made this complaint. I couldn’t believe the audacity of this woman. To put me through all the crap she had dished out and then to add insult to injury, make a complaint against me.
She accused me of abuse, bullying and constant belittling remarks that have impacted her personally and professionally. Yes, I got to the point where I let the board know of her behaviour. Yes, I called her unprofessional, untrustworthy and incompetent. What else would you call a person who tells personal accusatory stories of others, omits important information from trustee meeting minutes or someone who constantly spells terribly and whose grammar is awful? When in a semi-professional role, there are such things as Grammarly, so no excuse really, is there?
Asserting that someone is incompetent and untrustworthy isn’t inherently bullying or abusive, especially if the claims are factual and supported by evidence, as I had presented at the time.
27th September – After a long time of taking everything in, I too submitted a formal complaint. A complaint of 14 pages which took over 2 weeks to write. Documented everything and supplied with all the evidence needed. (I do wish I could share this with you all, it explains everything I went through). You’d think this would be the end of this horrid saga. Oh no, so much more happened…..Buckle up!
Complaint Against Me Meeting
I had a meeting with a couple of the trustees. In this meeting, the subject of the website also came up. They told me how they fully understood why I didn’t give full access to the secretary. This left me confused as to why then they didn’t back me up at the time.
It was also mentioned how they were now thinking of moving the website from my 3rd party hosting to one they would purchase. It was also hinted in this meeting that the resolution the secretary wanted to her complaint was for me to not become the next secretary.
Hindsight is a wonderful gift, when looking back on the whole situation I can see already how the charity is pulling away from the situation the secretary has created! It would seem the charity has already decided I won’t be the next secretary.
My Formal Complaint
During my meeting, I was informed that both secretary and chair, (husband and wife), had abruptly left the charity on such and such date. Coincidentally, their departure aligned precisely with the submission of my extensive 14-page complaint. It was as if someone had immediately informed them of my complaint when submitted. This would have been against the charity complaints procedure. This development feels suspiciously orchestrated by the two of them.
According to the charity’s newly drafted (temporary) complaints procedure below, you can see the procedure shows step 7/10 (over a week later after a complaint has been submitted), does the other party get notified of a complaint being made against them. I can’t remember the exact date but I know the secretary left either the day I submitted my complaint or the day after.
Overview of the complaints process.
1. Complaint received by a trustee. This should be read by the recipient.
2. The Trustee who has received the complaint should contact all other trustees whom the
complaint is not about or who do not have a conflict of interest. This should where reasonably possible be done within 48hours of the complaint being received.
3. The recipient of the complaint should acknowledge to the complainant that the complaint has been received and the rest of the board have been contacted.
4. A meeting between any trustees not involved or with a conflict of interest should take place within 7 days of the recipient making contact with the other trustees. The purpose of the meeting is to decide a team of 2-3 trustees who will carry out an investigation into the complaint/concern. It should not be a long meeting.
a. The recipient to lead meeting.
b. Recipient to remain point of contact with complainant – unless there is a conflict of
interest in which case another trustee takes over this role as named person.
c. The other trustees, not the recipient, are elected at the above meeting to investigate the
complaint/concern. This is to ensure impartiality. Hereafter known as the investigating
team.
5. Once an investigating team has been decided they should read the complaint statement made by the complainant. A meeting should be organised with the complainant.
6. This purpose of this meeting held between the investigating team and the complainant is to clarify or confirm any details. Including finding out how they would ideally like the situation to be resolved. (This may be organised by the investigating team in a way in which one person takes the lead during the meeting with the complainant and is their point of contact, and the other takes the lead when speaking to the other person(s) involved, or maybe both meetings led by the whole investigating team. This will be decided by them.)
7. Where the complaint is against or concern is about an individual, the investigating team should then contact the other involved parties to inform them that a complaint has been made and to organise a meeting with the investigating team. The purpose of this meeting it to raise the concern/complaint with them and establish their sequence of events.
It also came to light the secretary had told other trustees the same things she had told me about others. Her behaviour had been going on for some time.
Secretly, of course, I couldn’t help but think how the charity was getting exactly what it deserved for sitting back and being complacent in how the secretary treated me! (Isn’t there something about those who sit back, do nothing and just watch are just as guilty as the offending parties?)
Of course, the secretary just upping and leaving like she did, meant the board had little to no information regarding the event that was a month away. Throughout these seven months, I witnessed the secretary orchestrating situations to assert control over the charity’s operations, making decisions to fulfil her own desires and requirements. However, she conveniently portrayed herself as the victim whenever it suited her.
It was around this time the charity contacted the Charities Commission, I don’t know the outcome of that.
Website Part 2
I’m doing my best to keep this in chronological order hence why you have part one and Part 2 of a particular subject.
As I said previously, I was led to believe there was an agreement in place regarding the website. When I received the charity’s official response to my complaint regarding the secretary, it was in this response that the charity adamantly stated there was no agreement in place. I’m pretty sure you can understand why now I have become rather angry.
We are five months down the road from the website going live and considering all the conversations between myself, the secretary and the chair. Not one trustee came to me saying I should not be doing what I was/had done. All the trustees commented on how wonderful their new website was and how it looked current and in line with other website designs.
So once again, was this in preparation for the charity to distance themselves from this whole saga that I had been manipulated into?
The Annual Event
The charity’s annual event was almost upon them, the website advertised the event and guest speakers that would be attending. It was difficult to tell who or what company was attending as it was pretty much all in one paragraph, so rather than being laid out nicely with each person/company as a header with a little description underneath, it was all written as one paragraph so you had to fish through the information to find each attendee and their information.
It was evident the charity had no clue as to what still needed to be done or what had been done already by the secretary as at the 11th hour, it came to light that the contract with the hotel where the event was taking place, had not been signed. So there was a mad rush to get that sorted or the charity may have lost the hotel! Again, this showed the incompetence of the secretary’s abilities as she was organising the event as she did every year.
The event went well considering the upheaval that was left for the board to cope with. However, many people that had booked the event, didn’t turn up. This may/or may not have been because of the terrible weather that was happening at the time. It was mentioned that the secretary may have put people off attending to be spiteful. As the charity paid for everything, those who didn’t turn up wouldn’t have lost any money. However, the charity lost out instead.
Data Protection Breach
The secretary and chair insisted on delivering the boxes to the hotel, filled with charity literature, flyers, member forms etc. rather than having a courier deliver them to the registered charity address. Therefore, it was agreed they would leave the boxes (approx 30) in a room that would be locked afterwards. (Certain people/trustees believed this was so the secretary could witness how much of a failure she believed the event was going to be due to her sudden departure).
However, they deviated from this plan and left all the boxes unattended in the main foyer, just inside the hotel’s main entrance, before departing. This was very alarming, considering the sensitive personal information contained within the 600-plus member forms alone. Names/addresses/phone numbers/disability/other family details etc. I know this as I had been shown them during my early training days.
To this day (to my knowledge), neither the secretary nor the chair faced any consequences of their actions. I don’t suppose the members not there at the time knew of this either. I can confirm, however, that the boxes were very quickly attended to.
So, not only is the secretary prepared to divulge personal and accusatory stories verbally to practically anyone who will listen. She is also prepared to leave data-protected information in a public place unattended. The secretary would not have known that these boxes would have been attended to as quickly as they had been! In my opinion, this woman should never be allowed to be a trustee of any charity in the future! Hell, she shouldn’t have been a trustee to this charity!
So, I’m Not The Next Secretary!
The acting chair of the charity asked if she could talk to me at some point during the annual event. Later, my husband and I, the acting chair, her husband, and another trustee were in a room by ourselves. The chair informed me that there had been a Facebook post about me that the secretary had written. The chair refused to enlighten me on the contents of this post. It was only later that weekend that my daughter got in touch with me to notify me of the same post. She was able to screenshot it over to me.
It was during this conversation that the chair suggested it might not be an opportune moment for me to assume the role of secretary, citing concerns over the secretary’s behaviour. Instantly, I found myself overcome with emotion, breaking down in tears in front of everyone present. She went on to say how I could work in the background until a more opportune time. Ermm, isn’t that what I’ve already been doing?
As the day wore on, my anger grew as I sensed I was being discarded like rubbish. Instead of being met with empathy and support, I was once again frustrated that I was at the mercy of the secretary’s behaviour! It felt as if all my efforts had been taken for granted, leaving me feeling completely abandoned and without any support during such a challenging situation. Again, hindsight is a wonderful thing, these are not the kind of people I would want to work alongside anyway.
20th October 2023 – As it was a public post, I’m not breaking any Data Protection but I have removed any identifying information.
More Accusations
A couple of points first…
How could I be holding the website and emails hostage when all the trustees had login details for the website? None of the trustees commented or stood up for me, they just ignored everything.
If I was holding the emails as hostage how come the charity was still able to receive emails? Again, no support from the board.
Even after leaving the charity and stepping down as secretary, she still accessed charity accounts to be able to remove herself from the member database, and MailChimp! Who knows what else she had done, board bothered? Obviously not.
24th October 2023
Point 1 – I threatened her? Yeah, if you say so love. Here is an exact copy of the email she is referring to (again, I have removed all identifying details:
Good afternoon everyone.
I won’t be attending today’s meeting for a couple of reasons. I would like it noted that I have not taken this decision lightly, hence my last-minute notice:
It has become evident that my role as a trainee secretary holds no further value.
I refuse to be the cause of any discomfort that may arise, as has happened in the past.
I am determined not to subject myself to an individual’s ego-driven agenda and become a target of victimization once again. I’m not willing to volunteer myself into an environment that we all recognise would likely be uncomfortable, contentious, or even toxic. (It’s quite possible that I wouldn’t be able to restrain my opinions.)
Since I’m well aware of the likely discussion topics based on the agenda, I’d like to offer my composed and rational response.
Website – I assume handing over FULL administrative access
You may or may not be aware, but there is an existing agreement regarding the website. It seems probable that I would be asked to provide FULL administrative access. However, complying with this requirement would lead to a situation where I’d lose access to the website, similar to previous occurrences.
Taking such steps would effectively amount to violating the agreement. I find myself contemplating how this situation would be perceived if I were the one considering withdrawing from an agreement with charity.
For clarification, I would recommend reviewing the minutes of the meeting held on May 21, 2023. Regrettably, these minutes do not include the details of the agreement that was reached, (I wonder why?) making it impossible for you to verify this aspect. (This does appear to be an ongoing pattern).
The following information is very clear:
Guidance – Charities and meetings: Source: Charities and meetings – GOV.UK (www.gov.uk)
9. The role of the Secretary
9.7 On the day of the meeting
It should be remembered that decisions reached at a trustee or members’ meeting are collective decisions and the decision is binding upon all charity trustees and members. It is for this reason that all charity trustees/members are encouraged to participate in all debates.
12. Minutes
As the minutes are the charity’s record of decisions it is important that they are accurate and stored properly. They may need to be used to support decisions approved at meetings and to show approval and adoption of the audited accounts. The minutes of all meetings, particularly trustees’ meetings, need to be kept during the existence of the charity.
This agreement solidified my commitment to constructing TAG’s new website entirely from the ground up (www.arthrogryposis.co.uk), a project valued at over £2500. Additionally, I took on the responsibilities of providing hosting services and ensuring the ongoing maintenance of this website, all at no cost. This is projected to result in saving well over £900 per year for TAG.
Furthermore, I was tasked with creating a written agreement detailing the contingency plan for the website should I not assume the role of Secretary/Trustee or in the unfortunate event of my passing. I’m pleased to confirm that this agreement has been drafted and appropriately signed.
The website remains a work in progress, with various backend elements still yet to be implemented. Based on past experiences, I am not comfortable providing complete access to the website, only to find myself locked out once again.
Given that there are only 2 months remaining for the current Secretary’s tenure, I fail to see a reasonable justification for granting full administrative access at this time.
It seems more logical to defer such decisions until after the AGM has taken place and the roles of treasurer, chair & secretary have been definitively established. This will provide the appropriate context for determining the way forward.
In the event of the site encountering issues (as it has before when attempted updates caused problems), who would resolve the issues and get the website operational again?
Someone said: “I believe that at least two trustees should have access (and surely the secretory should be one of them?) to edit/update the website?”
To clarify, login credentials were supplied to all trustees on the 25th of June 2023. Both trustees & Secretary are able to do exactly what was requested and more.
What you can do:
Create/delete/update posts
Create/delete/update pages
Add/remove images
Approve/decline/reply to comments – If and when set up (if needed)
Add/delete templates
Change charity profile
Change website theme
What you can’t do:
Update the software – Software update of WordPress/Plugins/Themes – This is set to auto-update, so wouldn’t need access.
Can’t change GDPR notice – Would only need changing if the law requested it to
Elementor software info – This includes the backend system info
WP Forms – Not been used to create charity’s email forms anyway
Change Header – I can change this if/when needed in the remaining time-frame
To be fair, the access that has been restricted wouldn’t be required for a considerable period, if ever.
Emails
Outside of being removed from all accounts, I have no idea what this would be about.
Omeo Contact details
All conversations concerning participation in the FW occurred in person. Subsequent communication took place through the contact page on their website.
If a secretary struggles to locate public contact information for a public company, it raises questions about their proficiency.
It’s also worth noting that we do not possess personal email/contact details.
Complaints
Oh, the list is quite extensive. Let’s begin somewhere.
I offered my help because I genuinely want to see charity prosper, succeed, and become the best it can be. It’s disheartening to contemplate how I’ve been treated despite my sincere intentions to contribute.
Sadly, my efforts appear to have been manipulated and exploited. It’s intriguing how, soon after successfully initiating everything, I found myself systematically and progressively removed & pushed away from charity.
This included:
All social media accounts
Removal as admin from the Members only Facebook group
All Email accounts
The charity bank account
All Microsoft emails & forms
Basically removed from everything related to charity
I was included in these tasks as part of my preparation to potentially become the next Secretary (pending the vote). Therefore, it’s puzzling to be suddenly removed from all of them. Doesn’t this go against what charity originally invested in?
I have (as have others) noticed previous minutes have been consistently edited inaccurately. On this occasion, I would recommend that all of you request a complete and precise copy of those minutes, allowing you to independently read the agreed-upon details from the meeting, rather than solely relying on my account or the edited version!!
Kind Regards
Caroline
Did I threaten her? I have read and re-read this email and I see NOWHERE, where I have made a threat towards the secretary!
Point 2 – Sat there with another trustee opposite the bar? Well, here’s the thing. I asked the hotel for all CCTV footage of my activity in the hotel before, during and after the time frame of the secretary attending the hotel. The CCTV shows my husband, said trustee and me zooming away from the reception/bar area as soon as we saw her arrive. Then we disappear around a wall out of sight. If I had “kept rolling forward giving daggers”, this would have shown up on the CCTV. As with a lot of this blog, I can’t share this footage as the other two people with me are easily identifiable, even though their faces have been obscured. If I thought for one moment I could share it, believe me, I would.
Oh, she kindly had this attached to that post. There were other posts and memes but not worth boring you any further. Except to say, I responded only once to her public abuse of me on my Facebook:
30th October 2023
It has been brought to my attention that I have had some serious public accusations made against me. I would like to take this opportunity to confirm these are very much untrue! I have 14 pages of evidence to back this up but due to the nature of some of the content, I don’t feel it is appropriate to share this. Not only that, GDPR prevents me from sharing this as there are a lot of personal information and accusations about other people that I had to include.
Unfortunately, because I didn’t succumb to this person’s manipulation to taint my opinion of others or become their puppet/pawn, they have chosen to target me. It saddens me to think that someone’s life may be so devoid of fulfilment that resorting to such actions is their means of feeling empowered and significant.
I sincerely wish them the best in their future endeavours, and I hope they find the love, support, and assistance they so clearly crave.
Her accusations killed me as no one knew what she had/was putting me through. Even when she wasn’t supposed to have any contact with me during her formal complaint against me, she still contacted me to request my £20 contribution for the annual event, even though she already knew I wasn’t going which she confirmed in her post above. (I was later talked into going).
Website Part 3
6th December 2023 – The charity now claims there was no prior agreement and explains they want to transfer the entire website to its new hosting plan. Feeling that the agreement was being rescinded, I deemed it fair to request payment for the work I had done, knowing full well they wouldn’t pay me.
The charity received an invoice for a fair amount. I wasn’t going to hand over a fully functioning website valued at over £2500 without a fight. I wasn’t willing to be taken for granted any longer by the charity. They refused to pay.
January 2024 – The website was directing donations via cheque to the former secretary’s home address, you know, the one who abruptly left in September 2023. I informed the trustees. A week later, no action had been taken. Frustrated, I decided to hide the website from public view and informed all members of the reason. The charity responded with a feeble excuse, citing the need to wait until after the AGM in November before updating the registered address. They also attempted to portray me as the antagonist.
Let me get this straight! They claim they couldn’t update the address until after the AGM in November 2023. However, I received a letter from the charity on December 20, 2023, with the new registered address. Yet, in response to my notification to all members on Facebook, on January 10, 2024. They responded insisting they couldn’t remove it until after the AGM. Does any of this make sense to you?
as the AGM took place in November, we couldn’t update trustee information, or our official new address until then
The information was text on a page, therefore this information could have been completely removed and anyone wishing to donate via check could have been asked to e-mail the charity for further information! IT’S NOT ROCKET SCIENCE!!
No Website
20th January 2024 – The charity refused to pay me and as I explained they legally own their domain name. They gave me 2 options, give my hosting company authorisation to transfer the whole website over to their hosting, or to release the domain name. So obviously, I deleted the website and handed over their domain name.
It was sickening to see all my hard work disappear just like that. The charity over the last month or so kept changing their story as to whether or not there was an agreement in place. At this point, however, I just wanted rid of the whole horrid, toxic situation! My personal life had suffered enough due to this charity, I just wanted rid of them.
I had done everything asked of me by this charity, even my husband made items for their annual event and handed every penny earned over to the charity. He took nothing for himself. Yet here I am now being portrayed as the bad guy? Wow, so glad now to be through the other side.
That was 4 weeks ago and the charity still doesn’t have a website. Their holding page is missing the images too, just a description of what should be there. (oh, was that a bit catty of me?)
The Charity As A Whole
Having practically a year’s insight into this charity, I feel it is an environment where the trustees try to do things very much for a quiet life. Don’t want to rock the boat! I have no idea as to why none of the trustees came to my aid when witnessing the behaviour of their secretary towards me or when she persecuted another trustee.
The board knew what the secretary was like, that much is obvious. They let me be trained by this person, and travel to meet her in person without a shred of concern for my well-being, safety or anything. The trustees just sat back and let her get on with it! What on earth do you call this behaviour? Negligent? Toxic? Narcissistic? Maybe all of them.
Even when the board knew of the stories the secretary had told me, again, not one seemed overly concerned, just saying, “Yeah we know, we’ve been told the same”. Some of these stories are about you, how can you be so blasé about it all?
It’s truly disheartening to witness such behaviour, especially when it’s so far removed from one’s own principles and values. I know I could never harbour such vindictiveness towards another individual; it simply isn’t part of my nature. That’s why it hurts so much to experience this kind of treatment firsthand.
Not In Place
No Safeguarding policy or officer – All charities have a responsibility to ensure they don’t cause harm to anyone who has contact with them. Charities working with children or adults at risk have extra responsibilities. As a trustee, you must make sure your charity fulfils this responsibility. Even if you delegate some activities to a safeguarding lead or group, you retain overall responsibility. Harm and abuse have a devastating impact. A strong safeguarding culture means:
you protect people
you minimise the risks of any harm or abuse
everyone has confidence their concerns will be dealt with appropriately
There is no completed complaints procedure in place – One had to be created for the complaints: “Please see the attached overview of our ‘Compliments, Comments and Complaints’ document. This is a draft version, as we are currently updating our policy documents”. I never received the updated version.
The Secretary’s address was advertised on the website for donations by cheque to be sent there. – Has she received any, who would know
The secretary had all passwords and access to charity-related accounts for a while AFTER departure! – These were not changed immediately
The worst part? THE BOARD SAT, WATCHED AND DONE NOTHING!!
Conclusion
I haven’t been able to go into as much detail as I would have liked or supply the proof that I have sitting on my computer. However, this should not discredit the treatment I received from this charity and its secretary.
I believe one of two things should happen.
Every trustee should be made to go on courses to learn how a charity must operate, safeguarding legislation, data protection legislation, proper administrative skills, and any other related skills to the running of a charity.
All trustees be replaced with people who know what they are doing!
The secretary tried to influence my opinions of others by divulging very personal details of other trustees and members. Pushed other trustees from the board if they didn’t agree with her
Received repeated video calls morning, noon, and night!
Manipulated into creating the charity a brand-new website for free
Told I was unimportant as I was only a trainee.
My life was taken over so much that my brain fog was at an all-time high. My IBS also flared up astronomically.
If I didn’t appease the secretary’s whims, she became controlling, intimidating, manipulative, and angry.
I became sick every time I received an email for fear of what it would contain this time.
My sleep was non-existent, which of course exacerbated my other ailments and my mood.
I’m not ashamed to say I cried myself to sleep many nights during this ordeal. I became so depressed that my life was put on hold until very recently as this ordeal has finally been put to rest.
Contact Me
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
Pioneering the Future of Wheelchair-Friendly Flying – As a wheelchair user, I often imagine the destinations I’d fly to explore if I didn’t have the constant concern of my wheelchair being lost or damaged while flying. Air4all think they have the answer with their innovative approach. This would mean mine and your worries would be a thing of the past. Wheelchair users and air travel don’t normally go hand in hand as there are significant barriers for many of us. The horror stories we all read about seem to be getting worse, rather than better. With Air4all’s solution, these horror stories may become a thing of the past. Are we on the brink of a breakthrough in accessible air travel or is there still a long way to go?
Who Are Air4all?
My understanding after some research and visiting their website. Air4all is a company of three people (Nigel Smith – Director of SWS, Paul Priestman – Designer, Chairman of PriestmanGoode and Christoper Wood MBE – Founder of Flying Disabled) and Sunrise Medical. Have teamed up with an idea of how to enable wheelchair users to fly in their wheelchairs on commercial aeroplanes.
Air 4 All is a consortium formed of PriestmanGoode, Flying Disabled, SWS Certification and Sunrise Medical. Each member of the consortium has a personal and professional commitment to bringing dignity in air travel for everyone. Through a combination of industrial design, passenger experience design, aircraft cabin and airport accessibility, aircraft certification and regulation; and wheelchair design and manufacturing, the consortium has been developing the Air 4 All concept since 2019. It has been recognised as the winner of the Fast Company Innovation by Design 2022 Awards in the Accessible Design category, a finalist in the 2022 Crystal Cabin Awards and has featured in media and conferences dedicated to the topic of accessibility across the world.
The concept is to enable wheelchair users to be able to fly while remaining in our own wheelchairs. If this becomes a reality, this would be the next massive advancement for disabled people! According to the different websites that I have researched. It claims we would enter the plane in our own wheelchair and manoeuvre into a dedicated wheelchair space. We would then be locked to a floor device similar to the ones found in wheelchair-accessible vehicles, or in other cases, tie downs.
Airlines would not lose any revenue as the space dedicated for a wheelchair user would easily transform from a passenger seat into a wheelchair space.
I’m sceptical due to the issues this gentleman has positioning his chair in such a tight space. Also, the amount of room he has used to get into the correct position is just not available on a plane. I doubt this amount of room will be given. So what if you have a wider chair? Is the space adjustable? I have to say, when he finally got in the correct position, he didn’t look like he was comfortable. What are your thoughts?
This video shows even less space available for manoeuvring and uses a locking pin. So does that mean all new wheelchairs are going to be supplied with this pin needed to lock into the floor of a plane? How will this affect those of us needing a pin to lock into our WAVs? All wheelchairs would need to be crash-tested too.
There are many parts to the Air4All project. Whilst the aircraft space will unlock a huge door that has been until now closed, it will be nothing unless a Power Wheelchair is not certified to fly. Working with Sunrise Medical, together we can explore the challenges around ensuring a Power Wheelchair is fit to fly. Design and certification being the primary test.
We’ve seen the tiny space wheelchair users are expected to get into but what about if you need the toilet? On my very first flight as a wheelchair user, I had to use the aisle chair to get to the toilet. I couldn’t believe what little space there was. (Check out my First time flying as a wheelchair user blog). There is no way I could have used that by myself, let alone get any wheelchair in there.
Conclusion
As much as this is an amazing idea and I can’t wait for it to become a reality. I think that’s all it can be for now, an idea. After seeing the videos above, my thoughts are that there is still a very long way to go. I have been hearing about wheelchair users flying in their own chairs for many many years now. We don’t seem to be any closer than we were all those years ago.
The space is not practical (IMO), airlines will not lose the space that would be needed to enable wheelchair user on the plane in their own chairs. Toileting will be no easier either. The way things stand right now, I don’t see this happening any time soon.
Would you fly more often if you could fly in your own wheelchair? I know I would. Let me know your thoughts in the comments.
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
Keep Warm & Cosy With This Fleece-Lined Cover – Review.A friend suggested I try this fleece-lined lower-body wheelchair cover as my legs are always cold, which causes me a lot of pain. Which is made worse when out and about, especially in cold weather. I have been using this cover for almost a week now.It’s probably the best product I have tried to date. So I wanted to share my experience with you.
The Product
There were two items on Amazon (no, I’m not affiliated) practically identical. One was cheaper than the other, but didn’t look as good quality, therefore, I decided to go with this one. I am extremely happy with the one I purchased: Wheelchair Cover
It’s advertised as being suitable for people up to 5ft 9″ max. I would disagree with this. I’m 5ft 2″ and if I pull the cover up so the sides are at my waist (which is where I would expect them to be) I find my feet are hitting on the bottom inside of the cover (without shoes on), leaving me very little room for shoes or movement.
The back part of the cover has two elastic loops which you can put over your wheelchair backrest handles. I’m in an electric wheelchair, therefore, as I have no handles on my chair, I’ve had to use straps that I already had to attach to the loops (link at bottom of the page). Then I tie them around the bar behind my backrest. I do advise utilising these loops as they keep the cover in place whilst transferring in and out of your chair.
As we all know, it’s extremely expensive at present to put our heating on, therefore I use my fleece-lined cover even while sitting indoors. I also have a fleece-lined shawl that I wear with my lower body cover (link at bottom of the page) and I have found this allows me to sit indoors without having to put my heating on as often.
The outer cover is waterproof (the reason for me purchasing this). I have not used it in the rain as yet but it certainly looks like it will work well.
Using The Cover
This cover comes up to your waist area (depending on your height) with an extra bit that goes up the backrest part of your wheelchair. As I previously mentioned, the backrest has two loops attached so it can be hooked over the handles of a wheelchair. I find this helps the cover stay on your chair while transferring in/out of my wheelchair. I use velcro straps to attach the loops to my chair as I use an electric chair without handles.
The Lining
The lining is made of fleece. I find it to be extremely warm, my legs feel like I just got out of bed which they never feel that way during the day. I did notice the first couple of times using this, the fluff transferred quite easily onto my clothes. The cover is washable, I’ve washed mine and it survived very nicely!
The bottom of the cover is almost an oval shape with no fleece lining on the inside. This makes sense as this is where your shoes would sit. This obviously would prevent dirt, muddy water etc from dirtying the inside fleece.
The Zip
There is a piece of string sewn into the front of the cover at the top. On the other end, you can tie it to the zip loop. I find the string extremely useful as I don’t have to bend down to my feet area to grab the zip loop to close the cover. The zip is so easy to open, as all you have to do is gently pull apart the cover and the zip will slide down smoothly, meaning once again, no bending down needed. There is a loop on the inside and outside of the zip.
The cover doesn’t come completely apart, in the respect that the zip will open the cover to the bottom but the zip is sewn into the bottom. This way, you never have to start the zip off as it is always ready to go. Hopefully, the image below will show you what I mean.
One thing I will say, however, is that when trying to use the string to pull the zip up, I find it pulls the cover with it which doesn’t allow the zip to close. What I do, is use a foot to hold the cover down at the bottom of the zip while pulling on the string to close the zip. I find this works a treat.
Conclusion
I’ve knocked off one star as the inside pocket is not placed correctly for proper use, something I would have used had I been able to. The pocket seems to be almost around my back and too low down for me to be able to use.
Other than that, I would highly recommend this cover as it is very warm and it will protect your legs in wet weather. Go on, treat yourself, I did lol.
A Nightmare for Accessibility: My Experience at Hilton Metropole Brighton – My daughter and I stayed here for a weekend convention. We were looking forward to staying here as it looked very grand and all the rooms had just been renovated. Unfortunately, this is probably one of the worst hotels for accessibility that I have stayed at!
Lifts were too narrow, no heating around the hotel and the restaurant was not available.Renovations happening and raised thresholds in all the doorways. The list goes on and on! My accessible room only had two accessible features: A wet room and red alarm cords.
We had this weekend booked months in advance as it was a convention for our favourite show (Supernatural) and one of the main stars was going to be there. Excited is very much an understatement of how we were feeling.
The Hotel
Our first issue was parking! We could not use the hotel own’s car park as my van (WAV) would not fit in the underground car park. This meant we could not benefit from the discount offered by the convention organisers. Also, hubby had to take us & pick us up as parking anywhere else was just too expensive! Prices of other car parks are anything from £25 a night!
The entrance to the hotel was very difficult. There was a ramp up to the main revolving door. There was a single door on either side of the revolving doors but these were very narrow. When we arrived, both these doors were locked. My daughter had to go into reception to ask for some help. The first door opened inwards, then directly after that, a second door opens towards you before you enter the foyer. Very difficult to do if you were on your own.
Once inside, first impressions are good. The hotel looks very clean and upmarket. Check-in was easy, I can’t fault the staff in any way, they are all very polite, friendly and helpful. The hotel is advertised as having 340 rooms. When I spoke to the hotel, I was told they have 9 accessible rooms but don’t quote me on that as at the time they were being renovated and things may have changed.
The hotel features advertised:
Connecting Rooms
Digital Key
Spa
Beach
On-site restaurant
Indoor pool
Fitness centre
Pet-friendly rooms
Room service
Meeting rooms
Available accessible features include:
Accessible meeting rooms
Audible alerts in elevators
Bathroom doors at least 32 inches wide
Bedroom doors at least 32 inches wide (812 mm)
Braille elevator
Cutlery with oversized or adapted handles
Digital alarm clock available with sound and a vibrating pad
Disabled parking
Elevator buttons lowered
There’s an Emergency Call Button on the Phone
Emergency pull cords bedside bed & bathroom
Evacuation chair is available to help evacuate a disabled person
Grab bars in the bathroom
Hotel complies with ADA Guidelines
Induction Loop System available at reception & in meeting rooms
Inflatable chair is available to assist in getting in and out of a bath
Large Print Menus
Level or ramp entrance into the building
Lowered emergency evacuation instructions
Public Areas/Facilities accessible for physically challenged
Roll-in Shower
Rooms accessible to wheelchairs (no steps)
Serv support animals welcome
Strobe alarms
Swimming pool hoist for pool access
Vibrating fire alarm available
Visual alarm for hearing impaired/Visual alarms for hearing impaired in hallways & public areas
Wheelchair ramp for lobby/reception access
Some of their accessible features need reassessing, for example. Their disabled parking is not accessible to WAV drivers. The lifts were far too small, ok you can access them but if you’re a wheelchair user, there is only room for you and one other person. Grab bars in the bathroom for me were useless!
Hotel Access
We found the lifts in the foyer to be extremely small in size, there were two of them. Actually we found all the lifts to be very small. It didn’t help they all have floor-to-ceiling blankets on all sides as part of the hotel was still being renovated. My daughter and I just fitted into them! My wheelchair is a small chair (16×16), I don’t know how anyone using the lift in a bigger chair managed it.
Due to the layout of the hotel and our room being on the 2nd floor, this made navigating around the convention very tiring and time-consuming. We would have to take a lift down to the foyer, which at times took forever. Then travel around to the back of the hotel to another lift (which was smaller again) to get upstairs to the mezzanine floor (foyer lifts didn’t go to that floor). Again, this could take forever as all attendees are practically leaving and arriving to/from talks, photo ops, autograph sessions etc. at the same time,
I found the hotel was cold throughout the whole weekend. This played havoc with my chest and circulation in my legs. The only time I was warm was when I was in bed, which I have to say was rather comfy.
There were doorway thresholds throughout the hotel and in our accessible room, which were all raised causing you to bump over each one and some were more violent than others. I have a powered chair and found them difficult and painful.
Our Room
I found the room to be inadequate as far as accessibility goes. I encountered many issues with our room considering the hotel has just had a complete renovation in all its rooms:
Raised thresholds in doorways causing pain in my back
No table at wheelchair height – One large round table at knee height. Also prevented safe transferring on/off the bed
Not enough grab rails – One on each side of the shower seat but quite low, none at a higher level
Grab rails chrome & round – This made them slippery and difficult for me to grab. A silicone cover needs to be added
Dim lighting – The room was very dark – The only lights were the two bedside lamps and a lamp in the corner of the room and one just inside the room door (overhead). Windows didn’t let in much light either
Safe at the top of the wardrobe, too high for a wheelchair user
No clothes rail at all – In what I assumed to be the section of the wardrobe meant for hanging clothes, there was no rail, so you couldn’t hang anything at all
The bedside table blocked access to the wardrobe – The wardrobe was in the corner of the room. There was a bedside table in between that prevented access to the wardrobe
Light switches too high
The room was at the end of the corridor in the corner making it difficult to use the key card and open the heavy door
Room temperature control not accessible by a wheelchair user – This was sat against the wardrobe and as the round table also sat next to the wardrobe, again it prevented access
The bathroom mirror is too high
No finger basin/sink close to the toilet
Staff
I can not fault the hotel staff in any way (shame can’t be said about a certain member of staff from the convention side). Every member of staff I interacted with was polite, friendly and willing to be as much help as possible.
One member of staff from reception (I wish I had got her name), was absolutely lovely as she went out of her way to get me a table I could use in my room. This made all the difference to my being able to function in the room from taking my medication, drinking, eating & brushing my hair.
Hotel Food
Their Salt Room wasn’t open and their advertised on-site restaurant was only open for breakfast. I was told the restaurant was only for special bookings and had to be made 48 hours in advance. The bar serves afternoon tea and all-day casual dining. I personally found the food choices in the bar to be poor and not sufficient enough to be the only place to have a meal all over the weekend. The only other food we had were food huts upstairs when things were happening convention-wise, which served hot dogs & burgers.
I felt the food was very overpriced and what we didn’t know, was that the bar was adding a 12.5% service charge to every order. There was supposedly a sign up at the bar, not helpful for those having table service.
Breakfast was held in the main restaurant. There was any amount of food you could wish for, from toast and cereal to a full English breakfast, all buffet style. Tea, coffee and juices were also available.
Conclusion
The hotel is very clean, with nice enough decor (not my taste). Breakfast was very good but a shame nothing substantial to eat for dinner. Considering this hotel has just had all its rooms renovated, you would think this would give them the perfect opportunity to get accessibility spot on. Instead, it is practically non-existent. I also spent the whole weekend frozen! For these reasons, I would never stay here again!
I’m due to stay in their Birmingham hotel for another convention later this year, I have been assured by other convention goer’s that the Birmingham one is much more accessible and better on the whole. Fingers crossed.
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
How Easy Is The Open Sesame 6-in-1 Tool To Use – My Review – I bought this tool to help me be more independent around the kitchen. You’re told in the opening image of this product: 6-in-1 tool, Opens almost anything, No effort required and guaranteed to work every time!
It goes on to say: This all-in-one quality tool makes opening jars, bottles, lids, packets, bags, seals and tops practically effortless! These are massive claims for such a small product. But……Can it do what Must Have Ideas say it can?
The Sales Pitch
The Open Sesame 6-in-1 Tool is a multipurpose tool advertised to make everyday tasks easier for people with disabilities, especially those with limited hand dexterity. It is designed to help open bottles, jars, cans, and doors, as well as pulling tabs open. The tool is compact and lightweight, making it easy to carry around and use.
When I opened up the package, it looked a good size and it came with instructions. I chose the blue colour and it cost me £9.99 (This included their 40% off offer) although I’ve never seen this product at full price (as I had my eye on this for a while) plus P&P.
I have tried opening all of the things MHI have claimed this tool can open:
Tin cans (ring pull) – Opened these with ease, as long as the tin is sat on a firm surface
Bags (like frozen chips) – Unable to do this due to my dexterity and grip
Milk cartons (2-pint carton) – Unable to do this due to my dexterity and grip (couldn’t open the plastic screw lid to get to the tab)
Jars – Impossible due to my dexterity and grip – The tool was also too big for me to be able to try and get a better grip
Bottles – Again impossible due to my dexterity and grip – The tool is too big for me to be able to get a good grip
Bottle tops – Able to do this
What I can’t understand is the fact that Must Have Ideas claim:
Open Sesame makes a really thoughtful gift for anyone with dexterity issues.
I have dexterity issues and I couldn’t use this tool to its full extent, making their “Guaranteed to work every time” claim to be false. Maybe even verging on a complete lie to make sales! Needless to say, I felt really let down and disappointed. So I contacted their customer service team (CS).
Customer Service
I emailed them with my concerns over their wording and how I felt it was very misleading and maybe at worst, false advertising.
Here’s hoping their marketing team do the right thing and makes the wording for this product more realistic and true. I bought this product based on their advert, I feel let down and misled! It’s NOT guaranteed to work every time, as advertised!
If you wish to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
Quick Guide To Cruising as a Wheelchair User: Tips for Accessibility and Enjoyment – As a wheelchair user, cruising can be an exciting and liberating way to explore new places and make lasting memories. However, it’s important to be aware of the unique challenges that come with cruising as a person with a disability, and how to overcome them to ensure an enjoyable experience.
Research
The first step is to research the cruise line and ship before booking. Not all cruise ships are equipped with the same level of accessibility, so it’s important to look for ships that offer accessible staterooms, public areas, and dining options. Some ships may have wider hallways, larger elevators, and even hydraulic pool chairs to accommodate wheelchair users. It’s also important to check the ports of call to ensure that they are accessible and offer tours or excursions that can accommodate wheelchair users. Some ports of call are by tender only, so make sure you do check this out.
One challenge that wheelchair users may face on a cruise is finding accessible shore excursions. It’s important to research the accessibility of each excursion before booking. Some excursions may be more challenging for wheelchair users, while others may be more accommodating. It’s also a good idea to ask the excursion provider about the level of accessibility, as they may be able to provide additional accommodations such as a ramp or accessible transportation.
When booking a cruise, it’s important to communicate your needs to the cruise line. Let them know that you are a wheelchair or full-time wheelchair user or will be travelling with a wheelchair and any other equipment you may require, such as a shower chair or hoist. This will give the cruise line an opportunity to prepare and make necessary accommodations.
Onboard
Once onboard the ship, you may find that some areas are more accessible than others. It’s important to familiarize yourself with the layout of the ship and its facilities. The crew and staff are there to help you, so don’t be afraid to ask for assistance if you need it. They can help with embarking and disembarking, carrying luggage, and even getting on and off shore excursions. The crew is there to ensure that all passengers have a safe and enjoyable cruise experience.
When it comes to dining on a cruise, most ships have accessible dining options. It’s important to inform the cruise line of any dietary restrictions or requirements in advance. This will allow them to prepare meals that meet your needs. Some ships may also offer room service as an option if dining in the restaurant is not feasible.
Conclusion
Overall, cruising as a wheelchair user can be a wonderful and memorable experience with proper research and communication with the cruise line. While there may be some challenges, the crew and staff are there to assist and ensure that your cruise experience is enjoyable and comfortable. So, don’t let your disability hold you back from experiencing the adventure and excitement of cruising.
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
Quickie Q300 M Mini: An In-Depth Review for Improved Accessibility – My previous EW (electric wheelchair) Spectra XTR2 was hitting 5 years old (average lifespan of a wheelchair).I wanted to know what was available on the market,so I went to a showroom to take a look. I thought if the price was right, I might buy my own chair. This way, I could have a chair that met my needs betterand not have to use the NHS wheelchair service.
I fell in love with the Quickie Q600 but at the cost of over £9,000 inc the adaptions I needed. It was completely out of my price range. I came home very disappointed.
A few weeks later, I received a letter from my NHS wheelchair service. I was due for a wheelchair review. I know how strapped the NHS is, so didn’t dare to think I would ever be offered anything as grand as the Q600. I’m grateful for any chair provided to me as my independence depends on it.
My appointment arrived and I was shocked as I was actually offered the Sunrise Quickie Q300 M Mini. This is in the same range as the one I tried in the showroom (Q600), making these chairs identical. The only difference is the max speed. The NHS is only allowed to provide electric wheelchairs with a maximum speed of 4mph, the chair at the showroom had a max speed of 8mph (also available at 6mph).
Sunrise Quickie Q300 M Mini
The wheelchair’s width is smaller than my previous chair. It feels very compact. You can customise the chair with coloured facias that cover the batteries, rims that sit on the mid wheels and covers for the arms that hold the castor wheels. There are many colours and designs to choose from.
There is a mountain of options available for this chair. From:
Backrest
Footplates
Armrests
Cushions
Tilt
Recline
Swing Away Joysticks
Colours
Elevated footplates
Speed
Headrests
Seat Riser
Controllers
Seating Options
The list is rather impressive don’t you think? If purchasing one of these privately, please visit an authorised dealer to ensure you are fitted and kitted out with the proper adjustments and adaptions. Also, make sure you have a home demonstration. Some dealers charge quite a lot for this so do your research. The showroom I visited wanted £250 for a home demonstration. At the end of the day though, you don’t want to spend thousands of pounds on a wheelchair you can’t manoeuvre around your home.
The size of this chair is amazing, except for one thing. Because this can literally turn on the spot & the back is shaped differently from my previous chair, (I’m assuming because I have the Sedeo backrest), I keep hitting things behind me.
As the backrest is capable of adjusting along the seat frame. I found mine was set far too forward, making me like it was pushing me off my seat. I got hubby to reposition it for me and he moved it back about an inch which has made a huge difference for me but of course, this now means I have more behind me to be more aware of.
Specifications
Source: Sunrise Medical – Bottom of the page.
Seating
Sunrise say:
Instead of a solid base, the Flexi-Back wraps around and contours to the shape of your spine, providing complete contact, comfort and stability. Similarly, the integrated laterals ‘hug’ your sides, forcing the foam to mould to your anotomical curves. The laterals are independently adjustable to help atabilise and align your trunk too. It’s such an adjustable, supportive and immersive back that even those with moderate-to-severe kyphotic postures or spinal scoliosis can sit much more upright without any sacrifice to comfort!
I’m afraid I have to disagree with this statement. I feel I have got my seating position the best I’m going to get it. (Unless I’m missing something). I still can’t get complete contact, comfort and stability. Believe me, when I say, I have had my backrest up/down, forward/back, tension straps loosened and tightened, wings pushed in/out and nothing is coming close to comfort. I’ve even changed my seat cushion to no avail.
I sit with my seat tilted backwards to keep me in my seat and push me back against my backrest. If I’m sitting watching the TV, yes, I can get good contact with my backrest. When sitting anywhere else, I don’t have this comfort. I still feel my limber area is not getting the support needed.
The video on Sunrise’s website regarding the backrest shows that the side wings can be moved up and down along each side. I am yet to work out how this is done. I can’t comment on seating cushions as my chair wasn’t ordered with a seat cushion as I have two of my own seat cushions.
I’ve got elevated footplates. I was quite taken aback by how bulky and heavy they are. They seem to stick up to a point higher than my knees. (Seen in the drop kerb video below). They have padding on the inside by my knees but the padding is hard so they cause more problems than solve!
Adjustments
At the time of writing this, I have moved my armrest up/down, I’ve tried two different cushions, reclined my backrest into many different positions, tightened/loosened the tension straps inside my backrest and even moved the backrest frame out further to stop me from feeling like I’m being pushed out of my seat. I still feel I’m not as comfortable as I should/could be!
I like to have my backrest in a very upright position. My back hurts if I don’t. Unsure if it’s the type of backrest I have (my previous one had no wings, just straight with some tension straps) but I just can’t seem to feel comfortable.
Smooth Ride
The most significant difference for me is that this is a mid-wheel drive chair, whereas my last chair was a rear-wheel drive. Controlling this chair is very different from my previous one. There are 3 type of wheel drives:
This is probably the smoothest ride I’ve ever had in any of my electric wheelchairs and this includes the Storm 3 I had many years ago. Navigating small kerbs is surprisingly smooth and I stress small kerbs. (It’s always sensible to mount any kerb face-on, not at a sidewards position).
Sunrise says:
Our PATENTED all-wheel independent suspension ensures all six wheels remain on the ground whilst climbing and transitioning obstacles. Any shocks or bumps are absorbed by the wheel‘s suspension, providing a soft and smooth ride.
This time, I agree. The suspension is very good. I have, however, found one obstacle that took me by surprise. My parent’s house has a ramp up to their front door (the image right is an example of their front door). The ramp sits under the white step meaning you have a very small step over the threshold, then you step down into their hallway.
When I popped around there to show off my new chair, my chair bounced around unevenly going over this threshold and I nearly cracked the PVC door frame, even though I was driving straight. Yes, I was going very slow too. It is extremely difficult to remember that the main drive wheel is directly under me and not behind me.
Pulling away has what I describe as a slight delay. You push the control knob and it takes (what feels like ages) for the chair to start moving. I notice this most when waiting to cross the road. I assume this is to prevent the chair from jerking when moving off.
To The Test
I have taken a full 4.5-mile round trip to put my chair to the test and learn its & my capabilities. It coped much better than I expected. Although I think I was who failed the test. I was very nervous going up and down hills and some kerbs, especially when at an awkward slant. When I arrived home, I had not lost one light on my battery indicator, which did surprise me.
I took some video footage (below) to show how the chair’s suspension is very good. You see me going over cobbles and believe me, it looks bumpier than it feels. It makes for a very smooth ride. Another note to mention is when you’re riding along the pavement over dropped kerbs, the chair keeps you in a straight line. It doesn’t pull you to the side as other chairs can.
Another video shows how manoeuvrable and compact this chair is as I used a shop’s wheelchair lift to go upstairs. You can see that the turning circle capabilities on this chair were a major factor in being able to use this lift, especially when I got to the top as the door was now to the side of me.
The first cobble test, found this to be very smooth indeed. The second cobble test was a rougher set of cobbles. A little more bumpy but still a lot smoother than some other chairs.I was amazed at how I kept in a straight line going over the drop kerbs. My other chair would almost have me in the road. Again, the tight space wasn’t an issue for the Q300.
Conclusion
If you’re looking to purchase this chair privately, do visit a professional supplier that will take your measurements and give you honest advice as to what you may need. There is so much that can be altered/changed on this chair it is a bit of a minefield. Don’t forget that home demonstration, especially if you have adaptions in your home for your chair like a through-floor lift.
I’ve given this chair a 3/5 for a couple of reasons (I so wanted to give this 5/5):
Footplates are so bulky and heavy. I can’t actually take them on/off by myself (I have actually seen smaller less bulky elevated footplates on other chairs)
I still can’t get myself into a comfortable position even though Sunrise claim this is almost impossible
The armrests can not go any higher than I’ve got them already. This is important to me to keep me in an upright position. This also causes me back pain. – I’m looking into if I can modify my right one to make it higher.
Outside of the above, this is a very neat chair.
Its suspension is extremely good
Turning circle absolutely amazing
Style is great as you have different coloured shrouds and wheel inserts
The controller (NHS version) is your basic controller
Many ways in which you can modify this chair to meet your needs
Am I happy with this chair? You bet I am, fingers crossed it lasts me and that I don’t have any issues in the future.
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
Society tells us that being in a wheelchair is terrible, a fate worse than death!Telling a wheelchair user “how terrible it must be to be stuck in that” or “how they couldn’t/wouldn’t want to be in a wheelchair themselves!” IS NOT COOL!!
Ableds have no idea of what it’s like to be a wheelchair user, so what gives them the right to tell us how awful it is?I’m here to tell you my story of how I became a full-time wheelchair user & why I disagree with the above statements!
How I Became A Full-Time Wheelchair User
I became a full-time wheelchair user roughly 20 years ago. I was born with (Arthrogryposis) and walked using calipers until becoming a full-time wheelchair user. Unknown to me (because my disability is very rare and still is today), Scoliosis can be a side effect of my disability. Scoliosis caused so much pain in my back, it prevented me from walking completely.
My back was getting worse & worse and my ability to walk was becoming more & more difficult. I visited the doctor who referred me to the pain clinic. Which in all honesty, from my own experience and from hearing others, is pretty much a waste of time. It’s like a stopgap so “statistics” look better than they really are. As I got no joy or relief from there, I was referred to Orthopaedics.
It was through them I had facet joint injections in my spine, which only worked for 3 days. Then it was onto radiofrequency facet joint injections but this didn’t work at all.
Since then, the medical profession has seemingly washed its hands off me. They ceased contact with me. No advice on how to deal with the pain outside of taking painkillers.
Fearful
Facing the rest of my life in a wheelchair was daunting & scary. There is no escaping that, no matter how positive of a person you are and I would class myself as a pretty positive person. Nobody wants to be disabled but…..I do believe being born with a disability is easier to deal with than becoming disabled later on in life. I’ve experienced both! I was born with my disability and grew up knowing no different. Later in life, I had my independence taken away from me. I now had something to compare to. I now had to grieve the life/independence I lost.
At this point in time I was 33 years old with a son aged 12. I was used to doing everything for myself and my son. I was terrified as to how I was going to cope in general. How was I going to look after my son? I had no choice but to find other ways of achieving what I could do previously!
I’m not going to tell you life in a wheelchair is wonderful and a bed of roses. It isn’t! But it’s most certainly not a fate worse than death! Yes, you have to be a resilient & determined person. A problem-solver! As life throws many curve balls that we (disabled people) must navigate on a daily basis. Live with the knowledge that in most cases, there is always a solution to these curve balls.
I know it’s hard, but it’s not what you’ve lost that counts, it’s what you have left.
Billy Isle – Amputee & atrificial limb manufacturer
Coping
All in all, I would say it took me around the year mark to finally accept I was now a full-time wheelchair user. Learning how to do simple tasks would make me scream and cry every time! These tasks were now more difficult and took 3 times as long to accomplish. I not only had to learn how to do things from a sitting down position but I had to deal with my poor strength in my arms and hands. This made lifting and opening things difficult and painful. I was also in a manual chair which made self-propelling impossible. I felt useless and a burden. (Even the strongest of us can wonder if it is worth it)……But I can tell you, YES, IT BLOODY WELL IS!!!
Everyday life as a wheelchair user can be difficult when society & infrastructure prevents me from doing what I want but thankfully the good far outweighs the bad. The saying: “I’m only disabled due to societal barriers” is probably one of the truest sayings I’ve ever heard! If I’m visiting a venue and the only entrance is by steps, then I cannot enter. If there was more education & understanding about disabilities, I wouldn’t feel so self-conscious about my physique caused by my weak & miss-shaped bones. (I get extremely embarrassed when I shake hands or have to hand over money to a cashier as people either pull away or let money fall onto the counter).
My husband was a massive help throughout all of this. He would be positive when I wasn’t. Helped me come up with solutions that helped me complete tasks I would struggle with. In fact, he still does today. I have asked him many times to help me come up with a solution to a problem I may have.
Accepting
Being a wheelchair user has not stopped me from doing what I wanted to do. I’ve been to many places and done different things, from, Scuba Diving, a long weekend to Vegas to see Billy Idol in concert, Cruising 3 times with a 4th in the pipeline. All giving me wonderful memories that I can tell to my 4 grandchildren (at present lol). More planning is needed of course but it is so worth it!
I had to learn how to redo many things, including the simplest of things like making a cup of tea to getting dressed, all from a sitting down position. I would go to stand up and suddenly realise that I couldn’t. This tortured me every time and made me so frustrated and angry. I would take it out on anyone close to me at the time. Understanding this is all quite normal and part of the healing process is where more understanding needs to come into play. I know this helps as I (unknowingly) needed to know this after my heart attack. Just knowing other people feel the same way and that what you’re experiencing is normal can be half the battle.
Friends and family (and ourselves) forget we are grieving the loss of our old life, this grief is just like any other grief. It takes time to deal with this grief. You will go through many emotions on a daily basis. With a positive attitude and time, you WILL get there. You will learn to adapt to your new way of life!
The longer I was a wheelchair user with limited strength and grip, the more help I needed. I needed help with showering, dressing & cooking. Sitting down made tasks much harder for me than they were when I was able to stand.
Life Changes
Being a wheelchair user means (as I’ve said previously) you must learn to do things differently than you once did. This can also mean adapting your home. Unfortunately, if you own your own home, there is little to no help that you can get financially, or from your council. You have to do everything yourself. If you are a council or housing association tenant, they should be able to help you.
Your first port of call though should be to get yourself an OT (Occupational Therapist). Occupational therapy aims to improve your ability to do everyday tasks if you’re having difficulties. You can get occupational therapy free through the NHS or social services, depending on your situation. You can:
You can also pay for it yourself. The Royal College of Occupational Therapists lists qualified and registered occupational therapists.
How Can An OT Help
Occupational therapy can help you with practical tasks if you:
are physically disabled
are recovering from an illness or operation
have learning disabilities
have mental health problems
are getting older
Occupational therapists work with people of all ages and can look at all aspects of daily life in your home, school or workplace. They look at activities you find difficult and see if there’s another way you can do them.
I am in no way gonna enter the minefield of DWP benefits but, you may well be entitled to some benefits. These could include, PIP, ESA, Universal Credit and if you have someone who helps/cares for you on a daily basis, they may be entitled to a carer’s allowance. The best people to talk to is Jobcentre Plus where they have all the up-to-date information.
Don’t miss out on what you are entitled to, JCP will not voluntarily tell you what you can claim for. Speak to other disabled people to find out what other benefits there might be. Another good source of information is the CAB.
Body & Mind
Some of you reading this are thinking, I could never do that! I couldn’t cope! Let me tell you this, at first, yes it’s extremely hard to accept you need help after being so independent, I know! But once you get past this stage and you will, it does get easier, to the point of it becomes normal every day.
Mindset is paramount though, having a positive mental attitude really is the key to your coping and accepting. Another extremely important thing is to have supportive and understanding people in your life. This includes family. I was very fortunate to have family around me that were supportive and understanding. Something else that is crucial, counselling and/or supportive groups. I was sceptical until my heart attack and I joined a counselling group. This helped me understand that my feelings and attitude were very normal.
You either get better or you get bitter. It’s simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you!
Josh Shipp
Don’t let negativity in your life wherever possible, especially in your transition stages. It will hold your progress back!
My Final Thoughts
I’m living my life no differently than anyone else. I have a roof over my head, and food on the table that I am extremely grateful for. My family of two wonderful grown-up kids. I go visiting my grandkids, I holiday, I have friends, I socialise and I have sex! Would I say this is a fate worse than death? HELL NO!! Even with the trials & tribulations of daily life and some of society’s attitudes…..I seriously wouldn’t change a thing.
Sleep Deprivation | Risk To Life or Just Plain Annoying? We all know how important sleep is to be able to function on a daily basis. What happens though when we don’t get enough sleep? Lack of sleep can cause many issues, ranging from bad moods right up to heart attacks. As a lack of sleep sufferer myself, I look into this further.
Are There Different Types of Sleep Deprivation?
We’ve all experienced a bad night’s sleep and this is quite normal but even one night’s bad sleep can affect our mood right. Sleep deprivation, also known as insufficient sleep or sleeplessness, is when you have not had enough sleep. This can be chronic or acute and can vary in severity.
Many of us are so busy in life, sleep can feel like an inconvenience. I know I have felt that a few times. We think having one hour less sleep will help us achieve more the following day. Actually, it will most likely have the opposite effect. Having one night’s lack of sleep isn’t all that terrible but on the same token, it can still affect your mood. It can make you feel more tired, sluggish and unproductive.
Acute Sleep Deprivation: This is when you have no sleep or a reduction in your total sleep time, lasting one or two days. Chronic Sleep Deprivation: This is when you routinely sleep less than the amount of time required for optimal functioning. (This is what I suffer with).
Amount of Sleep Required For Optimal Functioning:
3 to 5 years -10 to 13 hours per 24 hours, including naps
6 to 12 years – 9 to 12 hours per 24 hours
13 to 18 years – 8 to 10 hours per 24 hours
Adults – 7 or more hours a night
In addition to age, other factors can affect how many hours of sleep you need. For example:
Sleep quality. If your sleep is frequently interrupted, you’re not getting quality sleep. The quality of your sleep is just as important as the quantity.
Previous sleep deprivation. If you’re sleep deprived, the amount of sleep you need increases.
Pregnancy. Changes in hormone levels and physical discomfort can result in poor sleep quality.
Ageing. Older adults need about the same amount of sleep as younger adults. As you get older, however, your sleeping patterns might change. Older adults tend to sleep more lightly, take longer to start sleeping and sleep for shorter time spans than younger adults. Older adults also tend to wake up multiple times during the night.
Of course, if you have any concerns, please see your own GP for more advice and help.
Chronic sleep can have a serious effect on your mental and physical health. Having a good night’s sleep is imperative so your body can heal and repair itself. This can include your heart and blood vessels. It also gives your immune and cardiovascular systems a rest and allows other organs to be restored.
Research claims that those of us who frequently get fewer than six hours a night’s sleep (that’s me) are significantly more at risk of having a stroke or heart disease. There is evidence that not sleeping enough may ramp up the “fight or flight” response to stress, which then releases hormones that speed up our heart rate and raises our blood pressure.
Hmm, not good for someone like myself then who has already had a heart attack and now living with heart failure! Thankfully the amount of sleep I’m getting is starting to improve.
If you are having poor sleep regularly, you are also at risk of serious medical conditions, which can include obesity and diabetes. Lack of sleep can increase insulin resistance, contributing to an increased risk of getting type 2 diabetes and heart disease.
Lack of sleep (sleep deprivation) obviously causes tiredness. This will have an impact on some people’s driving ability, reaction times and judgement. So don’t go making any financial or life-changing decisions.
Signs of Sleep Deprivation
Out of the 12 named above, I would say that I experience at least 10 of them daily.
What Can Cause Sleep Deprivation
Many things can cause sleep deprivation, including, stress, depression, poor eating habits, illness, disabilities or sleep apnea to name a few. The odd night’s bad sleep is not a health risk but chronic poor sleep can be. The likelihood is that you could develop dementia, heart disease, type 2 diabetes and even cancers of the breast, colon, ovaries and prostate.
We all know how sleep loss can affect our ability to function like daily tasks, working and driving. It is extremely important to get enough sleep to not only complete our daily tasks but driving/machinery can cause deaths if we are too tired to operate them properly.
How Can You Improve Your Sleep?
Unfortunately, there is no magic cure but (and I say this lightly as this won’t solve or help everyone’s lack of sleep) a few life changes could be all you need to do to improve your sleep pattern. For example:
Keeping all electronic devices out of your bedroom that you would be tempted to use, laptops, TVs, mobile phones (of course, some of us NEED to have ours close to us at night)
Keep your bedroom cool, dark and quiet
Make sure your bed is as comfortable and up-to-date as possible (I know my mattress is partly the reason for my lack of sleep, thankfully new one coming soon)
Avoid foods & drinks that hinder your sleep. – Caffeine etc.
Stop using screen time for at least an hour before going to bed.
Take a warm bath with soothing scents and why not put on some relaxing music too (as long as it’s quiet though)
Reading, this is known to put many people to sleep
Go to bed at the same time each night. Get into a good routine
Diet, obviously a good varied healthy diet will help your health all round
My Experience of Sleep Deprivation
My experience of sleep deprivation is awful. You do believe you are going insane. Mine started (unknowingly to me) due to my mattress. I had constant pain in my hips and back. I would spend the night (and still do) tossing and turning throughout the night. I’d lie on my side, 5 minutes later, on my back, again 5 minutes later on my other side. This rotation just went on & on & on all through the night. Turning from side to side means I have to sit up to do this, so I was constantly being woken up. I have been like this for a very very long time.
Ironically, I didn’t connect my pain to my mattress, although this is not the only reason for my pain. See, lack of sleep makes your mind do strange things. Anyway, My daughter kindly offered us to try her mattress to see if there was any difference. I was so surprised when it did. Well that was it, a new mattress was definitely on the cards!ves tomorrow, (at the time of writing this) so fingers crossed it makes a world of difference to my sleep.
I suffer from brain fog resulting from my heart attack 6 years ago, this was really improving until my lack of sleep started well over a year ago. My lack of sleep/brain fog can now make me stop mid sentence as I will forget what I was talking about or what I was about to say. Retaining information can be very difficult, I have a real problem remembering people’s names. I mean worse than I used to be haha.
My Mood
My moods would be terrible. Well I say moods but in reality I probably only had two moods…..Anger and frustration! I felt so angry all of the time (thankfully it’s getting better). I think some of my anger still stems from my heart attack and how I was treated by certain medical staff, departments (a story for another time).
As we have been using our daughter’s mattress, my sleep is improving and therefore, so is my mood. Much to my family’s relief. I would get so snappy and constantly moan about the smallest of things and at times felt so much frustration and anger it worried me. I would get so frustrated when I couldn’t function how I wanted. My mind would get so foggy about different details and what I wanted to say. Stupid words would completely evaid my mind. (Probably why my blogging slowed right down).
I would forget appointments, arangements with friends, thankfully my hubby was around to remind me. The downside to this though was it only highlighted how bad my mind was getting which would make me angry with myself and take it out on others!
Fatigue
Oh boy, tired? I felt I could sleep for a month and still not feel like I had any sleep. Fatigue is pretty awful to say the least. My body ached all day/night, painkillers never really help. I felt like everything was very difficult to do. My limbs felt a tonne wieght making the simplest of tasks harder and longer to do. I was so fed up feeling tired all the time, I didn’t want to socialise with anyone, even my family. I bascially lost interest in everything, music, reading, learning, blogging, everything I used to love to do was now my worst nightmare!
My anxiety got worse, which then made my IBS worse which only made me want to stay home all the more. Isolation was setting in.
Then the worst news I could have imagined getting, I got. I was diagnosed with breast cancer!
Breast Cancer
If I thought things were bad before, they just got a whole lot worse. I’m not going to go into it here and now as you can read my breast cancer journey here. What I will say though, is I spent the next 12 months running on empty and auto pilot. Going through something like this gives you no time to think or deal with your emotions. Everything moves at such a fast pace (ovbiously) so you feel like you are constantly on the go mentally & physically.
Thankfully, after a wonderful team of experts, 2 surgeries and Radiotherapy, I have now been given the all clear. I did mention above how chronic lack of sleep can cause some cancers, it does beg the question if this contributed in any way to mine. (I had something I wanted to add here but becasue I quickly edited a section above, I have completely forgotten what I wanted to add. So frustrating)!
Conclusion
Just as our bodies need food and water to keep healthy and in proper working order, it also needs sleep. Sleep enables our bodies to heal itself and restore chemical balance. It helps our brains to forge new thought connections and helps memory retention. Makes sense then why lack of sleep exasperates memory loss. It also does a wonderful thing of lifting our moods and making us happy.
If you don’t get enough sleep, everything previously mentioned can and will only cause poor qulity of life, I know, I’m living it.
Small Claims Court As Last Resort – Know Your Consumer Rights! They say knowledge is power. It certainly is when it comes to your consumer rights. Knowing what you are legally entitled to and how to put your rights into action, can possibly save you from having to take your claim through the small claims court and save you money!
Over the yearsI have fought many consumer rights claims.These have included getting compensation as my electric wheelchair caused £4000 damage to my home and getting a full refund from a holiday park disaster! I’ve learned so much and a few tips along the way. Sharing what I have done, I hope helps you too. I will say though, it’s not an easy task and you do need to have the patience of a saint and more importantly, the determination to see it through to the end.
What Is The Consumer Rights Act?
The Consumer Rights Act came into force on 1 October 2015. This meant from that date new consumer rights became law covering:
what should happen when goods are faulty;
what should happen when digital content is faulty;
how services should match up to what has been agreed, and what should happen when they do not, or when they are not provided with reasonable care and skill;
unfair terms in a contract;
what happens when a business is acting in a way which isn’t competitive;
written notice for routine inspections by public enforcers, such as Trading Standards; and
greater flexibility for public enforcers, such as Trading Standards, to respond to breaches of consumer law, such as seeking redress for consumers who have suffered harm.
Most of these changes were important updates to existing laws. But two new areas of law were also introduced.
For the first time rights on digital content have been set out in legislation. The Act gives consumers a clear right to the repair or replacement of faulty digital content, such as online films and games, music downloads and e-books. The law here had been unclear and this change has brought us up to date with how digital products have evolved.
There are now also new, clear rules for what should happen if a service is not provided with reasonable care and skill or as agreed. For example, the business that provided the service must bring it into line with what was agreed with the customer or, if this is not practical, must give some money back.
The Consumer Rights Act 2015 stands alongside Regulations to create a greatly simplified body of consumer law. Taken together, they set out the basic rules which govern how consumers buy and businesses sell to them in the UK.
When spending £100 or more & up to £30,000, use a credit card. Your credit card company has a LEGAL responsibility to come to the rescue if there’s a problem, called (section 75)
Debit cards offer less protection but do have a chargeback facility for purchases under £100
Look out for scams. These can be via text and/or emails
Read a companies T&Cs, delivery & returns policies
Record your phone calls – No, it’s not illegal in the UK
Always try resolving your issue with the company/seller first
Trusted Sellers
We have all at one point or another bought products online. How can you tell if a company/seller is legit? It can be a minefield and sometimes challenging to tell.
Using the company name – Visiting Trustpilot is an excellent way to see if others have bought from them and what they say. Stupidly I only visited Trustpilot once things went wrong with one purchase, to find the reviews had been awful. I didn’t make that mistake again! Also, I stay away from companies/sellers that have 0 reviews.
Facebook is famous for pop-up sellers (not Marketplace). I’m talking about the ads in your timeline advertising wonderful inventions that make you look younger, thinner, richer etc. – I bought make-up from one of these sellers and had to go through Paypal to get my money back as I never received my items. When searching for the company website, (where bought the products from) it had disappeared overnight! Another tip, look on Amazon or eBay, I bet you’ll find the same product there too and be better protected.
Places like eBay, Amazon and high street shops are always the best way to make purchases. They come with their own T&C and you are protected if/when things do go wrong. I have found Amazon to be the easiest place if needing to return anything.
Paypal
Buyer Protection covers all eligible purchases where PayPal is used, as well as payments made through our website. To take advantage of Buyer Protection, we require, among other things, that PayPal accounts be kept in good standing and ask that a dispute be filed within 180 days of your purchase or payment, Terms and Conditions apply.
I have used Paypal in the past when things have gone wrong with sellers. You have to obviously fill in a form with all the information. Put in everything, even if you don’t think it’s relevant. You want to make sure you give Paypal everything they need. You literally get one shot at putting your case across! I have had them refuse my claim as I didn’t include enough info.
Chargeback allows you to ask your card provider to give you a refund on your credit or debit card if the goods or services you bought don’t arrive, are faulty or don’t match the description of what you ordered.
When a card transaction is disputed, you may be able to use chargeback to reverse the payment and recoup your money.
How Does It Work?
A chargeback happens when the bank removes the funds from the retailer’s bank account and returns them to you – although this can be challenged by the retailer if they feel the claim is unjustified.
Chargeback is a voluntary scheme. It is not the same as claiming money back under Section 75 (more on that in a moment).
Am I Eligible To Make A Claim?
If goods or services you bought with a card either don’t turn up, are faulty or damaged, or if they are different from the description then you may have a case to make a chargeback claim.
You should first try to get a refund from the retailer. If they refuse or if they have gone bust, you can contact your debit or credit card provider, who will then contact the retailer’s bank to make the claim.
Chargeback could also be used should the retailer charge you multiple times for the same item, if they go into administration or even if you have been the victim of fraud and did not authorise the payment.
Section 75 is an important UK consumer protection law made in the 1970s that means your credit provider must take the same responsibility as the retailer if things go wrong with a purchase. Yet it doesn’t work on all purchases – just those costing a certain amount:
Buy something costing more than £100 and less than £30,000 on your credit card, and your card company has a LEGAL responsibility to come to the rescue if there’s a problem.
If there’s a problem with something you’ve bought on credit. The lender is as responsible for putting things right as the company you bought from. In other words, if what you’ve bought is faulty, broken or doesn’t arrive. The credit provider is legally obliged to put it right (see our Consumer Rights guide for exact definitions).
For Section 75 to work, there has to be a direct link between you, the creditor (usually your credit card issuer), and the supplier (the place you’re buying from). For example, something you bought in a shop with a credit card would be covered, but if you used your credit card to withdraw cash from an ATM and then spent it on the same item, you wouldn’t be protected by Section 75 as the direct link would have been broken. See a detailed breakdown of what Section 75 covers.
The product or service you’re buying must cost over £100 and not more than £30,000 to be covered. Crucially, though, you’re still covered even if you only pay a deposit of 1p towards an eligible purchase on credit. You’re also covered if you’ve since closed the credit account you made the purchase with.
We have all thought about it at some point, whether it’s for proof of what was said during an argument or to just record a meeting or conversation, but is recording conversations actually legal?
When it comes to discreetly recording conversations, calls or even filming someone, the law in the UK varies between individuals and businesses and it’s important to understand the distinctions before you attempt it.
Nowadays, the range of technology at our disposal means it is easy to record conversations without the other participant’s knowledge – but does that mean it’s ethical, and can it be admitted as evidence in court? (Most mobiles today have a built-in phone recorder, you just need to switch it on).
(I have recently taken to recording all my calls made to companies. My claim against Palins holiday park would have been much easier had I recorded my initial phone call with them. I was told some information on the phone that was not true. When I made my initial complaint, it was denied that I had even been told this).
Is It Illegal To Record A Conversation In Secret?
Recording a conversation in secret is not a criminal offence and is not prohibited. As long as the recording is for personal use you don’t need to obtain consent or let the other person know.
Things change if the matter is addressed with a claim for damages or if the recordings have been shared without the consent of the participants. Even worse, if the recording is sold to third parties or released in public without the consent of the participants then this could be considered a criminal offence.
Can A Private Recording Be Submitted As Evidence In Court?
A private recording can be submitted as evidence, but with some conditions:
A recording may be relied on in evidence if the court gives permission
An application for permission should be made on form C2
The recording should be made available to other parties before any hearing to consider its admissibility.
Covert recordings of children should rarely if ever, be admitted as evidence, according to section 13(4) of the Children and Families Act 2014.
Cold calls or unexpected emails or messages should raise suspicion, especially if you’re asked to give personal or payment details. It’s very unusual for legitimate organisations to contact you and ask for sensitive information if you’re not expecting them to. If you’re not 100% convinced about the identity of the caller, hang up and contact the company directly.
Never share your personal details with anyone if you can’t confirm they are who they say they are. Phone scammers will often try and get valuable personal data from you.
Scam websites often have vague contact details. PO box, premium rate number (starting ‘09’) or a mobile number. If anything goes wrong it’s important you can contact those involved. This will be difficult if you don’t have accurate contact information.
It’s important you can discuss any agreements with your friends, family or advisors. Asking you to keep quiet is a way to keep you away from the advice and support you need in making a decision.
Scams will often promise high returns for very little financial commitment. They may even say that a deal is too good to miss. Use your common sense, if a deal is too good to be true, it inevitably is.
Fraudsters often try to hurry your decision-making. Don’t let anyone make you feel under pressure – it’s OK to take a break and think things through if you’re not sure.
Emails or messages littered with spelling and grammar mistakes are scam giveaways. Legitimate organisations will rarely if ever, make spelling or grammatical mistakes in their emails to you because they’ve been put together by professionals and checked before they’re sent.
What to do if you’ve been scammed
Fraudsters are very cunning in their tactics so it’s not always immediately obvious that you’ve been scammed, or who you should report it to.
But there are ways to identify different types of scams, and organisations that can help you if you are scammed. Read the following guides to find out more…
In my experience, how you put yourself across (knowing your rights and being factual), is probably the most important but hardest part of all, in fighting for your consumer rights.
I remember a case my husband was trying to win regarding a caravan fire. He wasn’t able to convey the case very well but as it was his Dad’s caravan, I didn’t want to butt in too much. The insurance company took this opportunity to fob him off with a pittance amount of compensation. (This actually went against what was written in the policy his Dad took out with the company).
In the end, I took over as I felt hubby had struggled enough in these phone calls and was annoyed by how the insurance company was abusing his lack of knowledge against him.
The gentleman I spoke to unbelievably, turned round to me and said, “oh, I can see I’m talking to someone who knows what they’re doing”. (The cheek). I have to say I was quite taken aback by this comment but needless to say, happy as the company was now aware they weren’t going to be able to fob us off anymore! The result was the company offering nine times the amount they had previously offered. 1 up to the consumer!
A recent claim of ours, a Section 75 claim regarding our holiday park nightmare. The correct words were not used in describing why we wanted a section 75 claim, this resulted in the credit card company saying we didn’t have a claim to take forward. After doing more research, we found the correct terminology and contacted the CC company again, who this time took the case and we won.
Research & Determination
I can’t stress enough about researching whatever your particular consumer issue is. It will be the basis of your claim/case.
Read other consumer stories similar to yours
Look up legal websites that may offer some free tips etc.
Write/type down your thoughts, snippets of information you may find, legal terminology you want to use
Make sure you use consumer rights jargon (no, it’s not as complicated as it sounds, copy/paste is a wonderful feature). Not fit for purpose, not as described and breach of contract are some of the consumer rights jargon that will get most companies etc. attention. (Making sure you use the right one is the key).
Make drafts of letters/email before sending. For any and all correspondence you send or receive, make sure to keep copies. Keep them somewhere safe. You may need them as proof or to refer back to at a later date.
If you are trying to win a claim of a significant amount, be prepared for it to take some time. My claim for £4000 from my wheelchair repairers took 13 months. If you read my NHS wheelchair service: Is yours “fit for purpose”? blog, you will see why it took so long and the type of consumer rights terminology I used. Some companies will most definitely drag their feet in the hope you will give up…..DON’T!!!
* Disclaimer
All information supplied, is for consumers based in the UK.While every effort‘s been made to ensure the information in my blog is accurate.It doesn’t constitute legal advice tailored to your individual circumstances. If you act on it, you acknowledge that you do so at your own risk. I can’t assume responsibility and don’t accept liability for any damage or loss which may arise as a result of your reliance upon it.Please speak with a solicitor specialising in consumer law to get professional advice.
Facilities available to disabled people – There are many facilities available to disabled people. The problem is, not everyone is aware of them, hence why I have written this blog. Today, I hope you find a facility that you weren’t aware of before and indeed benefit from it.
I will talk about Motability, Taxi card schemes, freedom passes and even Radar keys. Don’t worry if you are unfamiliar with any of these, you will understand more as I take you through them!
Eurokey Project
The Eurokey Projectis a facility similar to the Raday key. It enables physically impaired people to independently gain access to disabled sanitary facilities and facilities with a unit key (presumably) across Europe. At the time of writing this, there is currently a time frame of up to 8 weeks for orders to be processed.
Cost: Key – 28.90 Euros Key with Locus Disabled Toilet Directory: 30 Euros (correct at the time of writing this). Please always check the website for an up-to-date price.
Eligibility
The key is only handed out to people who are dependent on disabled toilets.
The German severely disabled person’s pass is considered an entitlement if • the mark: aG, B, H, or BL • or the mark G and the GdB from 70 and upwards is included.
As soon as the severely disabled person’s pass or proof of entitlement is available or has been transmitted with the order, we will send you the invoice in advance.
The following are still entitled to subscribe:
severely/exceptionally handicapped;
Wheelchair user;
stoma carriers;
Blind woman;
severely disabled persons who are in need of assistance and may need an assistant;
multiple sclerosis,
Crohn’s disease,
Ulcerative colitis sufferers and
People with chronic bladder/bowel disease.
Medical proof is always considered sufficient if a disability cannot be proven otherwise. This applies in particular to persons from countries that do not have a comparable identification system. The European parking card for severely disabled persons can also be used as proof here.
Just Can’t Wait Toilet Card is from the Bladder and Bowel Community. They use the universally acknowledged W.C. signage, giving you the benefit of discreet and clear communication for those moments when you just can’t wait to use the toilet.
The Just Can’t Wait card is now available to download to your phone.
Disabled Persons Railcard can save you a 1/3 off train travel for you and an adult companion. Average savings of up to £91. They are available digitally or as plastic cards.
Eligibility
If you are disabled or have a progressive medical condition you are eligible for the Disabled Persons Railcard if you:
in receipt of Personal Independence Payment (PIP) or Adult Disability Payment (ADP)
receive Disability Living Allowance (DLA) or Child Disability Payment (CDP) at either:
the higher or lower rate for the mobility component, or
the higher or middle rate for the care component
visual impairment
hearing impairment
epilepsy
receive Attendance Allowance, Severe Disablement Allowance or Pension Age Disability Payment (PADP)
get War Pensioner’s Mobility Supplement
receive War or Service Disablement Pension for 80% or more disability
buy or lease a vehicle through the Motability scheme
The Fuel Service app provides disabled drivers with all they need to refuel their cars. FuelService tells you which nearby stations have assistants available who will refuel your car. You can also use fuelService by dialling our interactive voice service or by sending an SMS TXT message.
Blue Badges help people with disabilities or health conditions park closer to their destination. You can apply for a badge for yourself, on behalf of somebody else or an organisation that transports people that need a Blue Badge.
People who automatically get a Blue Badge
You automatically qualify for a Blue Badge if you are aged 3 or over and at least one of the following applies:
receive a Personal Independence Payment (PIP) because you can’t walk more than 50 metres (a score of 8 points or more under the ‘moving around’ activity of the mobility component)
registered blind (severely sight impaired)
you receive a War Pensioners’ Mobility Supplement
received a lump sum benefit within tariff levels 1 to 8 of the Armed Forces and Reserve Forces (Compensation) Scheme and have been certified as having a permanent and substantial disability that causes inability to walk or very considerable difficulty in walking
you receive the mobility component of PIP and have obtained 10 points specifically for descriptor E under the ‘planning and following journeys’ activity, on the grounds that you are unable to undertake any journey because it would cause you overwhelming psychological distress
Eligibility
There are many other reasons you may be entitled to get a blue badge, please visit the website for a full breakdown and more information.
Cost: Individual councils charge different prices, please contact your local council for more information.
Motability is a scheme where you can exchange your qualifying mobility allowance for a brand-new car, Wheelchair Accessible Vehicle (WAV), scooter or powered wheelchair.
Freedom Pass – The travel pass for disabled people allows free travel across London and free bus journeys nationally. A Disabled Freedom Pass is valid all day every day. London Councils fund all the journeys that are made at those times.
Eligibility
To be eligible for a disabled persons Freedom Pass:
Taxicard offers subsidised travel in licensed taxis and private hire vehicles to London residents with serious mobility impairments or who are severely sight impaired. It enables members who have difficulty in using buses, trains and tubes to get out and about.
Radar Key The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country.
Eligibility
None
Cost: £5.00 (price correct at time of writing this)
I haven’t gone into too much detail as each website explains things about each facility and there is no point boring you with repeating the information. I hope you have found something that helps you and you can benefit from. Of course, if you have any questions, do drop me a line and I will do my best to help you.
As I become aware of more facilities, I will add them to this list so keep checking back. If you know of a facility that can help disabled people, please leave a comment below.
Wheelchair Life – Ignorance, Personal Space Invasion & Damage! – I have been a full-time wheelchair user for approx 18 years now. During this time, I have been sat on, kidnapped in a foreign country, (yes, you read that right) climbed over, all by adults!! As a wheelchair user, forget personal space, you become a public leaning post and you are invisible!
My Wheelchair
I have an Invacare Spectra XTR2 electric indoor/outdoor wheelchair with tilt/recline. The price of my chair with tilt/recline is approx £5,500. I’m lucky enough to be eligible for an NHS electric wheelchair. (Many disabled people are not and have to purchase their wheelchairs privately). As with everything in life, there are pros & cons when taking either route. I will discuss this later on.
The price of wheelchairs (both manual and electric) can cost well in excess of £10,000. That’s the price of a family car and when the average life span of any wheelchair is 4-5 years, this can be too expensive and unreachable for a lot of disabled people!
The more modifications that are needed, like tilt/recline, elevated footrest, bigger batteries etc. all add to the cost. Recline alone is around £1000 to have put onto a chair. Can you begin to understand why we are so protective over our wheelchairs?
I’m sure most if not all full-time wheelchair users will agree when I say my wheelchair to me is the equivalent of your legs to you! Without my wheelchair, I would not even be able to get out of bed, let alone do anything else! I wouldn’t be able to live my life!
Boring!
Wheelchairs as a whole can be very boring and clinical looking. Thankfully, manufacturers are becoming more aware that not all disabled people want this. Some of us, like myself, like to pimp our rides (so to speak). Therefore, I “pimp my ride” as shown in the image above. I come up with ideas to dress up my chair and then hubby makes my ideas a reality. I feel, that my wheelchair is an extension of me and my personality, so why shouldn’t I have it portray that?
As my chair is now 5 years old and I’m unsure what chair will be offered to me by the NHS (past experiences have not made me hopeful) I recently went to a wheelchair company to see what was on the market that would suit my needs. I found my perfect chair but it would cost me £10,000. The main things I need on my chair outside of what comes as standard are: electric tilt/recline, swing away joystick and swing away leg rests. Not a lot maybe but the electric recline alone chucks on an extra grand.
While at the showroom, I saw some wicked colourful wheels on a manual wheelchair with various frame colours. When I have to remove my handmade covers and accessories from my chair, I feel like I’m in a completely different chair and it actually feels depressing sitting in it. I feel drab and dreary and can’t wait to get my covers etc back onto my chair!
As I am typing this blog up, I received an appointment to go for a new wheelchair assessment at my wheelchair service, (more on this later) but I just wanted to share that the new chair I will be getting is exactly the same chair I fell in love with at the showroom. Best part? I can change the colour of the shrouds on the chair. I am so excited!
More Than One Way to Get A Chair
To my knowledge, there are a couple of ways to get a manual or electric wheelchair:
Purchase a brand new chair privately via a showroom
Buy a new/second-hand chair on places like eBay or Amazon
Be referred to your local NHS wheelchair service (eligibility required)
Loan scheme a brand new chair via Motability (eligibility required)
I’ve created a pros & cons file for you to download below if you wish:
If I’m going somewhere for the first time, I have to do plenty of research before venturing out. This will include:
Is your venue/restaurant/pub accessible? Do you have level entry? If steps, how many & how high? (My electric chair can manage a small step). Company websites fail terribly at supplying this sort of information, which then means many phone calls or emails to find this information. (very time-consuming, which in all fairness is totally unnecessary!)
Do you have a disabled toilet? Will I find it being used as a storage room, (too many are used this way)?
Can my family sit with me if going to a show, or will we be split up due to only having one carer/PA space?
Do you have disabled parking?
Internal steps?
Width of doorways
The list just goes on and on! The most frustrating thing is when you are told one thing, then arrive and find it’s nothing like what you were told. Most of the time, it means having to either find somewhere else to go or worse, go back home!!! For example. I was going out for a meal with family that came to visit. The venue was told there would be one wheelchair user in our party. When we arrived, the table we were taken to was higher than my head, with tall stools sitting around it!
When I looked funny at the waitress, she had NO IDEA what the issue was. I had to ask her how she thought I would be able to eat a meal at the table. The penny dropped! Thankfully there was another table vacant that was more suited. It’s stupid things like this that make going out anywhere frustrating and embarrassing and make you feel a burden to the people you are out with.
If companies were penalised for this treatment of disabled people, I’m pretty sure things would change very rapidly and drastically. Access would almost be perfect. Other countries can do it, so why not here? I am ashamed of how disabled people are treated in this country, I truly am.
Personal Space
I’ve put metal spikes across the top of my headrest as I’m sick and tired of people who think it’s ok to lean on it!! IT’S NOT!!! (No, it isn’t illegal, I asked a police offer to be sure).
I’ve Scoliosis and suffer from severe back pain a lot of the time. When someone decides to lean on my headrest suddenly, it makes my chair jolt, this makes me jump and jars my back. This causes pain that can last several days for me. So my spikes now prevent this from happening.
Many wheelchairs cost an absolute fortune. Do you really want to be responsible for breaking something and having to pay the cost of repairs which could run into hundreds of pounds? NO? Think before using someone’s chair as a leaning post, shopping trolley or hanger! More importantly, you have no idea what a person’s disability is and how it affects a person, so you could be causing harm to the wheelchair user.
NEVER, EVER just push a wheelchair (while the person is still in the chair) without explicit permission from the wheelchair user themselves. It’s scary, invading personal space and can be dangerous!
Holiday Trauma
I was in Tunisia on holiday with my husband. We visited a local market and were browsing one of the stalls when a complete stranger grabbed my manual wheelchair and started pushing me away. I literally screamed out for hubby but couldn’t see him. I had no idea where I was being taken and I couldn’t see hubby. This terrified me, all sorts were running through my mind at the time.
It turned out, due to the jewellery I was wearing, this man saw this and took me to what I assumed to be his friend’s jewellery shop. Just so I could get away, I ended up buying a bracelet and finally hubby caught up with me and we left.
Travelling
In my own vehicle, I’m fine. I know my chair is tied down securely and most importantly, safe! My WAV has been made to my requirements. Anywhere else though, is a roll-of-the-dice situation. Let’s take the biggie, air travel!
Airlines, baggage handlers and staff, in general, do not treat our wheelchairs with the respect they deserve! It angers me so much when I hear about another person having their wheelchair damaged or destroyed purely because airlines are ignorant and/or incompetent.
This kind of treatment of our wheelchairs (which is primarily the same as ableds LEGS) is disgusting and definitely puts disabled people off from flying. Maybe this is the airline’s intention!
Wheelchair Damage
On average, airlines damage 28 wheelchairs a day in the United States ALONE! Can you imagine how high that number raises worldwide? If airlines broke that many passengers’ legs, there would be uproar and probably no longer be in operation! Why then, is it ok to break our metaphorical legs?
If our chairs are broken, we too are out of action, actually, we are worse off. Most disabled people’s wheelchairs are made to prescription that fits the person using it. To be without our chairs, just doesn’t mean we can no longer enjoy whatever trip we were taking, we are now in severe pain having to use a mainstream non prescription off the shelf wheelchair.
Some wheelchair users rely on headrests, body straps to help posture and head controls so they can move their own chair. To be without these is beyond comprehension! More importantly, for airlines to be allowed to continue this treatment without any repercussions is discrimination and downright disgusting!!
Palins Holiday Park – Disgusting, Misleading & Nothing To Do! – I would have given no stars only the location of the park was pretty good for our needs. Booking a holiday as a disabled person is a major task all in itself. Accessible holidays are far too often missing or already booked up. So when you find the holiday that seems to offer exactly what you need.The last thing you want is to be made feel that you have been purposefully misled into that booking.
Telephone Conversation
We visit Wales as often as possible, to visit family. So we checked out several different holiday parks online that were in North Wales. We found all accessible caravans were booked up or owner-only parks. When we visited Palins Holiday Park they advertised a silver-accessible caravan available for the week we wanted to go.
Being a full-time wheelchair user, I wanted to contact the park directly. I wanted to have some of my questions answered before making a booking. In this conversation, both myself and my husband were informed their show bar would only be open at weekends. (Conversation was on speaker). We were told not to worry as their pub Magpie & Stump has entertainment every night!
Palins Website
When visiting Palins website, you are greeted with a lovely sunset and family on the beach. Their website says:
Enjoy a FUN PACKED family holiday in a quality caravan at a SUPERIOR HOLIDAY PARK situated on the beautiful NORTH WALES COAST where the mountains meet the sea.
Perfectly located 1 mile from Rhyl in the holiday resort of Towyn, Palins is a family owned caravan holiday park which has been operating for over 80 years. Whether you’re looking for an action packed or relaxing break our warm and welcoming staff will ensure you have an enjoyable stay.
Palins Holiday Park
I can assure you, most of that is untrue! Our (and others) experience was the complete opposite.
The Park
Park Entrance
When we arrived at the park, our first impression was oh my god what have we done! The park looked excruciatingly outdated, run-down, and not very clean. Of course, we know first impressions can be somewhat misleading and even forgiven if you end up having a good holiday. Therefore, we tried to stay positive but unfortunately, this was not to last very much longer.
Hubby went and got the key to our caravan from reception. Our caravan was situated literally around the corner from the main complex. We could physically look into the smoking area at the back of their pub from our caravan windows. This was unfortunate, as they were having karaoke our first night there. (The only bit of entertainment supplied the whole week we were there). The loud singing, shouting and all sorts went on past 1 a.m.
We found out the pub doesn’t have entertainment every night. Just Karaoke on a Saturday when they are not showing football! If you enjoy football and crappy music on the TV, then this pub is for you.
On-Site Facilities
Palins advertise on their website, the following:
Childrens Play Area and Amusements – For the children we have the Alamo Fort where there are a selection of swings, slides, climbing frames and the exciting tube & pod. Our all weather penalty shoot-out area or Amusement Arcade.
Palins Indoor heated fun pool –
If the sun refuses to shine, for a nominal charge, you can while away a few hours in the relaxed atmosphere of our heated indoor funpool with its water chute and toddlers area. I can’t comment as they had no hoist, so couldn’t use it. By the way, Palins charge you to use the pool!
Fun for the kids – For the children we have the Alamo Fort where there are a selection of swings, slides, climbing frames and the exciting tube & pod, Our all weather penalty shoot out area and Amusement Arcade with a large selection of childrens rides and games.
Alamo Fort – Arcade – (I assume) The All-Weather Penalty Shoot Out?
Entertainment
For your evening entertainment we have Palins Cabaret Club
Live Entertainment For The WHOLE FAMILY
Children’s Competitions
Karaoke
Cash Bingo
Disco
Cyril The Seahorse
The cash bingo was played on the Saturday we arrived, no other night. Palins never checked anyone’s age. Hubby saw one child who looked around 11 years old with bingo tickets in front of them. (They are supposed to check no one under 18 plays as it’s a form of gambling!)
To play bingo again, we had to visit another holiday park for this which incidentally did check players’ age! As for any other entertainment, NONE whatsoever was supplied! I felt for the kids, not even Cyril the seahorse made an appearance!
The Showbar – Never opened for entertainment the whole week.
Notice how the Children’s play area and amusements section and the Fun for the kid’s section are pretty much identical. A great way to make your web page look fuller & to look like you offer a great number of facilities.
The park had a chip shop, convenience store and launderette. The launderette seemed to be the only thing open all week. The on-site chip shop closed from Monday and never reopened until the following Friday. The on-site shop also closed every day from 1 pm on the Monday.
Accessible Caravan
We booked a silver-accessible caravan for one week (Sat-Sat). Well, what can I say? It was the most basic, dirty, rundown budget caravan you could imagine. We paid for the caravan, bedding and making up of the beds. Yes, you are charged to have linen on your bed and have the beds made for your arrival. Oh, by the way, we were told they don’t have double beds in the accessible van so you have to pay for two single beds to be made rather than one double?
The caravan had old and dated curtains that looked filthy, in ALL the rooms. The curtain rails were so rusty they were difficult to open & close. No nets, so privacy is an issue. All of the laminate edging on the table & units in the lounge were peeling, making them very sharp. The TV looked more like a portable than a full-size TV. The decor was very grubby looking like something out of the 70’s and definitely in need of major upgrading.
Again, Palins website states: Silver units offer a high standard and comfortable accommodation at an affordable price. In all fairness, there was nothing comfortable or of a high standard in our caravan.
Advertised Bronze CaravanAdvertised Silver CaravanLoungeI have merged 2 images of the lounge to give a complete picture of the lounge.
The mattresses used were of such poor quality you could feel every single spring, plus it had a label saying, Haven? I really wouldn’t be surprised if these were 2nd hand mattressed from Haven. The bed caused me so much pain, I am still 2 weeks on in a lot of pain.
Unit features:
Access Ramp as Standard – It’s not an accessible caravan without one!
Sliding Doors
Wheelchair access
Fully accessible bathroom with appropriate facilities. – That’s if you can get into it. I could not enter/exit the bathroom and go directly into the bedroom. I had to go down into the lounge to be able to turn around to then be able to get into the bedroom. As nets are not provided, privacy is an issue after showering. The park is aware this is an accessible caravan, so nets would make all the difference. (I know not necessarily the park’s fault but the van doesn’t allow enough space for an electric wheelchair without foot plates to turn directly into the bedroom and my chair is on the smaller side too).
Doorway of the bathroom looking into the doorway of the bedroom
What’s included…
Gas and electric
Beds made up for a nominal charge
TV in the lounge with freeview
Microwave, kettle, toaster, cutlery and crockery – Grubby, dirty and all in need of a good scrub before using and in need of upgrading.
Beds made up for a nominal charge? Then why is it in the “what’s included” section? My understanding is if something is “included”, there is no extra charge? Right? What we got were extremely thin sheets, with some stains which was lazily put on the bed. The quilt was left folded up on top (image below)
For Hire…
Dvd player £10 deposit & £10 week
Double Bed Made Up £4
Single Bed Made Up £3
Iron £5 deposit & £5 week
Travel cot £20 deposit & £20 week
Wheelchair £20 deposit & £20 week
Pushchair £10 deposit & £10 week
Beds made up is included and for hire? Which is it Palins?
So if you want to hire a DVD player, an iron and have one double bed and two single beds made up, this is going to set you back £40…..REALLY? Who’s got that kind of money when holidaying with their partner, kids and maybe parents? For a silver-grade caravan, you should not be expected to pay for beds to be made up.
Both my husband and I visited all the holiday parks along the same stretch of road (approx 2 miles long, 8-10 holiday parks in total) and NOT one of them charged for linen or for beds to be made up, this was always included in the price. A few were very shocked at this cost.
Palins Silver Caravan Gallery
Made up bedsWet RoomTwin bedroomGally KitchenSofa with TableFireplace – You Can See the Edges LiftingThe LoungeThe only place to eat – 2 Seater Sofa, 2 Stools for a Caravan that Sleeps 6?Storage in twin roomSmoking area at the back of the pub – View from our caravanThe poolThe ArcadeRusted Curtain RailPiece of Wood with Nails Found Under Sofa Seat CushionMis-sized Toilet Seat
I was horrified at finding the piece of wood with 2 large nails, in fact, this was the breaking point. My granddaughter who is only 1 could have had a very nasty accident. When we did finally complain, the manager brushed it off like it was an everyday occurrence (prob is) and this made matters worse and made me angrier.
It was at this point I’d had enough. Thursday I went to reception to complain! The manager was arrogant, flippant, dismissive and downright rude! Customer service just doesn’t exist at this park. At least not with the so-called park manager!!
In complete contrast though, the holiday park situated right next door (Lyons Oakfield) allowed us to take look at their accessible caravan which is also a silver grade. It is worlds apart from what we were given by Palins.
The Lounge – With NetsGalley KitchenDouble Bedroom with on-suite bathroomLoungeWetroomTable & Chairs – Overhead Skylight
We couldn’t stay too long as guests were arriving that day but with what pictures I managed to get, you can immediately see the big difference in decor, style, comfort and cleanliness. THIS is what you expect from a silver-grade caravan! It feels homely with all the pictures, lovely curtains that have curtain rails that are not rusted, proper chairs at the table and most importantly, clean!
Cleanliness
Dishes, cups, cutlery etc felt greasy. We had to wash everything before using them. The beds were so uncomfortable and I was in so much pain, we decided to try the pull-out double bed in the lounge. This was dirty with crumbs/food still on the mattress. Worse still, when we lifted the sofa cushion to get to the pull-out bed, we found a piece of wood with two large nails sticking out of it (pictured above).
As well as kids, this was a pet-friendly caravan, can you imagine if a little tot or dog found that? Doesn’t bear thinking about it!!
Pull-out Bed MattressWould You Sleep On This?
With Covid still present, (actually, at any and all times) the least you expect from a “professional company” is to be able to stay in a clean caravan!! It was clearly obvious the bare minimum of cleaning (if any) had been done!
Complaint
I suffer from Anxiety and IBS, I really didn’t want to have to complain as I knew this would set off my anxiety which would then cause a massive flare-up of my IBS, leaving me stuck in the caravan for the rest of my holiday. Unfortunately, things got so bad that I had to complain in the end!
Very briefly, the manager claimed the wood with two large nails fell off the surrounding wood of the pull-out bed – But when maintenance came out, he couldn’t find anywhere it may have come from.
When I complained about the lack of entertainment – His response was the pool is open. I asked him, “how was that any good to me”? He responded, “but the pool is open”. When asked if they had a pool hoist, he bluntly replied no! He then went on to say he could open the show bar but I would be the only one in there!
I explained how we were told over the phone the show bar would only be opened at weekends but there is entertainment every night in the Magpie & Stump. He said no, I shouldn’t have been told that. Well, mister, that is exactly what we were told, which is why we continued to book at your park.
When complaints have been made regarding the closure of the chippy/shop, Palins are very quick to inform customers who complain (especially about the quality/opening times of the chippy, shop & pub/restaurant) that they are franchised out so NOT the responsibility of Palins. Palins seem to not take responsibility for anything. That is their blanket attitude…..They absolve themselves from any wrongdoing! Frankly, I have no idea how they are still operating.
Social Media
I am completely gutted I didn’t read Tripadvisor comments or their Facebook page reviews. They very accurately describe just how bad this holiday park really is and the terrible way it’s run. It has many complaints spanning over 5 years about cleanliness, and how the park looks manky and run down. No entertainment, the list is endless really. Yeah, of course, you expect a few complaints. I mean, you can’t please everyone all of the time. But….These complaints include H&S issues as well as taking customers for mugs!
Expectation
When booking a holiday, you have a level of expectation of how that holiday will be and this is normally due to previous similar holiday experiences and/or the company’s website (if booking directly) or a brochure from a holiday agent, right? I mean, you don’t expect to have to wear formal evening attire in a holiday park where you would expect to dress this way on a formal night when cruising. You probably would expect a high standard of food and waiter service on a cruise but again not when holidaying at a holiday park, you expect that to be a much more casual affair.
You get my point, so as we’re no strangers to holiday parks or staying in caravans, we were under no illusion as to what to expect. Or so we thought! Holiday parks are well known for their family entertainment, so when you stay at a park that claims to have entertainment every night but you receive none at all, you are wondering what the hell went wrong! When that same park has a food outlet and a shop, you expect to be able to use them.
What you don’t expect, is to holiday at a holiday park that closes all amenities but one (the pub) and be made feel you are staying at a holiday park that is closed for the season!!
Legal
We contacted our credit card company to put in a Section 75 claim: “Section 75 is an important UK consumer protection law made in the 1970s that means your credit provider must take the same responsibility as the retailer if things go wrong with a purchase. Yet it doesn’t work on all purchases – just those costing a certain amount”: Source: Money Saving Expert – Section 75
We are hoping to get our money back under the claim of “Misrepresentation and Breach of Contract”. We hope we don’t have to go to the Small Claims Court by taking this route first. (“The small claims court is the low-hassle way to take legal action for up to £10,000 against a firm or individual in the UK. But be confident you’ve got a case before you start as new fees mean you’ll now pay twice as much if you lose”). Source: Money Saving Expert – Small Claims Court
WE WON!!! We have been given a full refund of what we paid to Palins Holiday Park. That has lifted such a weight off my mind. I can finally put this fight to bed now. I do wonder though, does the company get told that section 75 has been taken and do they get informed of the result? Would be interesting to know if anyone can answer that for me.
Disclaimer
All images are original and untouched. Two images have been placed side by side so you can see the lounge as a whole.
Disabled People Excluded From Medical Treatment! – You would think hospitals would be the best equipped for disabled people, considering how many patients arrive in wheelchairs and/or walking sticks. Sadly, this is not the case!
As a disabled person myself and my recent breast cancer journey, I have had quite a few dealings with the medical profession. Different hospitals, departments, and staff, doctors, nurses and oncologists. I am dumbstruck as to how excluding the health profession (as a whole) can be. This exclusion causes many disabled people from receiving the treatment they need. This can and does turn into life-threatening situations and yes, even death! This is my experience!
Before I go any further, this post is not directed at any one person, department or hospital. It’s a general overview of the medical profession’s infrustructure, highliting why so many disabled people can’t get the treatment they need. Right now, so many health professionals are putting their lives on the line for all of us. I’m so grateful for the treatment I have/am receiving.
My Experience
Considering the number of patients that a hospital treats, you’d think they would be better prepared for all walks of life. I’ve been in and out of hospital all my life and in this time, I have seen some positive changes, especially with attitudes but unfortunately, a lot of improvement is still needed.
Infrastructure is probably THE biggest issue, it definitely leaves a lot to be desired. Beds too high and not height adjustable and if they are height adjustable they still don’t go low enough. Disabled toilets that are not fit for purpose. Clinic rooms are too small to allow wheelchair users and their companions. The list goes on and on.
My experience as a patient in the medical profession spans over 50+ years. During this time I’ve had over 30 operations just related to my disability. I have been poked, prodded, a guinea pig gawked at, told if I bathed in Lourdes baths I would be able to walk without my caliper’s and even forced into a pair of new style calliper’s with the promise of being able to revert to my old ones if I didn’t like them. (A lie). My favourite, however, is being told ALL my problems would be solved if I lost weight! (I was seeing a so-called professor at the time regarding my vertigo).
Hospital Equipment
Equipment is probably the biggest reason disabled people can’t get the treatment they need. Take my radiotherapy treatment for my breast cancer. There was a lot of concern as to whether or not I would be able to get/off the radiotherapy bed. A “trial run” was arranged where I was taken to their CT scanner, (where they take patient measurements before treatment starts). I was able to transfer (with the help of hubby) on and off the bed. I was also able to keep my arms above my head using the stirrups attached to the bed.
So you can imagine my shock when in my first session of radiotherapy, I was unable to get up onto the bed. It was only then I was told the CT scanner bed can be lowered more than the radiotherapy bed! The point of the trial run then? Thankfully they had a hoist that I used. But what if they didn’t have one? I would not have been able to have radiotherapy.
Many patients have had treatment cancelled because of this very reason. CT beds or MRI beds being too high, a hoist is not available! How many patients have died because they can’t be examined or get the correct diagnosis or treatment? I have no idea what would have happened to me if I had been unable to get on/off the radiotherapy bed! What good are medical advancements if not EVERYONE can access them?
Disabled Toilets
Now we all know how terrible some disabled toilets are being not fit for purpose! A hospital of all places (where wheelchair users, patients on crutches etc are being treated) you’d expect to be the one place you’d not have a problem, right? Wrong! I have used so many different toilets in so many different hospitals and you would be shocked at how few of them I was able to use.
One’s where I’ve wheeled in facing the toilet and then can’t even close the door no matter how close I’ve got to the toilet, let alone transfer!
The sign says “Less Abled WC”
Patient Notes
The medical profession should have a system in place where patients’ needs are noted. I’m partially deaf, a fulltime-wheelchair user with IBS among many other ailments. None of this information is noted in my medical file.
If this information was readily available, this would make appointments run far more smoothly and quickly. I would not have to repeat myself at every appointment I have regarding my already existing medical conditions. As a disabled person, it takes all my energy to get ready and travel to my appointment. To then have to use what energy I have left to reel out my entire medical history, family medical history and any/all medications I am taking BEFORE even discussing why I am in front of you is exhausting, to say the least!
Having this information would also aid in having the right equipment available if a transfer is needed for an examination or treatment. Like at my radiotherapy treatment. The hoist (thankfully) belonged to that department so fetching it didn’t take too long. Once it was recognised I needed the hoist, it was always waiting for me at whatever machine I was on for that day. This proves having important information regarding a patient’s mobility/disability is extremely beneficial!
Mammograms, every time I go for my appointment (at the same place), their first words to me are “Oh sorry, we don’t have the facility to do wheelchair users”. I then have to explain (in detail) how I can remove my armrest and physically sit in a position to enable my mammogram to go ahead. There have been many times I have had to explain I have done this in the past on their machine at their hospital.
Hospital Letters To GPs
How many times have you received a copy of a letter to your GP from the hospital after your treatment and found it to be a fairytale rather than non-fiction? I am shocked at how many times my disability has been wrongly described, or how my disability/conditions affect me. It goes to show just how little the Dr/Surgeon/consultants etc actually listen to the patient.
This is most distressing when it is done to your face in the respect that you are made feel your concerns, illness etc are all in your head! After my heart attack, I suffered excruciatingly from vertigo. On a daily basis, I felt nauseous and dizzy. I couldn’t see properly, focus on the TV or read. Constantly felt like I was going to fall out of my chair or the bed at night. It affected me so badly that I didn’t even want to get out of bed each day. I became rather depressed over it all. Eventually, after a long battle with my local ENT clinic, I was given an appointment with a vertigo professor.
What a complete twat he was! He wanted my whole life history, I mean EVERYTHING! Only then to tell me if I lost half my weight, all my problems would be solved! I swear I am not exaggerating one bit. This dumbfounded me, something that very rarely happens to me. I left in tears! Here I was, not wanting to get up each day, unable to do basic functions, drive or communicate effectively with family & friends and he told me the solution was to lose weight?? AND HE WAS A PROFESSOR!!!!!!
Your Attitude Stinks
Over the years, attitudes (believe it or not) have somewhat improved. There is still so much more improvement needed but I think it’s heading in the right direction, just not quickly enough.
My daughter had to go for an ultrasound scan as a young teenager. She wanted me to go in with her as it was more of a female issue. When the nurse came out to call her in, I moved to go in with my daughter and the nurse just sharply said “There’s no room for that thing”. I asked her “what thing” and she pointed at my wheelchair. This was in the waiting area in front of other patients, I was mortified! I was made to feel like a failure as a parent. I wasn’t able to be there for my daughter when she needed me. Who on earth has the right to make anyone feel this way? Especially when it turned out to be unnecessary?
Her Dad went in with our daughter (yes, she was asked would she prefer to make another appt or have her Dad go in with her). After the appointment, hubby explained there was ample room for me to have been able to go in with our daughter. I was furious that our daughter couldn’t have her Mum in with her for no reason whatsoever! I made a formal complaint, for all the good that done!
After this rotten incident, I was extremely nervous going to any and all appointments for the fear of the same treatment. Thankfully, they are far and few between but it only takes one!
Who’s The Expert?
I have lived with my disability/illness for 52 years. How long have you studied my disability specifically? When I tell you something is wrong, DON’T brush it off! Don’t tell me it’s all in my head, or caused by my anxiety, stress, weight etc, etc, etc. Bloody well investigate further! I live with my conditions on a daily basis, I know my body and how it works/reacts. So when something is wrong I am not looking for attention, or wasting your time.
If I gather enough energy to get to a GP appointment about something, I have already waited on it for weeks, if not months or years. Telling me to keep an eye on it and book in again if it’s not better is counterproductive as mostly I now have to recover from the energy that has already been spent. I am my own expert when it comes to my body/condition. Respect my experience, listen to me and be willing to learn from me.
If I say my disability is acting up or a cannula isn’t working, I’m almost always proven right. Do you listen? No! I then have to face the consequences of your ignorance. Like the time I had to have an echocardiogram with dye. I told you the cannula was not in my vein but you insisted it was, my arm started to swell as you injected the dye. So which one of us was right?
Calipers
I have always worn calipers to walk, up until roughly 18 years ago when I was diagnosed with scoliosis. As a child, my calipers were supplied and repaired by a company hired through my school. He was lovely every time I needed to see him, friendly & helpful. Then he got an apprentice! That’s when everything turned to shit for me.
This apprentice decided he knew better than everyone else! He had invented a new style pair of calipers made out of nothing but thick plastic and guess who was the guinea pig? They not only looked ugly but were extremely uncomfortable to wear. I got blisters, and sores that bled. They were the biggest heap of crap I had ever worn.
He tried selling the idea to me chatting about how I could wear “normal shoes” with them and if I really didn’t like them after a trial run, I would be able to go back to my original pair. (You know, the ones I had NO problem with WHATSOEVER!!). After the trial run, I went back to him and told him I hated them, how they hurt me and wanted to go back to my old pair. He said this could no longer happen as my old pair had been destroyed! I was mortified!
Many years later as an adult, I was now under Hammersmith hospital’s surgical appliance department. (you know where I’m going don’t you?). Guess who was there? Yep, the idiot who lied to me. I told him in no certain terms would he be putting me back into those horrible plastic things. Needless to say, he remembered me and nearly shit himself and of course, totally agreed with me.
Waiting
Have you noticed how 90% of all waiting areas do not cater for wheelchair users? With over 1.2 million wheelchair users in the U.K, you’d think there would be a couple of places for us to wait.
Waiting areas are normally very small and cramped with no room for wheelchairs, electric or otherwise. Hospitals use internal wheelchairs to transport patients from one department to another. On top of other patients who use wheelchairs. Hospitals should be aware of the number of wheelchair users that would require space to wait their turn also. Yet sadly this is not normally the case.
Backtracking to patient notes, since my heart attack, I suffer from anxiety. As an IBS sufferer, waiting is a big issue for me as waiting for an appointment causes me a lot of anxiety. My anxiety causes my IBS to flare up. I can and have started worrying the night before, so by the time I turn up for my appointment I’m already a wreck. It would be really helpful if staff knew this so that if I’m rushing back and forth to the toilet and not in the waiting area when called, at least they may understand why. Of course, the ideal solution is to not have to wait too long.
Then there’s the “Oh, didn’t realise you were in a wheelchair, can you get out of it at all, not sure there’s enough room for it”? A lot of appointments are taken up with this sort of conversation and then them running around looking for an alternative room. This only prolongs the waiting time, which then makes my anxiety worse as now I feel a burden, then my IBS gets worse so needing the toilet again!
Conclusion
The health profession as a whole still needs massive improvements. Some improvements have already happened and seem to be moving in the right direction but it’s just not improving quickly enough. Advancements are also happening but these are no good to people who can’t access them due to failed accessibility!
Having short notice that I would be attending Comic-Con in Telford, you can imagine all the local hotels were booked solid. Having to look further afield, we settled on the Spread Eagle Inn in Gailey. Approx 20 mins from Telford city centre. We managed to book one of their accessible rooms. This is my honest review of our stay.
Spread Eagle Inn
As a full-time wheelchair user, I have to have a wheelchair accessible room when travelling. If I am unable to book an accessible room, then I simply can’t travel! Accessible rooms are far and few between so you have to book them very quickly. When we have taken a cruise holiday, we have to book almost 2 years in advance or you have no hope of booking one.
As you can imagine, ALL local hotels were fully booked so we had to look further out for an accessible room. We chose Spread Eagle (part of the Marston’s group) as we have stayed there once before. Although, I wish we hadn’t (more on that in a bit).
Spread Eagle has 4-5 disabled parking bays and a ramp-up to the main doors of the restaurant/reception. You book in at the desk by the side of the bar. To go to your room, you can travel down the ramp inside the restaurant and make your way to the side entrance where you walk/wheel over to the hotel building.
The hotel building has an automatic door entry that is operated by your room key card. You hold the card to the box at the side and the doors open. You do the same for the next door inside that leads to all the rooms. This door is very heavy, presumably a fire door. My accessible room was about two rooms on my left after entering. Again, the room door is operated by holding the card next to the electronic fob box. Your room door is also very heavy.
Accessible Room
There’s literally nothing in the room apart from a bed, a small desk in the corner with a mirror above. There is a TV on the wall opposite the bed. You have what is meant to be hanging space beside the bed, again in the corner. The hangers are fixed in place. You have to unhook the pin from the part of the hanger that slides on the rail. From a wheelchair user’s perspective, I feel it is unusable. The hangers are very high and very fiddly to use. My suggestion is to bring your own hangers. If you are able to reach up to high places, you may be able to use it. There are a couple of shelves below but really not enough for two people if staying more than a night or two.
There is a tea/coffee facility available in the room by the means of a kettle and sachets. Only full-fat milk is provided in the room though. You can ask at the bar for semi-skimmed milk which they can provide. You only get provided with two tea bags. We had a cup of tea before going to bed on the day we arrived but didn’t get a refill of tea bags the following day. Not a problem, we just went back to the restaurant and got some from the tea machine. They supply sugar/sweeteners and a couple of wrapped biscuits.
I mentioned a TV on the wall. The remote control for the TV is sat on a little ledge directly under the TV. Due to my dexterity, I found this very high and very very difficult to grab hold of due to not being able to get my hand in under the TV to get a grip of the remote.
The Bed
I’ve slept in many different hotel beds (even a broken one) and I have to say this was probably the worst by far! The bed was so hard that it caused pain in both of my hips and back. The severe pain I was in from the bed, made my weekend more difficult than needed. My husband had to do all the driving, transferring in/out of my chair was painful. I took my own specially designed pillow last time but stupidly forgot to bring it home. I rang the hotel explaining the situation and asked if I paid for the postage, could they post it out to me. They refused, saying they didn’t have the means to post stuff out!
With this in mind, I left my new one at home but found their pillows to be too soft and flat. They slid up the wooden headboard throughout the night which caused me neck pain too. So all in all not a great night’s sleep!
There is an emergency alarm on the right-hand side of the bed by the lamp.
If you request a double accessible, don’t expect a double bed. You are given two singles pushed and locked together! This (in my opinion) is why the mattresses are harder and you also have to deal with the rope-like rim that goes around the edge of each mattress making it double trouble down the centre of the bed.
No Subtitles
The TV’s remote was kept on a ledge underneath the TV, I found it very difficult to reach and grab the remote. Every day the cleaners would put it back. I found it impossible to switch on subtitles as I couldn’t find this facility anywhere in the TV’s settings. Being partially deaf, this meant if I wanted to watch TV I had to sit underneath it to hear it or turn it up loud and run the risk of annoying other guests. Yes, I could have asked staff for help but I didn’t want to bother them, so just left it.
Accessible Wet Room
It’s a fairly functional wet room, shower, toilet, shower seat, sink, grab rails and two red alarm cords. Although the one at the entrance is far too close to the light cord so could be pulled by mistake. That’s it though! No extra bins, the small bin provided was a pedal bin? My pet hate, the sink was too near the toilet and I almost fell twice while transferring. (I know the sink has to be close but this was almost over the toilet itself). There was no shelf provided so nowhere to put a wash bag, brush or anything at all.
The toilet roll was so thin and cheap feeling I’m glad I take my own. On the plus side, the toilet chain was on the right side of the toilet and there is a mirror over the sink, for what use that would be without a shelf. Plenty of space to swing your chair in a full circle.
Restaurant
There are two entrances to access the main building where the restaurant is. Both are ramped. The restaurant is not always a table service. It has one unisex disabled toilet.
Breakfast – Either continental, which is buffet style or cooked breakfast which is ordered at your table. Be careful though, it is not obvious that they have two types of cooked breakfasts. You have the Classic & The Works. Hubby ordered a full English not knowing there were two kinds. Classic gives you one of each item of food but the Works gives you two of each item. He was given the second and charged accordingly.
Evening Meal – You decide what you’re having from the menu, find your table number and go to the bar to order your food. There is no table service so if you want something else or more drinks, you need to visit the bar. You also have a carvery (buffet style) but both I and my daughter found this to be rather poor quality and cold.
We were told a new menu was in place since our last visit. Hmmm, not much choice outside of steak & burgers and what we did have was not very tasty and cold like it had been made at the same time as our starters and left to sit!
Staff
The staff as a whole are friendly and very helpful. On our first visit last November we found what seemed to be mould on our bedsheets & pillows. We went to reception and within minutes the manager came to change our bedding. (This was approx 11 pm).
On our second day of this visit, I asked the room maids if it was at all possible to have a quilt put under our sheet as the mattresses were causing me pain. She said this would not be a problem as she has had many requests for this before. Why don’t the hotel do something about their mattresses then? It helped but because I was already in so much pain, unfortunately, it wasn’t perfect.
Worth The Stay
If you need somewhere overnight, then it’s probably one of the better places to stay. The price of a room is reasonable, the food price is average but the quality could be better. Rooms are very clean if somewhat minimalistic.
The big question is, would I stay here again? If I could find somewhere else, I would not stay here again. Unfortunately, we go to Telford for one reason, Comic-Con. So unless we could book an accessible room early enough before they are all sold out, then we probably wouldn’t have a choice in the matter and I would stay here begrudgingly!
Deals & Offers
At the time of writing this review, Spread Eagle have a 20% off main meals if you book directly with them. Full terms & Conditions.
IBS and Anxiety are two very debilitating illnesses, both keep me from doing what I want when I want. The pain can be unbearable when I have an IBS flare-up and my stomach feels as though it is going to explode. Other days, it can be a case of having to run to the toilet every 5 minutes.
Bloating, abdominal pain, cramping, gas, diarrhoea, constipation (or both)…any or all of these symptoms can be associated with Irritable Bowel Syndrome or IBS for short. I explain how this and anxiety affect me on a daily basis and why this makes my depression worse.
What is Irritable Bowel Syndrome (IBS)?
Irritable bowel syndrome (IBS) is one of the most common gastrointestinal disorders, with up to 20% of the population suffering from it at some point in their life. The typical symptoms of IBS include either recurring diarrhoea or recurring constipation. Some patients also suffer from both diarrhoea and constipation at different times. Additional symptoms can include stomach pain (which is sometimes relieved by a bowel movement), bloating, nausea, and wind. IBS can wax and wane, and patients may experience a few weeks or even a few months of good health before the symptoms return.
IBS is not a psychological disorder but has come to be closely linked with both stress and anxiety. Even people who do not experience IBS can find themselves needing to go to the toilet when they are experiencing stress or anxiety.
There is no specific medical test for IBS and it is sometimes called a diagnosis of “exclusion”. This means that a doctor may rule out other bowel and stomach complaints such as coeliac disease or inflammatory bowel disease before giving a diagnosis of IBS. It is very important that patients do not try to self-diagnose IBS as it is impossible for a patient to tell the difference between IBS symptoms and bowel symptoms caused by other disorders. (Source: anxietyuk).
What is Anxiety?
Anxiety is the feeling you have when you think that something unpleasant is going to happen in the future. Other words such as feeling ‘apprehensive’, ‘uncertain’, ‘nervous’ and ‘on edge’ also provide a good description of feelings linked to anxiety. (Source: Country Living).
Symptoms of anxiety – People often experience physical, psychological and behavioural symptoms when they feel anxious or stressed.
Some of the most common physical symptoms are:
Increased heart rate or increased muscle tension
‘Jelly legs’ or tingling in the hands and feet
Hyperventilation (breathing
Hyperventilation (breathing too heavily) or dizziness
Difficulty in breathing or a tight band across the chest
Wanting to use the toilet more often
Feeling sick
Tension headaches
Hot flushes or increased perspiration
Dry mouth
Shaking or palpitations
Choking sensations
Some of the most common psychological symptoms include feeling that:
You might lose control and/or go “mad”; or feeling that you might die
You might have a heart attack/be sick/faint/have a brain tumor
People are looking at you and noticing your anxiety
Things are speeding up/slowing down
You’re detached from your environment and the people in it
On a daily basis, I wake up and my first thought is how will my stomach behave today. I think about where I may have to go and if I do have to go out where are the disabled toilets. If it’s a stay-at-home day then I don’t really feel too anxious, I can have pretty much what I want for breakfast. On these days, I try my best to not have to go out unexpectedly.
On days I do have to go out, I will eat minimally for breakfast (if anything at all). If I don’t eat breakfast this plays havoc with my sugar levels but is the lesser of the two evils (in my mind). I will only have one cup of tea, and all being well I will be going somewhere familiar to me, so I already know where the disabled toilets are. But even on a good day, it will always be with me..”Will my stomach turn”? It is a constant fear I now live with!
If it’s somewhere not familiar to me, this will have set off my anxiety the night before, sometimes days before so I can wake up feeling pretty rough, which can also set off my IBS. I will have already done research on where disabled toilets are. If there are none, this is a major trigger and I spend the whole time constantly thinking of all the things that could go wrong. Which again, only makes matters worse.
Frustration
The frustrating part of all of this is there is no logical explanation for my anxiety. If I have to go out and I know there are disabled toilets in the area, why do I get anxious? I have no answer to this which only adds to my frustration. When I’m frustrated I get worked up, this makes me anxious. When I get anxious my IBS flares up I feel I can never win! It really is a vicious circle!
Believe me, I have tried so hard to work out the root of my anxiety. I am so desperately want to alleviate my anxiety, IBS, stress and all that jazz so I can go out and do the things I would love to do by myself. at present, I am terrified of going out alone, so my husband comes with me most of the time.
My husband comes out with me, as quite a few disabled toilets are not equipped for electric wheelchairs as these are normally larger than manual wheelchairs, so if my IBS kicks off and I need to rush to the toilet, my husband needs to help me with transferring from my chair. Another reason, what if I get caught short while driving? If my husband is with me I can pull over and let him continue the driving.
I’ve tried group CBT, hat a flop that was. Our “therapist” showed up as and when she felt like it and never finished the course. I had 3 weeks in total!! The conclusion I have come to is that this really started after my heart attack 5 years ago. I’ve been told a major life trauma can cause anxiety for the foreseeable future which I suppose when you look at the big picture it makes sense.
A Bad Day
When I’m having a bad day, (for whatever reason), I can wake up feeling nauseated my stomach will be gurgling and food just does not interest me. I will try some breakfast and on a really bad day, I can be rushing to the toilet before I’ve even got halfway through it. The rest of my breakfast is then chucked away. I will try and stomach a cup of tea but again this can have me rushing to the toilet.
Throughout the day, I can feel like I want to throw up, I get all hot and sweaty, palpitations and I can get very light-headed (due to lack of food). There are days I can rush to the toilet 4 to 5 times within a half hour time-frame. This will repeat throughout the day. By the end of the day, I’m exhausted! Not something you want to be doing on a day out!
Triggers
Triggers are what set off an episode of anxiety or IBS flare-up. My biggest trigger is stress! I don’t always know when I’m stressed out, but my body has a great knack for letting me know. Something might happen during the day that I don’t feel is something overly concerning but my body can tell me otherwise.
Food can be a big trigger, certain foods can be a little too spicy which can set my IBS off, some days if I haven’t eaten very much but then have a slightly bigger evening meal, that can set me off. There have been times in the past when I’ve met a friend for lunch, I will have no breakfast as I know we will be having lunch and after a few mouthfuls, I can feel my stomach churning.
This is where the cold sweats and anxiety get to an all-time high, you worry if you have time to make it to the toilet, will you have an accident on the way, how will your friend feel you having to rush off again, will the one and only disabled toilet be in use? It truly never ends.
Flatulance
Farting, a lot of people find this humorous but I can assure you it most certainly is not for someone who suffers from IBS! The pain, the rumbling and grumbling of your stomach, the embarrassment when out and about as flatulence can suddenly come upon you out of nowhere. oh, let’s not forget the most important bit, the bloody smell!
I’m sure we have all been in the situation where you have been in a shop, supermarket etc and you’ve had to let off some wind, normally we can disguise this pretty well but, IBS can cause your wind to be extremely smelly. Just imagine you’re having a lovely lunch with a friend in a cafe, suddenly your stomach growls at you and you know the only way to alleviate the oncoming pain is to let off some wind. Panic sets in, will it smell? Will it be loud? What if it isn’t just wind? All of this while still smiling as if nothing is wrong.
Depression
When you have to keep cutting short meetings with friends to rush home because another bout of IBS has made you feel ill, or you simply refuse to go out at all, (which I have done both, many times in the past), or you no longer go out for meals with family/friends because you feel a burden having to leave the table mid-meal to rush off to the toilet. Is it any wonder you start to feel depressed, fed up and isolated?
When I have a really bad week, I simply resign myself to staying indoors and deal with the pain by myself. If I have a medical appointment, I try to re-arrange it where I can.
Recently, I had an opticians appointment. I had no indication I was going to have any issues with IBS so I went to it. After approx 5 minutes into my appointment, I had to rush off to the toilet. The branch didn’t have a disabled toilet, so I had to go out into the high street. At the first coffee shop, their disabled toilet was out of order, this only added to my anxiety. I rushed out of there and went to a second coffee shop. Thankfully I was only just able to use that disabled toilet.
Irony
The irony is, I went down to a set of traffic lights to cross over to go to the first coffee shop. This was where the toilet was out of order. The coffee shop where I was able to use a disabled toilet was back on the other side of the road. This was two doors away from the opticians.
It just goes to show, when you’re in a state of panic and anxiety you really don’t think straight or logically!
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Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination? – Accessible holidays are already far and few between, it’s hard enough to find hotels that are “fully” accessible. Yet, this is made even harder if you have a family. Hotels, for whatever reason, do not offer “family” accessible rooms, yet provide family rooms for able-bodied families. By not offering these room types, disabled people with families are forced to book extra rooms.
The Equality Act 2010 suggests this is direct discrimination. So I’ve contacted 10 of the most popular hotel chains to find out why this is the case. My findings are below.
Family Rooms
As a full-time wheelchair user myself, when booking a room I need a fully accessible room. However, I also have a daughter who travels with us. Finding an accessible room is difficult enough, especially when holiday companies claim to be “fully wheelchair accessible” and then you look at their pictures (when supplied) and find they tell a whole other story. Or worse, you turn up and only find out then. Yes, both have happened to me.
At present, it seems hotels do not offer any “family” accessible rooms for disabled people. Yet they do supply family rooms for able-bodied customers. This is direct discrimination!
I recently visited family in Wales (I’m in London). We booked a room with Premier Inn. As they are one of the hotels that do not offer accessible family rooms, our daughter could not stay in our room. Luckily, we had family members who were visiting with us, therefore, we were able to book a family room for them and have our daughter in with them. This begs, the question, what if my other family members were not travelling with us? What/where would my daughter go?
When you are disabled and have a family, being forced to book an extra room for your children is not only a parent’s worse nightmare but this can make a family hotel room “double” in price. With new Government rules/regulations around school term holidays, can you imagine how much this would cost at peak times? A hotel stay (1 room) can jump from approx £600 to £1200 for a few days stay. I wonder what non-disabled customers would say about this if they had to pay for two rooms as family rooms were not offered? I’m sure they too would have something to say about it!
I contacted the above hotels all on the same date (10/7/21) asking if they do in fact offer accessible family rooms,
My email:
Dear Sir/Madam,
I am contacting you today to enquire about family wheelchair accessible rooms. As a full-time wheelchair user, I find accessible rooms are far and few between as it is but accessible “Family” rooms seem to be non-existent! Why is this?
When booking a hotel room, I am unable to find any accessible family rooms. This means I am forced to book a second room just for my daughter. This then makes my hotel bill double in price. This is not the same for able-bodied customers as hotels seem to offer plenty of “family” rooms that are not classed as “accessible!
This puts disabled people with families at a major disadvantage compared to able-bodied families, both financially and physically.
I am writing to enquire if any of your hotels offer wheelchair-accessible family rooms. If not, do you have any alternatives in place, like offering a second room at a reduced rate or even for free? Do you have other alternatives are in place if not, how do you let your disabled customers know this? If you do not offer wheelchair-accessible family rooms or any alternatives, what is the reason for this?
I look forward to your reply.
Hotel Responses:
Premier Inn – I found Premier Inn to be the most helpful and most willing to help, they say: “We are able to add additional beds into our accessible rooms to make them into family rooms upon guests request. Where this isn’t possible and we aren’t able to accommodate guests in one room we will offer a second room for free and will always try to make this an interconnecting room to the accessible room.”
Since receiving their reply, I have booked a room where they have said an extra bed will be put in their accessible room at the hotel I am staying at. So fingers crossed, all will go well. So far, they have done what they say they would.
Travelodge –
“Thank you for contacting Travelodge.
At Travelodge we take our commitment to equality of access very seriously.
We do give great consideration to the accessibility of our hotels and make every effort to make reasonable and practical adjustments to support the varying needs of our customers.
Having adopted and complied with well recognised national standards we consider that we are meeting our obligations to disabled customers under the Equality Act 2010.
Whilst facilities offered across our locations do vary due to the age and type of construction every consideration is given to accessibility and should you ever want details of the provision at a specific hotel this can be obtained from the hotel itself. For example accessible rooms in our newer properties are equipped with walk in wet room showers.
The Bed base from the ground is 25cm Bed base and the mattress together is 49cm The Bed fully made is around 52cm
I hope this helps”.
Best Western – No response!
Ibis Budget/Styles – “Thank you for reaching All Accor Live Limitless Customer Care support. First, I truly apologize for the inconvenience. I am coming back to you following your request regarding wheelchair-accessible family rooms. I am not able to reply directly, so I have allowed myself to forward your email to the ibis Fes hotel which will take care of your demand. They will return to you as soon as possible“. I’m still waiting
Novotel – No response!
Holiday Inn – No response!
Britannia Hotels –
I contacted the hotel directly in wales as I was looking to book here for a few days, (until I read the reviews). This was their reply:
“Thank you for your message. The Grand Hotel in Llandudno has 2 accessible rooms which have 2 single beds in each room. These rooms have walk in showers with a small step into the cubicle. Unfortunately, we do not have any rooms that have a wet room. If you would like to book please contact Reservations on 0161 923 0300 and then will be able to give you rates and check availability.
Kind regards“
So this is what they call accessible: These rooms have walk in showers with a small step into the cubicle. Not wheelchair accessible then!! Glad I wasn’t staying here.
Marriott –
They responded with a brush off but at least they responded I suppose:
“Thank you for contacting Marriott Bonvoy™ Customer Care. It is my pleasure to assist you today. Please accept my apologies for any inconvenience caused and I can certainly understand your frustration. Please call our reservation line toll free, 24 hours a day at 1-888-236-2427. One of our dedicated associates will be happy to help you with your upcoming travel”.
Hilton Doubletree – No response!
Ramada – “Thank you! We’ve received your message. We will respond within 24 – 72 hours. We are currently experiencing a higher than normal volume, your patience is greatly appreciated.”
I’m still waiting!!
Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?
According to the Equality Act 2010, they say this:
Direct discrimination occurs where, because of disability, a person receives worse treatment than someone who does not have a disability. This provision is intended to stop people being denied a service, or receiving a worse service, because of prejudice”.
“What is discrimination arising from disability? (new)
Discrimination arising from disability occurs when a disabled person is treated unfavourably because of something connected with their disability and the unfavourable treatment cannot be justified. Discrimination arising from disability is different from direct discrimination. Direct discrimination occurs when a service provider treats someone less favourably because of the disability itself. In the case of discrimination arising from disability, the question is whether the disabled person has in practice been treated unfavourably because of something connected with their disability”.
So, the question is, are disabled people receiving worse treatment than non-disabled people if hotels are not offering accessible family rooms? If the hotel offers no alternative for a disabled family and they have to book an extra room because of this treatment, then I believe the answer is most definitely has to be a yes! But, if an alternative solution is offered, then direct discrimination has not taken place.
Are disabled families treated unfavourably because of something connected with their disability? I believe yes! Why? Because as a non-disabled person, you have multiple options available when booking a hotel room, single, double, suite & family. Disabled people have one option, Accessible! So when travelling with your family, how do you cater for them if the hotel won’t offer anything more than a standard accessible room?
What reasonable adjustments do you have to make for disabled people? (changed)
Service providers are required to make changes, where needed, to improve service for disabled customers or potential customers. There is a legal requirement to make reasonable changes to the way things are done (such as changing a policy), to the built environment (such as making changes to the structure of a building to improve access) and to provide auxiliary aids and services (such as providing information in an accessible format, an induction loop for customers with hearing aids, special computer software or additional staff support when using a service).
When a hotel refuses to offer an alternative solution, they are in breach of the Equality Act 2010! Simple as that!
Further help
The Equality and Human Rights Commission is the statutory body established to help eliminate discrimination and reduce inequality. It will issue a statutory Code of Practice explaining in more detail the law in relation to service provision and discrimination. It also produces a range of material providing practical guidance on how to comply with the law. www.equalityhumanrights.com 0845 604 6610.
***UPDATE*** Up & Coming Campaign
We (a few disabled people at present) are looking into starting a campaign to get the hospitality industry (particularly hotels/B&B’s etc.) to:
Make “family accessible” rooms available, don’t fob off with “we MAY be able to include an extra bed
If family-accessible rooms are not feasible, then offer 2nd room free
Give correct and factual information regarding accessible rooms – Include images, measurements of room, bed height and wet room
Train staff – Make staff training better, telling a wheelchair user another wheelchair user has used said accessible feature is not helpful or informative
If you liked my blog, feel free to leave a comment below. If you would like to work with me, or if there is anything you would like me to blog about, don’t hesitate to Contact Me.
So, You’re Accessible? – Many companies and retailers advertise as being “Accessible” but what does this actually mean? Does it tell me if you have any steps in and around your premises? No! Does it tell me how high your counters are? No! So the fact you are advertising yourself as “Accessible”, gives me and other disabled people NO information whatsoever! Not only that, but you are probably also in breach of the Equality Act 2010!
Claiming to be Accessible Doesn’t Mean You Are Accessible!
So, You’re Accessible? – As a company or retailer, advertising as being “accessible” and then giving no further information, means you are not being as inclusive as you would like to think! Just because I CAN enter your premises, does NOT make you an accessible company.
Your interpretation of accessibility will most probably be completely different to those of a disabled person! There are many things you need to have in place before you can warrant yourself the title of being an “Accessible” company.
I am a full-time wheelchair user and my accessibility needs would differ from those who say are deaf or blind, I can not climb steps but a deaf person would most likely manage them. My arms are very weak and I can’t raise them up past my midriff, therefore using card machines on a counter is extremely difficult but yet, again a deaf or blind person would most probably find it easier to use.
Disabled toilets, do you have a unisex one as well as male/female ones? Some disabled people have carers who are of the opposite sex. They would need to use a unisex toilet.
Changing rooms, the above would also apply. The amount of times my husband has been refused to come in a changing room with me is shocking, to say the least.
When shopping for new bras in a very well known high street chain. My husband couldn’t come in with me as it was a female changing room. When asked if there were any unisex changing room, I was told no. I asked where the disabled changing room was, it was in the female changing room section.
When I argued the point that he was my carer and I could not try on the bras without his help and the fact I shouldn’t be expected to have a complete stranger help me with such intimate form of help, especially when they are at fault for not providing a unisex changing room, my husband was eventually allowed in to help me.
The other side of the coin is companies that do have these amenities but then use them for other purposes. I’ve lost count of the number of times I have been to restaurants, clothing shops and found the changing room or disabled toilet being used as a storage room. Using these amenities outside of its intended purpose is again, NOT being inclusive. I STILL can’t use them!! So yes, having these features may make you accessible but you ARE NOT USABLE!!
So What Is Accessible?
When a disabled person wishes to visit your premises, we need to know quite a few things to allow our visit to be as hassle-free as possible. I don’t want to read/hear the words “Yes, we are accessible”, only to turn up and find that actually, you’re not accessible at all. We need to know things like the following (this is only a fraction of the information we may need):
Are you level throughout your premises?
Do you have any steps? If so, how many and how high (most electric wheelchair users can cope with one small step)
Do you have a unisex disabled toilet?
Are your changing rooms unisex? Do you have a disabled changing room?
Restaurants, how high are your tables, I need to know if my knees will go under the table as I am in quite a high wheelchair.
Do you supply large print menus?
Hearing loops?
Height of your customer counters?
Hotels, do you offer wet rooms?
How high is the sink in your wet room?
Does the shower/toilet have grab rails, if so, where are they and are they horizontal/vertical?
Do you have lifts?
Can you supply letters in braille?
Accessibility Fail
Primark’s wheelchair accessible till
When accessibility fails on a mega scale, it is very distressing, soul-destroying and extremely frustrating to say the very least. My husband booked a hotel for a surprise long weekend in Cornwall. He phoned the hotel first to check out its accessibility, they answered all his questions and assured him all would be fine.
We turned up at the hotel only to find a list of accessibility failures:
There was a flight of steps leading up to the entrance. No problem said the hotel, just use the trade entrance round the back!
Our room was upstairs, the lift was a very tight squeeze, if I had my electric chair I have now, I wouldn’t have got in!
A step down the middle of the hallway leading to our room, the step was over 5 inches high
My manual wheelchair would not fit through the bathroom door, again, not a problem said the hotel, we’ll remove the door for you!
The disabled bathroom was NOT a wet room, it had a bath with a glass door across it, I had to get my husband to help me shuffle across the floor from the bathroom door entrance to the toilet so I could use the damn thing!
No room on either side of the bed to park my wheelchair.
The patio doors leading to the garden area had a very high step.
When in the restaurant, hubby had to get my food at the buffet as the room was so small. Hubby would have to go see what was available, come back and tell me, then go back to fetch it!
Not How To Resolve Issues
When things do go wrong and you get a complaint, here is a prime example of how NOT to deal with it!
To add insult to injury, when we complained to the hotel manager, he was rude, and obnoxious and accused us of lying only to get a refund. I told him to check with the staff member who offered to take the bathroom door off for us. He still wasn’t having it.
I told him he could stick his refund, that was not what this was about. The hotel was advertised as being “wheelchair Accessible” when clearly it didn’t even come close.
How To Improve
Make sure you are actually accessible BEFORE advertising as so.
If you are unsure of the accessibility features you should have (some are business dependant), ask!! There are many of us only too happy to advise you on accessibility needs, Some do it as a business!!
Give disabled people more information. Have a section on your website explaining how you are accessible.
If something is out of order, like lifts, let us know!
Wheelchair-accessible changing room
It really isn’t that difficult to be Equality Act 2010 compliant!!
Online Christmas Shopping During A Pandemic As A Disabled Person – On the high street as a full-time wheelchair user, shopping is difficult at the best of times. Throw in Christmas and it is a whole new ball game. Being in a pandemic and lockdown leaves me no other choice but to buy online! Do I prefer this to doing my shopping on the high street? What did I find to be the best and worst parts of shopping online for Christmas gifts?
I hate high street shopping at any time of the year. People, access, stupidity all add stress to what should be a normal part of my life! If you are an able-bodied person reading this, how many times in one shopping trip have you NOT been able to gain access to a shop because of steps? How many times have you NOT been able to browse around a shop due to clothes rails being so tightly packed together they hit your shoulder causing severe pain? Gone to a counter to pay and been ignored because the counter is so high you are NOT seen? Exactly!! I can experience each of these EVERY TIME I go shopping.
Benefits of Shopping Online
There are many benefits to shopping online.
It’s stress-free.
You can visit many different websites at the touch of a button.
Browse 1000’s of products in a short space of time.
You are not worrying about the next person bumping into you or clambering over your wheelchair.
Queue jumping because “they didn’t see you there”!
Best of all, left out in the cold because you can’t get into the shop!!
Online shopping gives you the freedom to search for what you want at a time that is right for you. Websites don’t have “opening times” the same as physical shops do! So, if you want to shop for a pair of socks at 2 am, you can!
If like me and you use a PC, then another benefit is you can have several tabs open comparing the same item across different sites to check for delivery time/charges, price of the item and of course returns policy. Can you imagine doing that on the high street, even if you’re not a wheelchair user? I love the fact I can sit at my desk, a cup of tea beside me and settle down to browse gifts for family/friends in the warmth of my own home.
The Downside of Shopping Online
When shopping online, images of products are of course going to be great looking. After all, the company is trying to sell you their product. You only have to read my review of Tapi Carpets to see the issues you can have.
You can’t feel the item – Texture, material
Smell the item – Some fake leather products can smell really bad
Colour is not always the same when viewing on a monitor
Judge sizing when shopping for items such as clothing.
Solitary experience.
I have bought things that look great online but once received, the material is of lesser quality, or the item is smaller, or worse, turns up broken or faulty. I have bought a Christmas present that looked a good size and quality online but having received it, I know it’s going to be a big disappointment to the recipient! No doubt it will have to be returned. Sometimes you just want to see an item in the flesh.
I have done 90% of my Christmas shopping online this year. I’ve used brand company websites, eBay and Amazon. Companies I’ve not been familiar with and I have to say, I’ve only had two incidents. One, where an item arrived broken and another replaced by a lesser quality item than what was advertised. Both of which have been sorted fairly easily.
Security Measures in Place
Online Christmas Shopping During A Pandemic As A Disabled Person – Making sure you are aware of the pitfalls of shopping online is paramount! There are many ways things can go horribly wrong.
Identity theft.
Spam emails.
Fake websites.
Fake products.
Cloned bank card – To name a few.
However, research is everything! It is important to gather as much information as possible about the company you are shopping online with. Once you have done these checks a few times, it will become easier to spot a dodgy website/product.
Check websites address for HTTPS – If the company’s web address starts with HTTPS (especially on checkout pages), then you know your information is being sent over a secure network. – What is HTTPS?
Pay with Paypal where possible – If you pay by Paypal, the company you are purchasing from will NOT have any information regarding your card details. Only your name, address, email address and phone number if supplied. The beauty is, you don’t even need to have a Paypal account to do this.
Use a recommended website where possible – It’s always good practice to use website friends and family have used. You will know if they had a good or bad experience.
Check delivery and returns policy – Things can go wrong and for this reason, always check the returns policy and make sure you agree with the company’s terms. You don’t want to get caught out when things are too late.
Can you find the company address? – The Gov.uk website, says the following: Before an order is placed, you must provide: your business name, contact details and address, so it is helpful if you can find this as a lot of companies show pricing in GBP but originate and send products from another country.
Conclusion
If you do your research and check out the website the best you can, you should have a fairly pleasant experience. Yes, things will invariably go wrong, that’s life but you shouldn’t have too much of a problem getting the issue resolved. I will most definitely be doing my Christmas shopping online next year!
May I take this opportunity to wish you all very Merry Christmas and a Happy New Year! Please look after yourself and others. Here’s hoping next year will bring better things to all.
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