Disability

Life with a disability!

Bladder and bowel's just can't wait card for when you need to use the toilet urgently

How Just Can’t Wait Cards Assist Urgent Toilet Access

How Just Can’t-Wait Cards Assist Urgent Toilet Access – Needing the toilet urgently due to a medical condition is something that sets my anxiety sky-high when out and about. I suffer from IBS and to know that I could at a moment’s notice need the toilet urgently is the main reason I mostly stay at home!

Recently, I have seen some posts on social media where people have tried to use their “Just Can’t Wait Cards” and been told their cards look fake or have never heard of them. I hope this blog helps bring light to the fact these cards are not fake and are given out by reputable companies and health authorities.

What Is A Just Can’t Wait Card?

According to theibsnetwork.org

Our ‘Can’t-Wait’ card is available to help you gain access to toilet facilities when you need them most.  Simply present your card in public places or stores and ask if you can use their toilet.  The same size as a bank card, the ‘Can’t-Wait’ card can be hidden discreetly in your wallet or purse and can be produced quickly when you are needing access.

Whilst the card is not guaranteed to give you access to toilets, the cards are widely accepted and acknowledged.

theibsnetwork.org

For those of us who suffer from medical conditions that cause us to need a toilet urgently and unexpectedly. This could be a life changer as we all know how this can affect our anxiety and mental health. Having a just can’t wait card could aid us in accessing a toilet when we are in this situation.

How To Use The Just Can’t Wait Card

Just can't wait card from Bladder & Bowel UK

These cards are available as a download to your phone (normally free) or as a physical card the size of a credit card (normally a fee is attached). When the need arises, you simply produce your card at cafes, restaurants, entertainment venues and other businesses. Please remember, at present, these cards DO NOT guarantee you access to a toilet.

Where Can I Get One?

I have found the following places that offer a “Just Can’t Wait Card”:

Crohn’s & Colitis UK

Bladder & Bowel Community

Bladder & Bowel UK

The IBS Network

Age UK

Going On Holiday?

The IBS Network also produced an international TRAVEL card containing 12 translations of the ‘Can’t-Wait’ message, which can be used to find a loo in countries from Germany to Japan. Perfect for travelling or taking on your holiday! Be sure to pack yours this summer.

12 just can't wait in other languages.

They also sell Rady Keys:

Under the National Key Scheme (NKS), Radar keys have been produced for disabled individuals to gain access to locked public toilets across the country.

The keys are extremely useful for urgent access to toilet facilities and are a great source of independence. 

The lock will clearly display the initials RADAR National Key Scheme

These locked toilets are situated in a wide range of locations including train stations, shopping centers, pubs, cafes, and stores nationwide, and with a toilet finder app, make finding toilet facilities easy for when you need them most.

The IBS Network

Changing Places Map

Phone App or Website?

Both the website and apps allow you to search for your nearest facility or by town/postcode before you travel, but:- 

Use the website to find out the details and plan your route before you leave home. 

Use the phone apps to get there and then find their exact location.

1) The websites give more information and more options. They are specifically designed for when you are using a laptop or desktop computer.

2) The free Apple or Android phone apps work better when you are using your tablet or smartphone.

We have spent the last 4 years creating and checking the Changing Places/Space2Change guides, which are by far the most comprehensive and accurate ones available in the UK.

Changing Places Map

I hope this helps you in knowing these cards exist and hope this will help with bringing awareness to company owners.

If you would like to work with me don’t hesitate to Contact Me.  Feel free to leave a comment below.

Toxic behaviour can cause health risks but ignoring such behaviour is dangerous!

Toxic Behaviour By A Charity Trustee With No Board Intervention!

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

Blonde female sitting at a table with hands on her temples looking fed up

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
Male and female wheelchair users sitting around a table in a meeting

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

Men and women sitting round a table in a meeting with blindfolds on

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

Letter of complaint sat on a table

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.

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

Computer on a desk against a wall showing web design ideas

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.

Facebook comment with accusations
More Accusations

A couple of points first…

  1. 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.
  2. If I was holding the emails as hostage how come the charity was still able to receive emails? Again, no support from the board.
  3. 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
Facebook accusations towards Caroline part 2

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.

Toxic person meme

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

Female wheelchair user against neon background

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
  • everyone at the charity understands their role – Source: Safeguarding for charities and trustees – GOV.UK (www.gov.uk)
  • No data protection policy or officer
  • 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.

  1. 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.
  2. 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.

Links

Charities Commission
Safeguarding for charities and trustees
Safeguarding and protecting people for charities and trustees

Wheelchair with fleece lined cover attached

Keep Warm & Cosy With This Fleece Lined Cover – Review

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

Keep Warm & Cosy With This Fleece Lined Cover - Review Main wheelchair cover image

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.

Links
Velcro Straps
Fleece Shawl

If you would like to work with me don’t hesitate to Contact Me.  Feel free to leave a comment below.

Cazbarr - Family sitting on a sofa with an empty wheelchair beside them

Wheelchair Life – Is This A Fate Worse Than Death?

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

Cartoon Cazbar sitting in a wheelchair with tank tyres

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

Wheelchair Life - Is This A Fate Worse Than Death? - Male wheelchair user playing wheelchair basketball.

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.

Source: NHS UK

Benefits

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

The words mental health on top of blank scrabble tiles.

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.

Links

If you would like to work with me don’t hesitate to Contact Me.  Feel free to leave a comment below.

Cartoon strip illustrating a person becoming a full=time wheelchair user
Services available to disabled people

Facilities Available To Disabled People – Are You Aware?

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!

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Eurokey Project

Eurokey (similar to the Raday key)

The Eurokey Project is 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.

Source: Euro WC key: CBF Darmstadt (cbf-da.de)

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Just Can’t Wait Toilet Card

Just can't wait card from bladder & bowel company

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.

Eligibility

No requirements, just a few questions.

Cost: FREE

Source: FREE Just Can’t Wait Toilet Card – Bladder & Bowel Community (bladderandbowel.org)

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Disabled Persons Railcard

Example of disabled rail card

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

Cost: 1 Year – £20 3 Years – £54

Source: Disabled Persons Railcard | Official Retailer | National Rail (disabledpersons-railcard.co.uk)

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Fuel Service

Fuel service app to get help when filling your car at a petrol station

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.

Cost: FREE

Source: fuelService – Helping disabled drivers refuel their cars

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Blue Badge

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:

  • you are in receipt of the higher rate of the mobility component of the Disability Living Allowance (DLA)
  • 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.

Source: Who can get a Blue Badge? – GOV.UK (www.gov.uk)

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Motability

White circle of petals next to the word Motability on a blue background

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.

Eligibility

For a full list of benefits and more information about eligibility, please vist their website: Allowances and rates | Motability Scheme

Cost: Individual to each applicant

Source: Motability Scheme | Lease a car, WAV, scooter or wheelchair

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Disabled Persons Freedom Pass

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. Full details: Bus | London Councils

Eligibility

To be eligible for a disabled persons Freedom Pass:

  • Your sole or principal residence in London And

Cost: FREE

Source: Disabled persons Freedom Pass | London Councils

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Taxicard

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.

Application details: Apply for Taxicard in your borough | London Councils

Eligibility

I haven’t been able to find any information regarding this on their website.

Cost: Again, I’ve no information. I believe the card is free and you just pay a subsidised taxi fare.

Source: Taxicard | London Councils

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Radar Key

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)

Source: The official and only genuine Radar Key – Disability Rights UK

Passport Services If You’re Disabled

There are free services and facilities to help you with your passport application if you’re disabled.

Source: Passport services – Gov.uk

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More Facilities

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.

Related Blogs

Blue Badge is Changing

Disabled Facilities: Do You Abuse Them? I Bet You Have!

If you would like to work with me don’t hesitate to Contact Me.

Cartoon strip about facilities for disabled people
My pimped up wheelchair with red cushion covers

Wheelchair Life – Ignorance, Personal Space Invasion & Damage!

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

Wheelchair Life - Ignorance, Personal Space Invasion & Damage! - My wheelchair in red cushion covers with black lace trim

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:

 

Out & About

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

My wheelchair headrest with silver spikes across the top

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
Broken wheelchair sat next to an aeroplane.

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!!

Links

What To Do If Your Wheelchair Is Damaged

CAA – Travelling with mobility and medical equipment

Related Blogs

WAV – What Is It And Why has It Improved My Independence?

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

If you would like to work with me don’t hesitate to Contact Me.  Feel free to leave a comment below.

Hospital with no entry sign

Medical Infrastructure Excludes Disabled People – Results In Preventable Deaths

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

Hospital beds on a hospital ward

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!

Disabled toilet at a private health clinic with a sign saying "Less Abled WC"
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

Hand holding a sad face emoji

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

Red chairs sat in a row against a wall

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!

Related Blogs

PillTime: Home Deliver Pharmacy Service

Electric Wheelchair Assessment: Being Told What I Do & Don’t Need As I Obviously Don’t Know My Own Disability!

If you would like to work with me don’t hesitate to Contact Me.

Torso showing face in pain from IBS

My Depression Is Made Worse By My IBS & Anxiety.

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)?

Medical image of the intestine

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
  • You want to run away/escape from the situation
  • You’re on dge and alert to everything around you

(Source: anxietyuk).

How I Feel Daily

Person sitting on floor with their own shadow hovering over them in a menacing way

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

Woman looking stressed holding hand up to suggest stop

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!

If you liked my blog, leave a comment below. If you would like to work with me or anything you would like me to blog about, don’t hesitate to Contact Me.

Disability Blogger and reviewer of products & services - Family room not accessible to disabled families

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

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

Hotels Don't Offer Accessible Family Rooms, Is This Discrimination? - Long hotel corridor.

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!

Contacted Hotels

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?

Family room not accessible to disabled families

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

My Facebook group to help bring more awareness to this issue and hopefully get more done: UK Hotels No Accessible Family Rooms | Facebook

Wish to help us with this campaign, please do get in touch.

Related Blogs

So You Advertise As Accessible?

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.

High street with speech bubbles saying "We're Accessible"

So You Advertise As Accessible?

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.

Being Accessible

So, You're Accessible - Equality Act 2010 & Buildings Regulation compliant Disabled Toilet
Equality Act 2010 & Buildings Regulation compliant Disabled Toilet

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

  1. Make sure you are actually accessible BEFORE advertising as so.
  2. 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!!
  3. Give disabled people more information. Have a section on your website explaining how you are accessible.
  4. 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!!

More Blogs

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

WAV – What Is It And Why has It Improved My Independence?

Wheelchair Life – Ignorance, Personal Space Invasion & Damage!

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.

White outlined wheelchair in shopping mall

Online Christmas Shopping During A Pandemic As A Disabled Person

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 - Safety - A as a padlock T as a key

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.

Santa in his sleigh with raindeers

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Cazbarr signature that flashes on off
Wheelchair next to a checklist

Electric Wheelchair Assessment: Being Told What I Do & Don’t Need As I Obviously Don’t Know My Own Disability!

Electric Wheelchair Assessment – Being assessed for disability aids is stressful enough, to say the least. When you’re faced with someone who is telling you what you do and don’t need due to your disability. This can be soul-destroying, frustrating, belittling and extremely angering! This was how I was made to feel when I was being assessed for my Electric Wheelchair!

I have been a full-time wheelchair user for over 15 years and I’ve had my disability (Arthrogryposis) since birth. I do believe that makes me an expert on MY disability, not anyone else!

My Assessment

Having had my previous electric chair for over 5 years, I was due to have this replaced. I, therefore, needed an assessment for a new wheelchair. This would be done at my NHS wheelchair service.

Invacare Fox Electric Wheelchair

At my assessment, I was happily told by my clinician that I would be having the “Invacare Fox” wheelchair! This decision was made without any discussion with me. (This immediately set the tone for this assessment)! How did this decision get made without discussing this with the person who was actually going to use the wheelchair and finding out first, if anything has changed? Is this not the point of an assessment?

My clinician’s attitude was that of excitement as she totally believed The Invacare Fox electric wheelchair was the one for me. She brought the wheelchair out to me and immediately expected me to be as elated as her. Instead, I could tell immediately, this was not the chair for me!

I went with the flow and got into the chair. I told my clinician that the footrest hangers were digging into the side of my knees. Not a problem she said, this can be rectified by adding some padding to the shoulders. I explained this had been done on a previous chair and it only made matters worse. (I still have the indentations in my legs) and I showed her these.

She seemed put out and went on to say we could put cushions down my side. (Between me and the armrest guard). Again, I explained this would not be suitable as I self-transfer in and out of my chair regularly. The cushions would fall to the floor repeatedly and as I can not reach the floor, I would not be able to retrieve them.

Problem After Problem

The issues being presented, included armrests not being height adjustable, to which she claimed having one shoulder higher, will cause problems in the future. (So, the fact I need one arm higher to keep my back straight, to prevent pain is not relevant?) 15 years down the road and I am still not suffering any pain in my shoulder!!

She explained that another type of armrest could be fitted if I really wanted them height adjustable. Errmm I don’t “want” them I told her, I “need” them to be adjustable. I wasn’t willing to accept the chair until she confirmed the armrest could actually come adjustable. Guess what? They didn’t! Thankfully she didn’t mention sticking cushions to the armrests to make them higher!!

The backrest of the chair was tilted backwards and unable to be repositioned. Which meant I would be slightly reclined sitting in the wheelchair. Again, I need to be sitting as upright as possible, to prevent back pain. Clinicians response was to have a different backrest. She attached a different backrest that was one of the options for the chair. This backrest was completely uncomfortable and prevented a full range of movement.

So once again, rather than give in to the fact that this wheelchair was completely unsuitable. She suggested using cushions with the original backrest. She likes these bloody cushions!!

I was getting really fed up now, I told her that I would definitely NOT be having this chair. She banged on about not having any other suitable chairs for me and that budget didn’t allow for anything else. I said she (wheelchair service) had a duty of care to make sure any wheelchair supplied to me fits my needs. This chair didn’t, so she was going to have to sort it out.

Second Assessment

As you can imagine, I was both disappointed and furious leaving my so-called assessment. When I got home, I phoned the wheelchair service to explain what had happened and requested another assessment, only this time with someone different.

Thankfully this is what exactly happened. I had an assessment with a different clinician. A lady I had dealt with many time previously and a sales rep from presumably one of their suppliers.

I was shown one wheelchair, unfortunately, it escapes my memory as to what it was called. This again was not suitable, the footrests were causing issues and no alternative option available for the chair. They then showed me an Invacare Spectra XTR2. When I sat in this, I immediately felt the difference. I was then told this particular chair came with tilt and recline. This would make all the difference for my back. (My Spectra XTR2 Review).

I rode it out to our car in the car park to make sure it would fit, (we had a Vauxhall Astra Sports Tourer at the time) and already had car ramps for my chair I was using at the time. Took a little while but we worked out how the chair would fit in the car. It was agreed that this chair was the most suitable for me and I could expect to receive the chair in a few weeks.

Attitude Is Everything!

Attitude is indeed very important. Here I was, having a supposed assessment for an electric wheelchair and I was told the decision had already been decided (without me) as to what chair I was going to receive!! No wonder I was peed off!!

My clinician came across like she was hell-bent on the fact that the Fox was the right chair for me and took whatever measures necessary to make it work. It didn’t seem to matter to her if this made my life more difficult and/or painful!! Trouble was, her solution was always the same, stuff a cushion there and problem solved.

Unfortunately for her, her attitude regarding the chair and me put me right off from the offset. I knew very early on that this was not the chair for me, so for a quiet life, I switched off and just went through the motions until I knew I couldn’t take anymore and decided to tell her so!

Conclusion

We all know how bad funding is in the NHS but this is NO excuse to decide what life-changing equipment a person is GOING to have BEFORE even discussing it with the client/patient etc.

I’ve had my fair share of sales-people try to force disability products onto me and I have learned the hard way to stick up for myself and this was why I said no to the Fox. I practically demanded another assessment with someone else and If I hadn’t, I may have ended up with a wheelchair that would have caused me no end of trouble and even severe pain in my back. Don’t be afraid to stand up for yourself. It is your health, your body that will be affected if you don’t.

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Disabled Toilet Blue Badge bay and radar key

Disabled Facilities: Do You Abuse Them? I Bet You Have!

Disabled Facilities: Do You Abuse Them? I Bet You Have! – Disabled facilities are there to help disabled people achieve the same daily tasks able-bodied people take for granted. By abusing these facilities, you are preventing us from living our daily life as you expect to live yours…..Without fighting for your basic human rights!!

Disabled Toilets: How Many Times Have You Used One?

My life as a wheelchair user is difficult enough with the barriers I face on a daily basis. Shops I’m unable to enter due to lack of access, card readers too high/too far back to reach when paying for my shopping, people leaning on my wheelchair like I’m some sort of leaning post, derogatory comments etc, the list truly is endless.

Disabled Facilities:  Do You Abuse Them?  I Bet You Have!  -  Disabled toilet fitted with handrails, changing table.

So when I need to use the toilet and an able-bodied person walks out of the disabled toilet, I’m angry, why? Well, one of the reasons is I suffer from IBS, it is one of the most unpredictable illnesses I suffer from. The urgency one feels when having an attack is frightening, so when you are made to wait for probably the only disabled toilet available and a non-disabled person walks out, why wouldn’t I be furious?

I have been close more times than I care to mention to having an “accident” because someone’s selfishness has made me wait for a disabled toilet unnecessarily. Who wants that? I certainly don’t, especially when it could have been avoided!

Changing places toilets

Changing places toilets are important to many disabled people as they have a changing table for those that need assistance going to the toilet. This is obviously much more preferable than having to lie down on dirty, wet, urine-stained flooring, which is what has to happen if a changing places toilet is not available or present. You really would be disgusted and angry if it was your child or family member who had to lie on this kind of filthy flooring.

Most standard Men & Ladies toilets have more than one cubicle/urinal for use. To use and take away what is normally the only disabled toilet available is not only selfish but inconsiderate to those of us that have medical reasons for “needing” to use a toilet urgently.

Please in future, be more mindful of which toilet you use.

Disabled Parking Bays: You Will Only Be Two Minutes, So It’s OK!

Disabled Facilities: Do You Abuse Them? I Bet You Have! – I’m fed up with the number of times I’ve been told, “I’ll only be a minute”, “I’m just popping to cash machine, I won’t be long”!! I don’t care how long you will be!!! IT IS ILLEGAL to park in a disabled parking bay without a blue badge. Currently, the average fine for parking illegally in an enforceable disabled person parking bay is £30 which can rise to a maximum of £1000. Personally, I don’t believe that’s much of a deterrent!!

Disabled Facilities:  Do You Abuse Them?  I Bet You Have! - Car parked in a disabled bay with no blue badge on display
Rule 241 of the Highway Code says:

You MUST NOT park in parking spaces reserved for specific users, such as Blue Badge holders, residents or motorcycles unless entitled to do so. Source: www.gov.uk – Highway Code

Parking in a disabled bay illegally can mean the difference between me completing my task, shopping, Dr’s/hospital appointment, attending a meeting or having to turn around and go back home again. There have been numerous occasions where I have had to go home without being able to do whatever it was I set out to do and that is the key here, not being able to do what I want/need to do!

Your selfishness and inconsideration have a detrimental effect on my daily life, you can not begin to understand the strain my body goes through when I have to get in/out of my wheelchair to get in/out of the car. Not once but 4 times just to do one trip!! It can take up to 2 days for my body to recover, so no, I am not tolerant of your behaviour……Why should I be!!

I wonder how tolerant you would be about these inconsiderate actions if I were the one telling you that “I will only be a minute, just popping to the cash machine”, or “I’m just dropping this letter off”? If this was a daily occurrence in your life, how accepting would you be?

Wheelchair Space on Buses: You Didn’t Fight For Them, Yet Happy to Prevent Those That Did From Using Them!

Disabled Facilities:  Do You Abuse Them?  I Bet You Have! - Sign explaining wheelchair has priority.


Well, where do I start with this one? Oh yes, disabled people fought and fought for these spaces, year after year, after year until finally, we succeeded. Then, along came buggy pushers and thought it quite acceptable to use these spaces when a wheelchair user needs it, you know, the ones we disabled people fought for! The space has that lovely big blue sticker stating priority wheelchair area. Exactly!!!

Where were all the buggy pushers when we were fighting for this space? Hmmm? exactly! Yet now the hard work has been done and the wheelchair space is now implemented, you are happy to take advantage of the wheelchair space provided for wheelchair users!!

Now don’t get me wrong, I really have NO objection to buggy pushers using this space, IF ONLY YOU WOULD MOVE WHEN NEEDED BY A WHEELCHAIR USER!!!!! The problem is that quite a lot of you buggy pushers REFUSE blankly to move……The signage is very clear in it’s meaning!! You are more than welcome to use the wheelchair space if NOT NEEDED by a wheelchair user. If it is needed, you MUST MOVE. It really isn’t rocket science you know.

It really does infuriate me when this happens as we wheelchair users only have ONE place we can use on a bus, buggy pushers have other options available to them if they so wish. You are basically taking away our right to travel as able-bodied travellers would expect to travel.

Legal Battle

Mr Paulley successfully sued FirstGroup at Leeds County Court for unlawful discrimination against him due to his disability. However, First Group appealed and the case was finally heard by the Supreme Court. On 18 January 2017, it made a landmark ruling that bus companies must end ‘first come, first served’ policies and do more to cater for wheelchair users. Read more: Equality and Human Right Commission

Conclusion

At the end of the day, like it or not, disabled people are not looking for “special treatment/services”, we just want to be able to live our lives as independently as possible and that does mean adjustments need to be made to standardised services.

Simple example. If your vision is not 20/20, what do you do? You visit an optician to get your eyesight tested, yes? If it turns out that you need glasses, you get them. So why should it be any different for someone who’s legs do not work to not be allowed to use an adapted toilet? How would you feel if you were told you couldn’t have/wear the glasses you “needed” to perform your daily tasks???? Think about that one!!

Disabled people are told daily, they can’t have this, can’t use that all because some of you are too selfish and self-important to even try to understand why we “need” these adaptions.

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Head with a cloud over the top half

Brain Fog: A Heart Attack Side Effect

Brain Fog: A Heart Attack Side Effect – Brain fog can be caused by many many different medical conditions, mine was due to my heart attack a couple of years ago. Brain fog is much more debilitating than most people realise. When brain fog strikes, a person can have trouble remembering things and processing information. They might also find it difficult to concentrate and pay attention, or that their thoughts are disorganised. This describes my brain fog down to a tee!

What is Brain Fog?

According to Healthline.com they say:

“Brain fog isn’t a medical condition itself, but rather a symptom of other medical conditions. It’s a type of cognitive dysfunction involving:

  • Memory problems
  • Lack of mental clarity
  • Poor concentration
  • Inability to focus

Brain Fog: A Heart Attack Side Effect - Brain with an out of order sign

Some people also describe it as mental fatigue. Depending on the severity of brain fog, it can interfere with work or school. But it doesn’t have to be a permanent fixture in your life”.

For me, brain fog affects me in many different ways. I have days where amazing words just fly out of my mouth, like today, when discussing this blog with hubby I was explaining how some days I can’t remember the name of the “item” pen, or simple everyday words and the next, I can come out with words like I’m some sort of professor! (Beleive it or not, I was going to use the words I used while talking with hubby but because I took a break for 5 mins, I’ve no recollection of what the word was, that I used)…..Extremely frustrating!

I think what frustrates me the most is when I get interrupted for whatever reason, and my train of thought is completely destroyed. I really do have to sit and seriously think as to what I was previously thinking of and try and get my thinking process back on track. (That’s why it seems to take me forever to get a blog finished), I live in a madhouse with two kids (albeit practically grown-up) a husband who thinks he’s a child and a 2-year old Beagle dog. When on earth do I get time to myself to just write?

What Are The Causes of Brain Fog?

Websites that talk of brain fog mention the following as causes for brain fog:

  • Stress
  • Lack of sleep
  • Hormonal changes
  • Diet
  • Medications
  • Medical conditions

The full description can be found on Healthline.com

I know for me personally, lack of sleep is my worst nightmare (pardon the pun). If I haven’t got enough sleep, my brain fog is at an all-time high and this doubled with me being grumpy due to lack of sleep, is not a good combination. My family have come to realise the best thing to do is give me a wide berth.

There are days I wake up more tired than I was before going to bed. My head feels like it’s filled with cotton wool and trying to take in conversations or simple instructions can seem like I’m trying to learn quantum physics. I get so frustrated and even angry at myself on these days as I used to be so good at both of these and more.

Having a physical disability, words became my friend so to speak. Always a smart, funny answer to most things. I felt I was pretty good at tackling most things (written form). The flip side from this though is since my heart attack, my tolerance level for BS has become practically 0…..So, when I need to write important letters for whatever reason, I seem to be able to get straight to the point, no waffling as I used to do. Strange!

Brain Fog: A Heart Attack Side Effect - No smoking sign

Stress and being a smoker is what caused the onset of my heart attack. I was fighting two companies at the time, one (my housing association re my through floor lift), the other, an insurance claim due to a relatives caravan catching fire. Not a great time!

Stress is a nasty entity and is very much underrated as the cause of a lot of medical issues. The trouble is, how do you combat stress? Unless you lock yourself away from the world, it is near impossible but that is for another blog (maybe).

How Is Brain Fog Diagnosed?

See your doctor if you have persistent lack of clarity that worsens or doesn’t improve. A single test can’t diagnose brain fog. Brain fog may signal an underlying issue, so your doctor will conduct a physical examination and ask about your:

  • Mental health
  • Diet
  • Level of physical activity
  • Current medications or supplements

You should let your doctor know about other symptoms you might have. For example, someone with hypothyroidism may have brain fog along with hair loss, dry skin, weight gain, or brittle nails.

Blood work can help your doctor identify the cause of brain fog. A blood test can detect the following:

  • Abnormal glucose levels
  • Poor liver, kidney, and thyroid function
  • Nutritional deficiencies
  • Infections
  • Inflammatory diseases

Based on the results, your doctor will determine whether to investigate further. Other diagnostic tools may include imaging tests to look inside the body, such as X-rays, MRI, or CT scans. The doctor may also conduct allergy testing or a sleep study to check for a sleep disorder.

Keeping a food journal can help you determine if your diet contributes to brain fog.

While in hospital recovering from my HA I was told I could now suffer from brain fog (as this is a side effect) and it may be permanent or it may not……That was it! No follow up or proper diagnosis.

I have been to my GP regarding my symptoms but I’m just made feel that I’m blowing it all out of proportion or it’s just all in my head. So I have given up now.

How To Treat It

Brain fog treatment depends on the cause.

For example, if you’re anaemic, iron supplements may increase your production of red blood cells and reduce your brain fog. If you’re diagnosed with an autoimmune disease, your doctor may recommend a corticosteroid or other medication to reduce inflammation or suppress the immune system.

Sometimes, relieving brain fog is a matter of correcting a nutritional deficiency, switching medications, or improving the quality of your sleep.

Home remedies to improve brain fog include:

  • Sleeping 8 to 9 hours per night
  • Managing stress by knowing your limitations and avoiding excessive alcohol and caffeine
  • Exercising
  • Strengthening your brainpower (try volunteering or solving brain puzzles)
  • Finding enjoyable activities
  • Increasing your intake of protein, fruits, vegetables, and healthy fats

Hmmm, not sure I agree with a lot of these.

Sleeping 8 to 9 hours per night – I do, do this and still feel as tired as I did going to bed, some days more so.

Brain Fog: A Heart Attack Side Effect - Head showing brain illustration with listed effects of brain fog

Managing stress by knowing your limitations and avoiding excessive alcohol and caffeine – Seriously, how can one do this, life is full of stresses, especially someone with a disability. This gives a whole new level of stresses!

Exercising – Hmm, as a wheelchair user with weak arms, hands and legs, not an easy task by any means. Hubby got the Oculus Quest VR headset recently, I played Beat Saber for 3 songs and I couldn’t use my arms for 2 days after. Seriously, my arms felt lead weights and I couldn’t raise my arms to drink or eat. I have the same issue if I type for too long, my arms become tired and weak!

Strengthening your brainpower (try volunteering or solving brain puzzles) – I build websites, I blog, I volunteer, I play scrabble, chess and I’m learning how to do 3D modelling. I think I’m taxing my brain quite enough thanks. Does it help? I really don’t know, I would need to cease doing all of these for a few months to know for certain. Sorry, not prepared to do that.

Finding enjoyable activities – Think I just covered that 🙂

Increasing your intake of protein, fruits, vegetables, and healthy fats – Trying to improve since my HA.

Source of information: Healthline.com

Conclusion

Like most illness, I have good days and I have bad days. The good days are still bad days as I am never free of my brain fog. I suffer from it on a daily basis. Just the severity is different from day-to-day. My real bad days, I don’t speak to a sole as I am terrified I will make a big mistake, or sign up to something I shouldn’t have, or generally make bad decisions. If I do need to make a decision about something, I run it all past my hubby first. This terrifies me as I was always someone with good common-sense and a sensible head on my shoulders. (I feel like I can’t trust my own judgement).

If I get a phone call on a bad day, well actually, any day, I put it on loudspeaker so hubby can hear it too, this way, if I forget something important, hopefully, he can help me. I’m often making notes on a phone call to help with this.

After my HA, I felt very badly let down by the medical profession as a whole. My GP always seemed to make me feel I was burdening them with trivial stuff and why was I wasting their time. I suffered (and probably still do) with depression and my anxiety has worsened to no end. My GP just handed me some leaflets and basically told to get on with it.

The other problem is that this is a hidden disability and believe me, disability it is! (No-one knows you have brain fog unless you tell them). It is difficult when out and about and you’re trying to remember what you went into a shop for, or you can’t remember where you put your bank card or loyalty card when at the till. It can be rather embarrassing to say the least.

My best mate suffers from brain fog too. We both end up giggling over the words we fail to remember or stop mid-sentence cos we can’t remember what we were going to say. It’s nice I can feel comfortable with someone who fully understands my daily struggles.

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Non-disabled person standing between two wheelchair users asking "what's wrong with you?"

What’s Wrong With You?: Should I Take Offence?

When I’m Asked What’s Wrong With You?: Should I Take Offence? – As a disabled person myself and a full-time wheelchair user. I’m often asked by complete strangers, “what is wrong with you?”. Some people take great offence at this, yet these same people bang on about how ignorant ableds are! Can ableds win?

What’s Wrong With You?

On holiday last year with my family, I experienced good and bad attitudes from non-disabled people.

The plus side (in my opinion):

It was at the end of a wonderful ’80s-themed night aboard a ship I was cruising on. (Read my review). We were finishing our drinks after dancing the night away to all the popular 80s music. A lady sitting at the next table asked me “do you mind me asking what is wrong with you?”. My reply, “no, of course not”. I genuinely didn’t mind.

Front of cruise ship with blue interior lights

I explained how I was born with my disability Arthrogryposis. How this affects my daily life and how my husband is my carer etc. etc. She seemed genuinely interested and even asked more questions when she didn’t understand something. She was amazed when I spoke of the barriers disabled people face on a daily basis by society/buildings etc. I explained this was why I loved cruising, as it was one of the more accessible holidays available to me. She couldn’t understand why access wasn’t better.

I spoke for quite a while. I hadn’t realised how passionate I had become in explaining why I do the things I do. How my disability affects my outlook on life. So I wrapped things up and said goodnight.

The bad side:

(again on our cruise, we (my family) had a great but tiring day at port this particular day. I was making my way back to my cabin and while in the lift alone, this lady got on at another floor and immediately starting complaining to me how sore her feet were and how she had walked and walked and walked the whole day. How she couldn’t wait to take her shoes off and rest her poor feet. Now maybe it was because I was tired but all I wanted to shout at her was “at least you bloody well have legs that you can use to walk and walk and walk!”.

Should I Get Offended?

Should I get offended? I suppose this question can’t really be answered with a simple yes or no. It boils down to the individual’s perception of they deem to be offensive, the same way as asking “did you find that joke funny?”. Each person has their own idea of what is funny, the same way as each individual find some things offensive while others do not. Me personally, I’m not offended if someone genuinely wants to know. But that’s the key for me if the person asking is genuine!

Open quotation marks in black
Close quotation marks in black

Offend: To irritate, annoy, or anger; – Cause resentful displeasure in: – To affect (the sense, taste, etc.) disagreeably. – To hurt or cause pain to.

I kinda get it when disabled people say how rude and personal this is but, in all fairness, you can decide how personal your answer will be…..Can you not? I can’t help but feel that some disabled people want their cake and eat it. Some go on and on about how ableds are so uneducated and ignorant towards disability, yet when they take the time to ask you about it, you go all offended and say how rude of them?

When I'm Asked What's Wrong With You?:  Should I Take Offence?  -  Red no entry sign over a blue shaped wheelchair user

I love someone wanting to take time out of their day, holiday, shopping or whatever to ask me about my disability. I hope that I am contributing to helping people better understand disability (well mine anyway), so they may pass this on or prevent discrimination in the future.

Of course, I think it’s fairly easy to know if someone is being false or malicious in their questioning and yes, I totally agree they should not be entertained!

Disability Assumptions

One of the things I do get offended by is the fact my husband wears an artificial left leg and normally the first thing strangers assume is that he has been in the forces and lost his leg. They seem to forget that he may have been born with a disability. I mean, there is no other way to have an artificial limb, is there!!

The other is that I have polio. When I used to walk with my calipers, 90% of people (especially minicab drivers) always assumed I had polio. (Not sure if this was anything to do with a common charity box outside a lot of shops back then that was a young boy wearing one calliper on his leg). I would then have to correct them and explain what Arthrogryposis was 🙂

To me, assumptions are more offensive than just asking me “what’s wrong with you”. I am always happy to take the time to talk to anyone wishing to be educated.

Conclusion

If you want to know about my disability, I will always do my best to explain it to you, provided you are genuinely interested. I understand how difficult and uncomfortable it might be for some, to talk to disabled people. People are only human at the end of the day and are scared of “different”.

I saw a video some time ago where a wheelchair user (male) sat in a very popular area (can’t remember where now), and sat with a cardboard sign saying people could ask him anything about his disability. I’ve often thought of doing this myself. I am intrigued as to what people would ask me.

In my opinion, disabled people who complain and give out about how rude ableds are for wanting to know about their disability don’t have the right to complain and moan about the same ableds of being ignorant or uneducated!

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Cazbarr dressed in leather jeggings and jade sparkly top

Being Disabled: Should It Mean I Can’t dress nicely?

Being Disabled: Should It Mean I Can’t dress nicely? I take a look at high street clothing and adaptive clothing to see how easy it is to dress nicely as a disabled person who is also a wheelchair user.

Dressing Nicely

Finding clothes that sit right AND look nice on a person who is always in a sitting position is not an easy task. When I go out, I want to look my best. It makes me feel happy and I feel much more confident.

I enjoy coordinating my clothes, shoes and make-up. I have different styles of clothing depending on the situation I am going out for. Rock chic look for karaoke nights down the pub, jacket & trousers for when I meet with shop managers and casual for meeting up with friends.

Being Disabled: Should It Mean I Can't dress nicely?  Woman sitting on the floor posing for a fashion shot

Fashion, unfortunately, is not geared for people in wheelchairs or disabled people in general. For example, models are 90% of the time in a standing position when being photographed for magazines/websites etc. If they do happen to be in a sitting position, it’s not a natural sitting position a wheelchair user would be sitting in.

Heels of any height is a no-no for me, as transferring in/out of my chair becomes impossible, I have to stick with flat shoes (ballerina type) which can leave a lot to be desired when it comes to style/design.

I have seen some lovely dresses hanging on the rail in clothes shops but as soon as I try it on, (oh, don’t get me started on dressing/fitting rooms in these shops) it is dreadful. It all bunches up on my lap, making the dress look far too long for me and looking like it could do with a good iron. So I now know it is pretty worthless even looking at dresses when out clothes shopping.

It has taken me many years to know what will suit me as a wheelchair user. Not only because I sit down all day but because of my body shape too. It’s still not an exact science but the majority of the time I can pick up an item, look at it and know if it’s for me. Well, I say that but I still have to fit them on as sizing greatly differs from shop to shop.

High Street v Adaptive Clothing for Disabled People

Adaptive clothing, I have to admit, is not something I ever think about. I suppose this may have something to do with the fact it’s not widely advertised, therefore, when doing a clothing search online, I can honestly say, I have never seen anything to do with adaptive clothing appear in my results. I have to tell my search engine I am searching for “Adaptive Clothing” before anything will appear.

Like everything else that is sold to make “disabled people’s lives better/easier”, it can come at a very high price:

Red linen wrap skirt with velcro fastening.

This is a wrap-around red skirt, it has two pockets and is fastened with a velcro strip on the waistband. I see a couple of issues with this skirt:

  1. How strong is the velcro? Will it come undone with manoeuvring, transferring out of my chair?
  2. Anyone half decent with a needle could attach a piece of velcro themselves.
  3. HOW MUCH?? £52.50…….You are having a laugh!!

There is no way, under any circumstances would I pay £52 for a skirt, no way!!

Red wrap skirt with tie fastening

By comparison, this skirt is also a wrap-around style…..Cost? £9.00 (was £12.99). Even at full price, it’s much more affordable. At the full price, you are making a saving of £39.51, not something to be snubbed at.

The item description says: “Calf-length skirt in a softly draping viscose weave. High waist with concealed press-studs and ties at one side, a wrapover front and asymmetric hem. Unlined”. A little needlework and a piece of velcro could be put in place of press stud.

Black decorative line with swirl in the center
Pair of floral jersey pull on trousers

Ok, how is this item any different to a pair of leggings??? They say ” Fully elasticated waistband for ease of dressing”. Errm, so are all the trousers I possess that I have bought from high street retailers! Again, how are these “Adaptive”?? And you want £40 quid……No!

At the end of the day, you can wheel into any high street clothing retailer and find an identical designed item for a much cheaper price!

Black and grey coloured tie dye leggings

These leggings may not be floral but no different from the pair above: “Made from a stretch jersey fabric for comfortable wear, they feature an elasticated waistband and finish with a tie dye print”.

The price of these are again much more affordable: £14.99

I know which pair I would purchase.

So, by comparison, these next two items are what I would agree are in fact “Adaptive” pieces of clothing:

Black decorative line with swirl in the center
Adaptive navy jacket made for wheelchair users

Now this is what I would believe to be an adaptive jacket, they say:

“This very comfortable Wheelchair Jacket has been specifically designed for wheelchair users. The front of the jacket has a shorter cut to prevent it bunching up and to keep it looking stylish at all times. Similarly, the arms of the jacket are reinforced on the insides for extra strength and durability, ensuring that the Wheelchair Jacket is strong enough to cope with all the usual scuffs and abrasions that occur when self-propelling without any loss of performance”.

So the problem I mentioned about dresses bunching up at the front has been catered for and I know how sleeves can get damaged very quickly while self-propelling in a manual wheelchair.

Look at that, a reasonable price too: £16.48 Just goes to show, adaptive does not have to mean expensive!

Black decorative line with swirl in the center
Adaptive polo shirt in light blue

This is a polo shirt that the wearer can put on like a back-to-front jacket. Or at least that’s what I think they mean.

The description says: “Full back overlap with snaps at shoulders. This adaptive polo shirt for men completely opens up, allowing the individual’s arms to be slid into the garment sleeves without ever having to raise/lower their arms or struggle with small neck openings. The back overlap is then folded over and domed/snapped into place”. 

I’m extremely disappointed that this company shows no images of how the “Adaptive” part works. Just looks like an ordinary polo shirt as it stands.

Domed/snapped?? Not sure what that means. But at the price of £76.92, I really couldn’t care less as again this is just legalised robbery!!

Men’s adaptive shirts

Black decorative line with swirl in the center
Red suede ankle boot with fleece lining and lace fastening.

I have saved the most expensive for last…..Cosyfeet pair of boots: A website: Adaptaware, directs you to Cosyfeet when looking on their site for footwear.

As I mentioned before, my feet are odd sized and shaped, therefore I normally need to buy 2 pairs of shoes to accommodate this. But bugger if I would purchase 2 pairs of these.

Ironically, if they were more reasonably priced, I would have bought a pair, I like the style of them. Unfortunately, at the wonderful price of £112.00 – £93.33 without VAT I would not even consider purchasing a pair.

Would this be classed as a VAT relief disability aid? Hmm not sure myself!

  • 100% waterproof to keep feet dry in all weathers
  • Breathable and with climate control to keep feet comfy and fresh
  • Windproof to keep feet warm and comfy
  • Water-resistant lace adjusts to fit a range of swelling
  • Roomier than it looks due to hidden-depth design
  • Seam-free toe area is ideal for problem toes
  • Lightweight sole is durable, shock-absorbing and cleated for good grip
  • Deep collar offers additional stability around the ankle
  • Comfort footbed is removable for extra depth – ideal for orthotics

The description is still leaving me with the question of how are these “adaptive”? Hang on…….Seam-free toe area? Is it just me, or does it look like the seam goes right over the toe area?. Climate control?? Are you for real? Where’s the temp knob? Hidden depth design…..Oh, this must be like the “luggage” in Terry Pratchett books.

Conclusion

It would seem that some items described as “Adaptive” are truly adaptive and would benefit many disabled people but…As with all aspects of life, it would also seem that some companies are trying to “cash in” on the £259 Billion spending power of disabled people by advertising some of their products as “Adaptive” when clearly it is no more adaptive than I am Lady Ga Ga!!

The prices of the majority of these products are purely legalised robbery! Do these adaptive clothing really cost this much to make? I doubt it very much. Disabled people have much more to pay out for in comparison to ableds, yet still, companies who advertise to help make disabled’s lives easier, do this by fleecing us! In turn, making our financial lives much harder to impossible!!

Some of these products can be bought from many high street shops and with a little alteration, can be “Adaptive”. Yes, I’m aware not all people can do this (physically) I for one. The question is, would it be cheaper to purchase high street product and pay someone to make alterations, or purchase the “Adaptive” product??

As a disabled person, of course, I would love my daily life to be easier but I’m just not willing to pay the kind of prices that are being asked from some, of these adaptive clothing. Shoes are my nemesis, I have one foot that swells up much more than the other. Depending on style/sizing, I have to buy two pairs of shoes so I can have one of the shoes in the next size up needed for me to wear them. Boots? Well, I’ve given up trying to find a nice pair of those for wintertime. I really like the boots above but will not pay that price.

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Prices/information were correct at the time this blog went live. (I have no affiliation with any third parties I may have linked to.)

White circle of petals next to the word Motability on a blue background

Disabled People: Brand New Car Every Three Years!

Disabled people: Brand New Car Every Three Years! The biggest misconception is that disabled people get a brand new car for free. Not true! The Motability Scheme helps disabled people in receipt of the higher rate mobility allowance by exchanging this allowance to lease a new affordable car, Wheelchair Accessible Vehicle, scooter or powered wheelchair.

Motability

In a nutshell, anyone in receipt of the higher rate mobility allowance (such as the Enhanced Rate of the Mobility Component of Personal Independence Payment or the Higher Rate Mobility Component of Disability Living Allowance) can use their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle from Motability. The lease is normally for three years and five years for a WAV (Wheelchair Accessible Vehicle).

Motability’s standard lease takes care of running costs such as insurance for up to three named drivers (this doesn’t have to be you), servicing, maintenance, breakdown cover and tyre and windscreen repair and replacement. All you need to do is add fuel and go.

Misconception

I’ve had it said to me many many times that it must be so good getting a brand new car every couple of years for free! Yeah, I suppose it would be great but this is just not the case. The look on those people’s faces when I explain that’s not the case and I actually pay for my car on a monthly basis is a cross between shock and disbelief.

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The look on those people’s faces when I explain that’s not the case and I actually pay for my car on a monthly basis is a cross between shock and disbelief.

I give up the higher rate of my mobility component so I may have a car to allow me my independence, rather than having to depend on other people to get my medication, shopping etc. When my son was school age, I was able to take him and pick him up from school. This was paramount to me as he was being bullied at school and suffered terrible anxiety.

Ford Tourneo WAV - Disabled people:  Brand New Car Every Three Years!
Wheelchair Accessible Vehicle

I became a full-time wheelchair user many years ago, not being able to put my own electric wheelchair in our car and drive off somewhere, means I can longer go out on my own. Therefore I am now in the process of applying for WAV (I will write about my experience, once I have received my car).

Further Information

For a full breakdown of who is eligible, how to apply and more help, check out Motability’s website.

If you want me to blog about a specific subject, or just to say hi, please don’t hesitate to Contact Me.

Train speeding through a station

Wheelchair user travels on a train for 1st time!!

Wheelchair user travels on a train for 1st time – I travelled on a train but will I do it again!! – I have been a full-time wheelchair user for over 15 years and I have NEVER travelled on a train…..Why? Fear!! Fear of being crushed, fear of being trapped in the doors, fear of my wheels getting trapped in the gap, my list of fears were endless! That was until 2 days ago when I faced my fears and went riding on the trains with a lovely man called Alan (@AlansTweets).

I met Alan at Twickenham station, where we were to start our journey. I arrived early so I could take a look around inside, to familiarise myself. Not much to see really, just a few ticket machines and a ticket office, which was closed.

We took the lift down to the platform and asked a member of staff if we could have the ramp for the next train heading to Clapham Junction on the SWR (South Western Railways) line. Not a problem, the train arrived and we got on using the ramp without any incident whatsoever. I have to say, I was extremely surprised as to how much room was available for wheelchair users, both Alan and I (both wheelchair users) had more than enough room to park our chairs.

Wheelchair user travels on a train for 1st time!! - Alan and myself sat in our wheelchairs in the disabled spaces on the train.

During our journey, Alan spoke about his experiences and the pitfalls that can happen. He said, “The key is to stay calm and be polite but firm when dealing with mishaps”. Very good advise indeed! After all, you can’t expect to travel problem free ALL the time, thing are going to go wrong, that’s called life! But, if they do go wrong, just stay calm and deal with it the best you can.

Wheelchair user travels on a train for 1st time!! - Cazbarr sat on the platform in front of a parked train.

We arrived at Clapham Junction where we jumped onto the Underground. Now I hope I have our journey correct below, it was hard taking in all this wonderful new information at once. I was like a big kid taking in all the new sights/sounds etc around me. But I think our journey went something like this:

Twickenham > Clapham Junction – SWR
Underground – Clapham Junction > Waterloo
Underground – Waterloo > Westminister – We popped out to take a look at Big Ben
Underground – Westminister > Victoria
Victoria > Twickenham – SWR

I tried my best to remember everywhere we had been, take in the sights AND remember where & how I would travel in the future and ask for assistance.

I have to say I was not looking forward to travelling on the underground, this was my biggest fear. Crowds, pushing/shoving all the things we all know about the underground. But I have to say, (ok it was approx 2:30 pm) but the underground was pleasantly not as busy as I had expected it to be. Don’t think I would ever attempt to travel in rush hour.

Wheelchair user travels on a train for 1st time!! - Big Ben clock with scaffolding

We arrived at Westminister as I asked if it would be possible to see Big Ben. We went outside the station and low and behold, what was staring me in the face? Big Ben haha, I never realised it sat right outside the station. So, we didn’t have far to go.

My only memories of train travel/underground, was as a child when my Mum would take me to Great Ormand Street hospital and we would have to use those big, rusty, caged lifts where the doors had to be slammed shut and then the big iron gate door had to be slid across. Scary days really (for a toddler). My one attempt at train travel as a late teenager is not one I am going to go into but be assured it probably was the reason I never attempted it again until now!

We then travelled back to Victoria to get on SWR back to Twickenham. Again, no problems at all……..Until we reached Twickenham and no-one turned up with the ramp! I pressed the red button so someone would be alerted to our dilemma. We spoke with whom I believe was a guard, explained our situation and then this announcement came over the train: Link is to a video Alan made of our journey, this is the announcement: https://twitter.com/i/status/1238576905135296514

Well, you can imagine how upset we both were over this. I think Alan was going to email about this. It was unfortunate that this had to be the one lip in our whole journey. Everything went lovely and smooth without any problems and then that happened!!

Will I do it again? Damn right I will. I can’t thank Alan and wife enough for taking time out of their busy schedule to take me on the train and show me how easy it can actually be…..Thank you to both of you.

Any questions, why not drop me a line using my Contact Page.

Hands holding a piece of paper with VAT at the top and coins and paper money in the background

Are You VAT Exempt? – Find Out Here Today!

Are You VAT Exempt? Did you know, as a disabled person, you may be exempt from having to pay VAT on certain items?? Neither did I!! According to Gov.uk website: If you’re disabled you’ll generally have to pay VAT on the things you buy, but VAT relief is available on a limited range of goods and services for disabled people. VAT relief may be available if you’re buying goods because of your disability. Source: Gov.uk

You’ll only be able to have eligible goods VAT-free if you’re chronically sick or disabled and the goods are for your personal or domestic use. You do not need to be registered disabled or eligible for any other benefit to qualify for VAT-free goods.

Goods you can buy VAT-free

This section has information on the goods you can buy VAT-free because of your disability including:

  • medical and surgical appliances
  • invalid wheelchairs and mobility scooters
  • equipment to aid the hard of hearing, and low vision aids
  • specialist beds, chair and stairlifts, rise and recline chairs and other lifting equipment and sanitary devices
  • goods that have been designed solely for disabled people
  • computer equipment
  • emergency alarm call systems
  • boats
  • parts and accessories


You can hire or lease eligible goods VAT-free if you’re disabled. Your retailer or other supplier is responsible for checking if the goods are eligible to sell VAT-free.

Medical and surgical appliances

You’ll not have to pay VAT when you buy medical or surgical appliances that are designed solely for the relief of a severe abnormality or severe injury such as amputation, rheumatoid arthritis, learning difficulties or blindness.

Appliances that can be bought VAT-free include:

  • invalid wheelchairs
  • certain types of mobility scooters
  • leg braces
  • neck collars
  • oxygen concentrators
  • specialist clothing
  • specialist footwear
  • wigs

Items that you cannot buy VAT-free include bandages, plasters or other wound dressings and dentures (unless you buy them from a dentist or other dental care professional).

For full information, please visit: www.gov.uk

If you liked my blog, 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.

Empty wheelchair space on a public bus

Disabled Passengers Still Fighting For Rights On Busses!

Disabled Passengers Still Fighting For Rights On Busses! – Even after a landmark court case win, disabled people are still fighting for the wheelchair space WE fought to have implemented on buses!! Parents, shoppers are still refusing to make space for wheelchair users when the space is required.

Court Case

In February 2012, Doug Paulley, a wheelchair user, tried to board a FirstGroup bus from Wetherby to Leeds. The wheelchair space was being used by a mother with a pushchair and a sleeping child. She refused the driver’s request to move or fold the pushchair and so the driver told Mr Paulley he could not board the bus.

Mr Paulley successfully sued FirstGroup at Leeds County Court for unlawful discrimination against him due to his disability, but this was later overturned on appeal. The case was then heard by the Supreme Court, which has given its final verdict today. The Commission has supported Mr Paulley at the Court of Appeal, and at the Supreme Court.

David Isaac added:

“Public transport is essential for disabled people to live independently, yet bus companies have not made it easy for this to happen. This is a victory for disabled people’s rights. The success of this case means bus companies will have to end ‘first come, first served’ polices, increasing peace of mind for disabled people.

“This has been about correcting a confusing policy which has caused untold problems for disabled people.

“For years, wheelchair users have been deterred from using vital public transport links because they could not be sure they will be able to get on. Today’s judgment will make that easier.” – Source: EHRC – David Isaac said Today’s judgment will make that easier……How? The law is still not specific enough about the wheelchair space! It should be made a law that buggies can use the space but when needed by a wheelchair user, they MUST move or fold down their buggy and if they refuse, they vacate the bus and wait for the next one. I mean, parents don’t mind that happening to us at present, so I say equality is the way the go!! Let them know what it’s like to sit in the pouring rain on a freezing cold winters day being refused access to bus after bus because parents don’t want to move their buggies. Now before I’m lynched, I know full well that there are many parents only too happy to move, I thank each and every one of you for this. It is the ignorant, self-important ones I’m on about. They just turn their heads and completely ignore everyone!!

The signs on the bus say:
“Priority wheelchair area. – This space is reserved for a wheelchair. – The wheelchair must be placed facing forward resting against the support or backrest with the brakes on. – Please give up this space for a wheelchair user.

Baby Buggies – Buggies can use this area if it is not needed by a wheelchair user. – Please move out of the wheelchair priority area if necessary. – Buggies may need to be folded a busy times.

Wheelchair space sign on bus

Ignorance

So what part of PRIORITY WHEELCHAIR AREA. – This space is RESERVED. – Please give up this space for a wheelchair user. – Buggies can use this area IF IT IS NOT needed by a wheelchair user are people not understanding?? The sign seems very cut and dry to me!!

If you went to a restaurant and sat at a table marked “Reserved”. You would be moved by a member of staff, yes? So why can’t bus drivers/companies make buggies move from this “Reserved” area?? It really isn’t rocket science!!

TFL say: Buggy users and other passengers may use the wheelchair space. However, if a wheelchair user wants to board the bus, other passengers and buggy users will be asked to vacate the space or fold their buggies.

On many buses, the space is big enough for the wheelchair and buggy to share. But, the wheelchair user does take priority and must be correctly positioned in order to travel safely. In some circumstances, buggy users may be asked to fold their buggies and wherever possible fold their pram.

Yeah right!!!

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