disability blogger

Female wheelchair user sitting holding a sanitiser bottle on a cruise ship

Cruising Clean: Your Ultimate Guide to Shipboard Hygiene

Cruising Clean: Your Ultimate Guide to Shipboard Hygiene – The holiday season is upon us…Yayyy. We are talking about our holidays, where we are going or where we have booked to go. I’ve noticed cruising is a popular holiday this year and many people are discussing how best to keep safe (hygiene-wise) while on board a cruise ship.

Being in an environment like a cruise ship, ensuring health and hygiene remain intact is crucial for many disabled people and people with health issues. It’s a vital part of many of our daily lives. I share some insights and practical tips on how to stay healthy and hygienic while cruising the open seas.

Why Is Hygiene Important?

Good personal hygiene is vital because it helps stop you from getting sick. It also helps prevent you from spreading germs and infectious diseases. Poor hygiene can cause people with different disabilities/health issues to become susceptible to infections, skin issues, and other health complications.  People who are immunocompromised are more vulnerable to infections, and illnesses. Even minor pathogens that might be harmless to others can pose severe health risks.

This becomes just as important for people who are going through certain health treatments like those being treated for cancer. Cancer treatments such as chemotherapy and radiation therapy often weaken the immune system, making patients more susceptible to infections and other complications.

Germs can be transferred in many ways, here are a few:

  • Touching other people
  • Getting faeces (poo) or other body fluids on your hands
  • Handling contaminated food
  • Coming into contact with dirty surfaces or objects

Poor personal hygiene can cause many different conditions like:

  • COVID 19and other infectious diseases
  • Diarrhoea, especially Gastroenteritis
  • Respiratory infections, including colds and flu
  • Scabies
  • Athlete’s foot

One way to have good hygiene is to wash your hands regularly, especially after going to the toilet and in other situations:

When should I wash my hands?

Man washing hands over a sink

  • When they are obviously dirty
  • After touching rubbish, dirty surfaces or objects
  • Before and after preparing or eating food
  • After blowing your nose
  • After handling pets or animals
  • After changing a baby’s nappy
  • Before and after visiting someone who is sick
  • After cleaning up vomit or body fluids
  • Before and after treating cuts or wounds

I’m sure we are all familiar with how to wash our hands after the many advertisements on this during Covid, but just to make sure:

How do I wash my hands?
  • Wet your hands with clean water.
  • Apply enough soap to cover all surfaces of your hands.
  • Rub your hands together for at least 20 seconds.
  • Clean between your fingers and the backs of your hands.
  • Clean dirty fingernails with a nail brush.
  • Rinse both sides of your hands with clean water.
  • Dry off your hands with a clean towel.
  • If you’re in a public bathroom, use a paper towel to turn off the tap.

If you’re unable to get to a sink or soap and water isn’t available, you can use hand sanitiser. Just remember, your hand sanitiser should contain at least 60% alcohol. Rub the sanitiser over your palms, the backs of your hands and in between your fingers. Keep rubbing until it is dry.

Ship Hygiene

With cruise ships getting bigger and bigger, passenger numbers are rising too. I’m off on a cruise later this year and the ship I’m sailing on has up to 3,200 passengers alone, this does not include the amount of staff on this ship. This means you will mingle with many other people while aboard the ship. So hygiene is extremely important.

Your Cabin
Cruise ship cabin interior

I’m not saying your cabin is dirty, they of course are cleaned before you arrive. However, with the amount of cabins that the staff have to clean, things can get missed.

  • Antibacterial wipes are great for wiping down surfaces, sinks, shower and toilet seats.
  • I normally take my own hangers, that way I don’t have to wipe the ones supplied. Plus you’re never supplied with enough anyway.
  • The remote control to the TV, a big hoarder of germs. This will definitely need wiping down.
Around the Ship
  • Tissues are great for when using door handles, stairway handrails and lift buttons around the ship as these do see a lot of traffic.
  • Casino – Do you like to have a little flutter? If so, be sure to take antibacterial wipes with you to use on the slot machine handles/buttons. Obviously, you can’t wipe down every single casino chip you may handle, so be sure to have either hand sanitiser with you or when you have left the casino wash your hands thoroughly.
  • The pools – Loungers/chairs may not be as clean as you may think, you can either have a really big bath towel or give them a wipe down. Again, be sure to wash your hands if visiting food areas when moving from the pool area.
  • Toilets – If you can, use your cabin toilet.
  • Masks – If you do come down with a cold or feel sneezy, wear a mask in public spaces and help protect others.

Top tip: Be the first ones to use the hot tub/pools first, after they have been cleaned.

Eating On The Ship

Many of the restaurants have waiter service. However, there are some self-service, buffet-style restaurants. In these restaurants, is where hygiene would play a bigger role. For example:

  • Wash hands before entering any eating area
  • In the buffet-style eateries, use a tissue when using the tongs to pick up the food. Or let the dining staff serve you if available.
  • Wipe down your table with antibacterial wipes
  • Water – Drink plenty of water, especially in hot places.

Top tip: When travelling abroad, be sure to check if the water is safe to drink as in some countries it’s not advisable.

Cruising is my favourite way to holiday, check out my Cruising as a wheelchair user blog and my Cruising tips for accessibility As a full-time wheelchair user, I find it the most stress free way to holiday. I highly recommend doing a cruise if you can.

I hope you have found these tips helpful and if you are cruising this year, happy and safe travels.

Links

P&O Cruises

Fred Olsen Cruise Lines

Royal Caribbean

The Sovereign Cruise Club

Iceland Pro Cruises

Princess

If you like my blogs and 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

6-in-1 kitchen tool open sesame for opening jars, bottles etc

How Easy Is The Open Sesame 6-in-1 Tool To Use – My Review

How Easy Is The Open Sesame 6-in-1 Tool To Use – My Review – I bought this tool to help me be more independent around the kitchen. You’re told in the opening image of this product: 6-in-1 tool, Opens almost anything, No effort required and guaranteed to work every time!

It goes on to say: This all-in-one quality tool makes opening jars, bottles, lids, packets, bags, seals and tops practically effortless! These are massive claims for such a small product. But……Can it do what Must Have Ideas say it can?

The Sales Pitch

The Open Sesame 6-in-1 Tool is a multipurpose tool advertised to make everyday tasks easier for people with disabilities, especially those with limited hand dexterity. It is designed to help open bottles, jars, cans, and doors, as well as pulling tabs open. The tool is compact and lightweight, making it easy to carry around and use.

How Easy Is The Open Sesame 6-in-1 Tool To Use - My Review - 5 images in one showing the tasks this tool can achieve

Source: Must Have Ideas

My Experience

When I opened up the package, it looked a good size and it came with instructions. I chose the blue colour and it cost me £9.99 (This included their 40% off offer) although I’ve never seen this product at full price (as I had my eye on this for a while) plus P&P.

I have tried opening all of the things MHI have claimed this tool can open:

  • Tin cans (ring pull) – Opened these with ease, as long as the tin is sat on a firm surface
  • Bags (like frozen chips) – Unable to do this due to my dexterity and grip
  • Milk cartons (2-pint carton) – Unable to do this due to my dexterity and grip (couldn’t open the plastic screw lid to get to the tab)
  • Jars – Impossible due to my dexterity and grip – The tool was also too big for me to be able to try and get a better grip
  • Bottles – Again impossible due to my dexterity and grip – The tool is too big for me to be able to get a good grip
  • Bottle tops – Able to do this

What I can’t understand is the fact that Must Have Ideas claim:

Open Sesame makes a really thoughtful gift for anyone with dexterity issues.

I have dexterity issues and I couldn’t use this tool to its full extent, making their “Guaranteed to work every time” claim to be false. Maybe even verging on a complete lie to make sales! Needless to say, I felt really let down and disappointed. So I contacted their customer service team (CS).

Customer Service

I emailed them with my concerns over their wording and how I felt it was very misleading and maybe at worst, false advertising.

The following day, I received an auto email informing me I have received a refund. No further contact from MHI at this point. Then this:

Here’s hoping their marketing team do the right thing and makes the wording for this product more realistic and true. I bought this product based on their advert, I feel let down and misled! It’s NOT guaranteed to work every time, as advertised!

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

Links

Must Have Ideas
Open Sesame

Side view of mid wheel on Q300 electric wheelchair

Quickie Q300 M Mini: An In-Depth Review for Improved Accessibility

Quickie Q300 M Mini: An In-Depth Review for Improved Accessibility – My previous EW (electric wheelchair) Spectra XTR2 was hitting 5 years old (average lifespan of a wheelchair). I wanted to know what was available on the market, so I went to a showroom to take a look. I thought if the price was right, I might buy my own chair. This way, I could have a chair that met my needs better and not have to use the NHS wheelchair service.

I fell in love with the Quickie Q600 but at the cost of over £9,000 inc the adaptions I needed. It was completely out of my price range. I came home very disappointed.

A few weeks later, I received a letter from my NHS wheelchair service. I was due for a wheelchair review. I know how strapped the NHS is, so didn’t dare to think I would ever be offered anything as grand as the Q600. I’m grateful for any chair provided to me as my independence depends on it.

My appointment arrived and I was shocked as I was actually offered the Sunrise Quickie Q300 M Mini. This is in the same range as the one I tried in the showroom (Q600), making these chairs identical. The only difference is the max speed. The NHS is only allowed to provide electric wheelchairs with a maximum speed of 4mph, the chair at the showroom had a max speed of 8mph (also available at 6mph).

Sunrise Quickie Q300 M Mini

The wheelchair’s width is smaller than my previous chair. It feels very compact. You can customise the chair with coloured facias that cover the batteries, rims that sit on the mid wheels and covers for the arms that hold the castor wheels. There are many colours and designs to choose from.

There is a mountain of options available for this chair. From:

  • Backrest
  • Footplates
  • Armrests
  • Cushions
  • Tilt
  • Recline
  • Swing Away Joysticks
  • Colours
  • Elevated footplates
  • Speed
  • Headrests
  • Seat Riser
  • Controllers
  • Seating Options

The list is rather impressive don’t you think? If purchasing one of these privately, please visit an authorised dealer to ensure you are fitted and kitted out with the proper adjustments and adaptions. Also, make sure you have a home demonstration. Some dealers charge quite a lot for this so do your research. The showroom I visited wanted £250 for a home demonstration. At the end of the day though, you don’t want to spend thousands of pounds on a wheelchair you can’t manoeuvre around your home.

How Functional Is The Sunrise Quickie Q300 M Mini Electric Wheelchair? - Side view of the Q300 M Mini electric wheelchair

The size of this chair is amazing, except for one thing. Because this can literally turn on the spot & the back is shaped differently from my previous chair, (I’m assuming because I have the Sedeo backrest), I keep hitting things behind me.

As the backrest is capable of adjusting along the seat frame. I found mine was set far too forward, making me like it was pushing me off my seat. I got hubby to reposition it for me and he moved it back about an inch which has made a huge difference for me but of course, this now means I have more behind me to be more aware of.

Specifications

Specifications for the Quickie Q300 M Mini
Source: Sunrise Medical – Bottom of the page.

Seating

Sunrise say:

Instead of a solid base, the Flexi-Back wraps around and contours to the shape of your spine, providing complete contact, comfort and stability. Similarly, the integrated laterals ‘hug’ your sides, forcing the foam to mould to your anotomical curves. The laterals are independently adjustable to help atabilise and align your trunk too. It’s such an adjustable, supportive and immersive back that even those with moderate-to-severe kyphotic postures or spinal scoliosis can sit much more upright without any sacrifice to comfort!

I’m afraid I have to disagree with this statement. I feel I have got my seating position the best I’m going to get it. (Unless I’m missing something). I still can’t get complete contact, comfort and stability. Believe me, when I say, I have had my backrest up/down, forward/back, tension straps loosened and tightened, wings pushed in/out and nothing is coming close to comfort. I’ve even changed my seat cushion to no avail.

I sit with my seat tilted backwards to keep me in my seat and push me back against my backrest. If I’m sitting watching the TV, yes, I can get good contact with my backrest. When sitting anywhere else, I don’t have this comfort. I still feel my limber area is not getting the support needed.

The video on Sunrise’s website regarding the backrest shows that the side wings can be moved up and down along each side. I am yet to work out how this is done. I can’t comment on seating cushions as my chair wasn’t ordered with a seat cushion as I have two of my own seat cushions.

I’ve got elevated footplates. I was quite taken aback by how bulky and heavy they are. They seem to stick up to a point higher than my knees. (Seen in the drop kerb video below). They have padding on the inside by my knees but the padding is hard so they cause more problems than solve!

Adjustments

At the time of writing this, I have moved my armrest up/down, I’ve tried two different cushions, reclined my backrest into many different positions, tightened/loosened the tension straps inside my backrest and even moved the backrest frame out further to stop me from feeling like I’m being pushed out of my seat. I still feel I’m not as comfortable as I should/could be!

I like to have my backrest in a very upright position. My back hurts if I don’t. Unsure if it’s the type of backrest I have (my previous one had no wings, just straight with some tension straps) but I just can’t seem to feel comfortable.

Smooth Ride

The most significant difference for me is that this is a mid-wheel drive chair, whereas my last chair was a rear-wheel drive. Controlling this chair is very different from my previous one. There are 3 type of wheel drives:

How Functional Is The Sunrise Quickie Q300 M Mini Electric Wheelchair? - What's the difference between different wheel drives.
For a full description, visit: Permobil

This is probably the smoothest ride I’ve ever had in any of my electric wheelchairs and this includes the Storm 3 I had many years ago. Navigating small kerbs is surprisingly smooth and I stress small kerbs. (It’s always sensible to mount any kerb face-on, not at a sidewards position).

Sunrise says:

Our PATENTED all-wheel independent suspension ensures all six wheels remain on the ground whilst climbing and transitioning obstacles. Any shocks or bumps are absorbed by the wheel‘s suspension, providing a soft and smooth ride.

Source: Sunrise Medical

This time, I agree. The suspension is very good. I have, however, found one obstacle that took me by surprise. My parent’s house has a ramp up to their front door (the image right is an example of their front door). The ramp sits under the white step meaning you have a very small step over the threshold, then you step down into their hallway.

When I popped around there to show off my new chair, my chair bounced around unevenly going over this threshold and I nearly cracked the PVC door frame, even though I was driving straight. Yes, I was going very slow too. It is extremely difficult to remember that the main drive wheel is directly under me and not behind me.

Pulling away has what I describe as a slight delay. You push the control knob and it takes (what feels like ages) for the chair to start moving. I notice this most when waiting to cross the road. I assume this is to prevent the chair from jerking when moving off.

To The Test

I have taken a full 4.5-mile round trip to put my chair to the test and learn its & my capabilities. It coped much better than I expected. Although I think I was who failed the test. I was very nervous going up and down hills and some kerbs, especially when at an awkward slant. When I arrived home, I had not lost one light on my battery indicator, which did surprise me.

I took some video footage (below) to show how the chair’s suspension is very good. You see me going over cobbles and believe me, it looks bumpier than it feels. It makes for a very smooth ride. Another note to mention is when you’re riding along the pavement over dropped kerbs, the chair keeps you in a straight line. It doesn’t pull you to the side as other chairs can.

Another video shows how manoeuvrable and compact this chair is as I used a shop’s wheelchair lift to go upstairs. You can see that the turning circle capabilities on this chair were a major factor in being able to use this lift, especially when I got to the top as the door was now to the side of me.

The first cobble test, found this to be very smooth indeed.
The second cobble test was a rougher set of cobbles. A little more bumpy but still a lot smoother than some other chairs.
I was amazed at how I kept in a straight line going over the drop kerbs. My other chair would almost have me in the road.
Again, the tight space wasn’t an issue for the Q300.

Conclusion

If you’re looking to purchase this chair privately, do visit a professional supplier that will take your measurements and give you honest advice as to what you may need. There is so much that can be altered/changed on this chair it is a bit of a minefield. Don’t forget that home demonstration, especially if you have adaptions in your home for your chair like a through-floor lift.

I’ve given this chair a 3/5 for a couple of reasons (I so wanted to give this 5/5):

  • Footplates are so bulky and heavy. I can’t actually take them on/off by myself (I have actually seen smaller less bulky elevated footplates on other chairs)
  • I still can’t get myself into a comfortable position even though Sunrise claim this is almost impossible
  • The armrests can not go any higher than I’ve got them already. This is important to me to keep me in an upright position. This also causes me back pain. – I’m looking into if I can modify my right one to make it higher.

Outside of the above, this is a very neat chair.

  • Its suspension is extremely good
  • Turning circle absolutely amazing
  • Style is great as you have different coloured shrouds and wheel inserts
  • The controller (NHS version) is your basic controller
  • Many ways in which you can modify this chair to meet your needs

Am I happy with this chair? You bet I am, fingers crossed it lasts me and that I don’t have any issues in the future.

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

Links

Sunrise Medical
Mobility For You

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