Naidex: The biggest disability products event in the UK goes virtual

Naidex is the UK’s biggest disability products exhibition. On the 18th and 19th March 2021, the exhibition went virtual. The physical event was cancelled twice due to the COVID-19 pandemic. It is normally held every year in Birmingham at the NEC. The venue has great access for people of all disabilities. There is flat access throughout, hearing loops, assistance dogs are allowed and there are accessible toilets, including Changing Places facilities. The complex is huge though so it is very easy to get lost, even though I go every year!

Putting my woeful sense of direction aside, it is a great event. People with disabilities are in the majority instead of the minority. Almost any disability product you can think of, and a few you can’t are displayed! I was very curious how this would be adapted for the virtual world.

NEC-Website

Registering for Naidex

Tickets to Naidex are free. Booking tickets is as simple as going online and filling in the registration form. This year, a username and password were emailed to me. In previous years tickets, accompanied by an event guide were delivered to my door through the post. A week before the event I received an email. This email contained teasers of disability products I could expect to see. Upcoming speaker seminars were mentioned as well. Companies selling disability aids of all types were showcasing their products: beds, wheelchairs, sensory equipment to name but a few. There was also a handy login link included.

Naidex-Registration-page

Accessing the event

Logging in was simple thanks to the link I was sent.

A top tip: copy and paste the login credentials to avoid mistakes.

The screenshot below shows the login screen. There is an icon that looks like a person in the top right corner. This icon opens the accessibility features, which I’ll go through in detail later. Next to that are text resize buttons and in the lower right corner is a chat icon.

Login screen

Having logged in there was a menu on the left-hand side where I could click on ‘sessions,’ ‘speakers’ or choose to view the ‘interactive product directory.’ There were thirty-four speakers and one hundred and nineteen companies taking part across the two days. I lost count of the number of sessions as many were duplicated for different access needs. A session was where a company had written or pre-recorded a video about themselves or its products. This could be a bit boggling as everything was in list view with a scroll bar to view more making it difficult to know what to look at first as I had to scroll to see what was available.

Accessibility options

To access the many accessibility options available on the Naidex portal involved clicking the icon in the top right-hand corner that looks like a person/stickman. This brought up a menu with more accessibility options than I’ve seen before! An event showcasing disability products should be accessible but it’s still impressive.

The screenshot on the left shows the top of the accessibility adjustments and has options to reset settings, view the access statement or hide the accessibility interface altogether. Below these options are access profiles for differing needs: seizure safe profile, vision-impaired profile, cognitive disability profile and ADHD friendly profile. The accessibility options are scrollable so I had to take six screenshots to show all the options. The right screenshot shows the last two access profiles available which are blind users (screen reader) and keyboard navigation. Underneath this are the content adjustments: content scaling, readable font, highlight titles, highlight links and text magnifier.

The above two screenshots show the complete options for content adjustments, which in addition to those mentioned in the paragraph above, are: adjust font sizing, align centre, adjust line-height, align left, adjust letter spacing and align right. In the right screenshot, the first three options for colour adjustments are shown: dark contrast, light contrast, and monochrome.

These last two screenshots above show all of the colour adjustment options on the left and the orientation adjustments on the right.

The colour adjustments are: dark contrast, light contrast, monochrome, high saturation, high contrast, low saturation, adjust text colours, adjust title colours and adjust background colours.

Orientation adjustments

The orientation adjustments are as follows: mute sounds, hide images, read mode, reading guide, stop animations, reading mask, highlight hover, highlight focus, big black cursor and big white cursor. There is also a ‘useful links’ option in the centre of these adjustments to give the user the option to place a useful link in a position on the screen at all times. For example a link to the homepage.

The disability products

Everything from smart home products, car converters, specialist beds, mobility battery specialists, occupational therapists, sensory specialists, wheelchair manufacturers and solicitors were present at Naidex.

Searching for a specific product

This event can therefore be very useful if you are searching for a particular item. A couple of years ago my main purpose for attending Naidex was to research WAV’s (wheelchair accessible vehicles) as I needed to choose a new car. This year I just wanted to see what new disability products and services were available.

Disability products wishlist

I was particularly interested in the smart home gadgets as I’m always on the lookout for a gadget to make my life easier but as I already have smart heating and lighting, most things weren’t of interest. I will be keeping an eye on how smart locks develop though. As I have someone who can open my front door for me it seems overkill to splurge just yet.

Smart-Lock

Similarly, if I had money to burn I would buy a turning bed to help me transfer in and out of bed easier. These beds not only move how my existing profiling bed does but the mattress also turns ninety degrees and puts you in a sitting position on the edge of the bed. This would make it easier for my PA’s/family members to assist me to transfer and get me dressed and undressed but as I require help anyway and I haven’t got a money tree, this will have to stay a pipe dream.

ChairBed

Interesting disability product ideas to keep an eye on

Another interesting piece of equipment I saw is something called a Showerbuddy. This shower chair comes with its own transferring platform which means that a normal shower cubicle, (those with a step/lip,) can be used. It’s aimed at older people and marketed as an alternative solution to getting a bathroom adapted. The chair is slid into the shower off of its raised base on wheels.

Showerbuddy

Chronus Robotics

Chronus Robotics is a robot wheelchair. It’s compact, slim agile and absolutely no good for me as I have little to no trunk control. I remember being asked years ago if I wanted to try the Segway chairs and having to painstakingly explain that as the chairs were controlled by body movement I’d crash in roughly three seconds! The chair is also able to go up and down so that you can reach things. If you have upper body control I imagine they are great! I wouldn’t want to guess the price though! I’m hopeful that soon one or more of these robotics companies will design a chair that can be controlled more like a conventional power chair.

Seminars

My favourite seminars were:

  • Making a Successful Application for a Disabled Facilities Grant by Paul Smith.

  • Take the chance out of going out with AccessAble’s Detailed Access Guides by AccessAble.
  • How technology can be used to revolutionise the lives of disabled people Shani Dhanda.

There were plenty of others to choose from, on a range of different topics.

Conclusion

Naidex this year has been more accessible than ever! This is due to the fact that the disability products and advice seminars were all available online. I really enjoyed the virtual version. I’m hopeful that the physical show will go ahead in September but I hope that content will still be available online. This would make Naidex more accessible and inclusive than it has been before. I’m definitely getting tickets for September.

The Vaccination Process | Booking, Safety and First-hand experience

I’m back with a guide to the vaccination process! Thank you all for being so patient. Please check out the rest of my posts. The content is the same but hopefully, they are now easier to read and more useful information is provided. I have now added alt text and descriptions of images and videos properly. I apologise to my visually impaired readers for not doing this before. Please contact me if any part of this blog is inaccessible to you, whatever your need or disability.

I received my vaccination on 20/02/2021. While a big part of me is sick of talking about COVID-19 I hope it will help tackle any uncertainty or fear surrounding obtaining your vaccination. It is subjective, as was my post on my experience of the virus, so the opinions expressed are entirely my own and should not replace medical advice.

Booking your vaccination

Many people with disabilities have already had the vaccine as many of us are either in the extremely vulnerable category or category six. I’m category six as I have an underlying disability but have no health issues from that. In England the NHS booking service now says you can book if:

  • you are aged 50 or over
  • are at high risk from coronavirus (clinically extremely vulnerable)
  • work as an eligible frontline health or social care worker
  • your condition means you are clinically vulnerable
  • you have a learning disability
  • someone you care for is at high risk from coronavirus

Physical disabilities aren’t mentioned but don’t let this put you off. Clicking the booking service link above will take you to the NHS website, where you will be asked to enter your date of birth and your hospital number. The system then determines whether or not you are eligible. If you are eligible to book your vaccination you will be taken to a page where you can select a place, date and time to receive it. If you don’t know your hospital number, you will be asked to provide your basic information in order to continue.

Vaccine booking screen requesting hospital number

When trying to book my vaccine in this way the system told me I wasn’t eligible. So it’s worth trying as you won’t be booked in unless you meet the criteria. You’ve nothing to lose!Several people I know and people I don’t have got appointments this way before official invitations arrived. I also contacted my GP as I have to recruit carers/PA’s and felt at risk with the prospect of having an increased number of people in the house, without the protection of immunisation. Understanding my situation, my GP agreed I should be moved up the list but I still had a six-week wait. It is always worth asking!

Safely attending your vaccination appointment

Unless you are exempt from wearing one for medical reasons you must wear a mask when attending your appointment. It is understandable that you may feel nervous going out, especially if you’ve been shielding and this is your first outing in some time. Allow your self plenty of time to get to your appointment, the last thing you want to do is rush.

Think about how you will get to your appointment. Although bus services are still running many people, myself included, find them inaccessible. I’m lucky as my GP surgery is only a fifteen-minute walk/wheel from my house. The taxi firm,Uber, is offering a £15 discount on trips to or from major vaccination centres around the UK and their drivers follow COVID-19 safety measures. In some cities, they offer wheelchair accessible vehicles. Carry out a local internet search for transport services in your area which also may be able to help.

Getting vaccinated

On the morning of my vaccine appointment, I got up and dressed in loose clothing. The needle is inserted into the upper arm muscle of whichever arm you choose. Wearing a jumper with sleeves that would roll up high enough saved me from getting undressed at the doctor’s.

My Mom accompanied me as I need someone with me when needles are involved. This is because my startle reflex could cause my arm to move when the vaccine was being administered. Cerebral Palsy startle reflex means that I jump at loud noises or sudden sensations. Someone holding my arm still is just for safety.

Arriving for my vaccination

We planned on walking but as it was raining heavily my Dad took us in the car. I’m very lucky to have them available to assist me. When we got to the practice there was a big queue as someone had been taken ill earlier that day so COVID-19 vaccine patients were backed up. This prolonged the appointment to one hour and 40 minutes! I was hoping to be in/out within half an hour!

Having joined the queue outside Mom helped me put my mask on and we slowly inched towards the front. When we made it inside the tent staff were using to check people’s details I was told that as I’m a wheelchair user I could’ve gone straight inside and stayed warm. I am affected if I get too cold but only in that it can take a long time for me to get warm again. If you have difficulty queuing for whatever reason it’s worth asking if there are any adjustments that can be made for you.

I handed in the form with my details on and we were shown into the surgery and into one of the consulting rooms. The form asked for my name, address, date of birth and questions about how I’d been feeling the last ten days.

Receiving the vaccine

Once inside the consultation room, I was informed that I was going to receive the AstraZeneca variant. I was a bit disappointed. I’d hoped to receive the Pfizer vaccine instead as I’d heard it was more effective and had fewer side effects. There is no proof of this. Some days later a friend told me they had heard the Pfizer was the worst for side effects, guess things affect people differently.

I was asked which arm I wanted the vaccine in and I chose my left as I drive my chair with my right hand. The needle was in/out before I knew it and it didn’t feel any worse than a scratch. The nurse then told me that I may have flu-like symptoms and a sore arm which should last no more than a week. I was then told I could leave straight away and I didn’t have to wait for fifteen minutes. I’m not sure why but I was asked if I drove, (I don’t,) so maybe that is why I didn’t have to wait. We were in the room for approximately six minutes.

Vaccination card

I haven’t been given my second date yet. My GP practice will send me a link to book my appointment sometime in the middle of May.

Side effects

I had my vaccine at 11.10 am and didn’t start feeling ill till about 8 pm that evening. I then experienced a minor version of the joint pain I had when ill with the virus, together with shivering for a couple of days. The worst thing was the injection site became swollen and sore for roughly five days. I was thinking about ringing my doctor when suddenly the swelling went down.

Conclusion

Even though I was uncomfortable these side effects were nothing compared to being ill with COVID-19. Many people experience far fewer symptoms than me. I would encourage anyone and everyone to get vaccinated. The symptoms far outweigh the benefits both to myself and to society. My only caution. Check with your doctor if you have any allergies, are pregnant, breastfeeding or have a compromised immune system. These circumstances may affect when you can be vaccinated and which variant you are given as there are different ingredients in each.

I hope this post is reassuring. If you would like to ask me anything about the above, please do. My next post will be a review of the recent Naidex virtual event.

Happy New Lockdown

Happy New Lockdown! This was how my brother greeted me on his first day back at work after the Christmas Holidays and I found it so equally amusing and depressing that I just had to use it for this post. I hope everyone had the best Christmas they could and that New Year was a happy occasion for all my readers.

New years eve Fireworks
New Year’s Eve Fireworks

Recruitment

So new year same…activities! Literally! Last year I wrote about how I had lost a PA due to health problems and this year, thanks to COVID-19 I will be recruiting again. I have no idea what this will look like during lockdown but as my Mom helpfully pointed out, I have to find people to interview first! If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. If any of you have any tips on how to make the recruiting process less stressful please let me know. I’m thinking of starting a support group for people who have lost carers/PA’s this year.

hands clasping
Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty negative about the recruitment process and Social Care in general, I’m determined that this year is the year that I get my ducks in a row! (Runaway Bride reference.) I’ve contacted The Disability Union, to assist me with getting my care package. I’ve signed up for the Lifebook Course to try and get a handle on how I want to actually live as all the assessments and stress has made it hard to see the wood for the trees. It may help or it may be new-age hype but I’m hoping for the latter. I’ll also be more active with Disability Horizons this year, writing and editing content. Check out my piece on free online courses available to stave off boredom and improve skills and knowledge during this latest lockdown.

I don’t know whether this new year equals a new me but I’m optimistic that it’s a year for change. What are your plans for this year? How are you feeling about the lockdown and the fact that there are now vaccines available?

I’d be interested to hear from you if you’ve had the COVID vaccine already. My disability whilst sometimes frustrating thankfully does not affect my health so I’m pretty far down on the list. A fact that I’m both incredibly grateful for and at the same time, I’m impatient for the world to be vaccinated so we can get back to whatever normal there is for us all. Who’s with me!?

Screenshot zoom Dance

International Inclusion Day For People with Disabilities

Yesterday was International Inclusion Day For People with Disabilities. I hope everyone has had a great day. Apart from more disability-related posts on social media today has been the same as many others for me. Awareness of the need for inclusion and its benefits is growing. This is a good thing for breaking down barriers that disabled people experience. Barriers still exist.

Inclusive Dance World Vision Festival

On Tuesday, 1st December 2020, my dance group were part of an inclusive dance festival in Moscow. Britain, along with many other countries celebrated the inclusivity of dance. The festival showed how everyone can be included and have fun. The Inclusive Dance World Vision festival apparently happens every year with amazing dancers travelling to Moscow to compete. Due to Covid-19, videos were submitted this year and the whole event was live-streamed on the day.

Inclusion in dance

I did plan on posting our competition entry but that will be revealed at our Freewheelin’ Christmas show on December 18th. Instead here is our first competition dance from a couple of years ago.

Inclusion for everyone

The disabled community continues to advise and raise awareness so access and acceptance will continue to increase. Everyone should be included no matter what their disability, race or religion. The barriers I face as a disabled person are mostly caused by society. Days like the International Day For People With Disabilities, Purple Tuesday and the Inclusive Dance World Vision festival show that attitudes towards disability are changing. Change is happening, this is proven in the thought that now goes into designing buildings so that they are inclusive.

Interview with Sam from PHB Hunters

Sam-Stickland

About Sam

Sam resides in North Wales and lives with a disability called Limb Girdle 2e Muscular Dystrophy which is a progressive condition, meaning her needs have increased/grown more complex over time. Sam is now forty and has been employing her own PA’s since she was twenty.

To begin with, she did this with the help of The Independent Living Fund, a benefit that unfortunately no longer exists. When the Independent Living Fund was scraped her local authority funded her entire care package, continuing to provide funds through her Direct Payment.

Agency workers

This worked well until Sam’s Social Worker persuaded her to use an agency to carry out her care rather than employ PA’s herself. At this point, her Social Worker applied for her to have half of her 24-hour care package funded by CHC. Sam agreed due to pressure, lack of support and her continued struggle to have a working contingency plan in place should any of her PA’s be unable to work. However, as soon as this decision was made Sam lost all autonomy and had very little or no say in how she lived her life.

Back with the Direct Payments Scheme

After a lot of battling with her local authority, Sam now employs PA’s once again through a Direct Payment, enabling her to live her life the way she wants to. She has this option as she is jointly funded by BOTH the local authority and CHC. This option is not available to those like Rhys who’s care isn’t jointly funded.

Sam campaigns with Rhys to try and ensure that all citizens in Wales, not least Rhys himself has the same freedom that she enjoys regardless of how they are funded. Below are the questions I sent to Sam after I saw their campaign on the BBC website and later on Facebook, Welsh PHB Hunters (Every human being has the right to be free.) The questions were sent before I knew she had won the right to have her Direct Payment again, which just goes to show you should always fight for your rights.

1. How long have you had your current care package?

I’d say from March, as I’ve been able to hire my own PAs since then, through a jointly funded package. However, I now believe I had a jointly funded package for almost 3 years, but I was falsely told by social services that it was CHC funded and therefore I was unable to use direct payments to employ my own staff. I now distrust my social worker and the people who are supposedly there to help us.

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

I no longer use a care agency, but can say that when I did they all said they were person-centred, but that only went so far, my views and opinions weren’t listened to when it really mattered, and they were just a business trying to fill their contract requirements any way they could.

3. Do you have any say in how your care calls are structured?

Yes, I have complete control now. I do the rotas, ok holiday, and I am in charge of all employment matters. Although I am checked in on a lot by nurses and social worker, (pre covid.)

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

This is a Rhys question but from my perspective. My social care team really wanted the monies to come from health to save them money, they did not support me at all, and it was the health side that agreed my needs weren’t nursing as the social care team were trying to suggest.

5. How did you meet Rhys?

I was talking with Rhys and we can’t remember exactly how we found each other! It was through our fight for care and somehow we started chatting over Facebook. Since then we have spoken every day and started a long-distance romance!

6. In August, you wrote a letter to the Welsh government. Why now?

I think we both wrote letters prior to this, mine began in February, but at that time I was unaware of Rhys’ campaign. Once I connected with Rhys, I upped the ante and began to fight for PHBs as well as for the framework on legislature changes for joint funding to be made clearer. We have since written to charities, disabled organisations, magazines, MP’s and AM’s. Basically, anyone who will listen and support us.

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

They generally are not cost-effective, but I believe that the social care team see them as an easy solution to them, less paperwork and less face to face work. They leave any issues to be dealt with by the agency involved, which leads to more problems for us. CHC funded care must currently use agencies in wales, hence the fight for PHBs, I believe this is to pass over any accountability to the agency instead of the NHS, and due to the work needed to change the current framework. It isn’t about what is best for us.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

It’s just not allowed because of the current CHC legislation. If you are jointly funded it is lawful, but it is not well known, as I found out during my fight. It needs to be clearer for users and the organisations involved.

9. How is a second lockdown affecting you?

The lockdown is hard, I miss seeing my family and my niece who’s grown so much since this all began. It obviously makes a long-distance relationship harder as we can’t travel as much. I had plans to travel this year! 😂 I worry about covid obviously but my PAs are all taking precautions to safeguard me and I appreciate that immensely. 2020 has been a hard year for everyone.

10. What does a typical day look like to you?

This is probably more Rhys, as I have a PA 24/7. I can get up at a time of my choosing; toilet, eat etc when I want. My only constraint is being in bed by midnight, as I have a sleeping night and PAs have to have 8 hrs sleep. Breaks for PAs are quite flexible depending on our plans for the day.

11. What do you do to relax?

Photoshop, and artwork. I can spend hours doing this on my computer, as it clears my mind. I love a bit of Netflix, music and days out with family or friends (pre covid). I try to study something new as often as I can, but Rhys’ campaign has kept me busy since August, so I’m only doing short courses at the moment.

12. Have you been given a reason why individual cases can’t be heard but group cases can?

I think this is just policy for the heads of departments, such as Vaughan Gething and Julie Morgan. We are encouraged to contact our local ministers.

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

We have had difficulties with this ourselves so I’m just going to use what we currently have.

The Welsh government are proposing Independent Users Trusts (IUTs). An Independent User Trust is described ‘as a commitment on the part of trustees to manage an agreed sum of NHS money (or other resources) in a way that puts the individual at the heart of decision-making and gives them choice and control in their life’. Confused? I know I am? I ask is this clear? Because we have struggled to get a clearer definition so bear with us a little.

IUTs are in fact one of the ‘methods’ that an individual can now use to manage a personal health budget when a direct payment is not possible, AS IN WALES Right? But we are not being given the option of utilising the other methods, just an IUT.

So it’s our understanding:

• You have a team of 6 trustees almost like a syndicate.

• You get to choose who those 6 people are “how generous”.

• You speak to them, and they then speak to the NHS.

• They make a decision for you over how your care is provided, “bearing in mind it’s your care”.

• And they control the purse. “So we never, in fact, see the money ourselves.”

So, they are making us answer to a group of individuals, which granted, we can choose, but they decide and then purchase that care for us!

Is this not completely obscuring the idea of independence?

We are accountable adults, who have self-control over our own life’s, and finances! So why are they suggesting we are incapable of taking care of our care finances? The notion is completely condescending! The only thing that makes us different from everyone else, is a physical disability?

In our eyes, this means that IUTs fail to put individuals at the heart of the decision-making process, and instead take away our choice and our control over our care. Which surely we deserve? It merely mimics the same system currently in place, just given a new name… In line with the Social Model of Disability, the Welsh Government says it is committed to disabled people fulfilling their potential and achieving their ambitions and dreams, by removing barriers that get in the way of such ambitions. The Welsh governments current IUT plans are building these barriers up, rather than demolishing them, are they not?

We truly can’t understand how our own Welsh government thought it was okay, to put people who needed 24-hour care in a situation, where they don’t have any choice in who provides their care for them.

My thanks to Sam for answering my questions.

Having had several written conversations over social media with her, I have to say I completely agree that the proposed solution, Independent Users Trust’s, (IUT’s) does not give disabled people the freedom and autonomy that they are requesting. I can’t understand why a Direct Payment is available in one instance and not another! Judging from the campaign, I’m not the only one.

If you want to find out more visit the Welsh PHB Hunters Facebook page. They welcome any support, wherever you live and are currently looking for people who have experienced agency care to participate in an article they are writing. If you’re interested send them a message here.

Stuck In A Rut!

I’m stuck in a rut and have been struggling with what to write for nearly three weeks. In short, I’m having a self-esteem crisis and a bit of writer’s block. The ideas are there I just haven’t been able to do much with no mobility aids. I hate feeling useless and thankfully, with the return of my chair last week I’m beginning to climb out of the rut my mind has dug for itself. It has got me thinking though about the pressure that is put upon us to be productive. This post would’ve probably been more topical on World Mental Health Day but better late than never!

Being productive improves my mood

I’m the type of person that’s happiest when I have things to do and I feel useful and I think most people are the same. I’d love to know what you do when you’re stuck in a rut, bogged down by monotony, what helps you breakthrough and feel more like you?

Wheel out of that rut!

The first thing I did when I got my wheelchair back was head out for a short walk/wheel around the streets close to my house…I’ve just read that back, maybe around the neighbourhood sounds better? Anyway, it helped. Being able to be somewhere, by myself, helped and that’s what I’d been missing for three months, alone time.

I realise this post is a bit rambling but I just wanted to share my thoughts here. Writing is cathartic for me.

Rhys update

I have heard from Rhys Bowler but he’s been busy writing a speech for the Disability Cross-Party group of The Senedd, (Welsh Government.) The meeting was a week ago so I’m hoping to find out how it went soon. In the meantime, I have sent Rhys and his friend Sam my interview questions and Sam has very kindly shared her story with me. I’ll post it here next week, giving her a chance to see my write up first.

Blog post requests?

Please get in touch with what you would like to read from me. Any and all questions are welcome. I’d love to write a series about how I’m travelling the world but unfortunately, that’s just a pipe dream at the moment, as it is for many others in this COVID-19 environment.

The importance of choice and control

Firstly, thank you to all my readers and followers who have read my blog so far. I’m sorry there have been no new posts for a while but the last month or so, since I posted has been very hectic. This post is about the steps I’m taking to try and gain more choice and control in my life.

Staff equals choice

I mentioned in a previous post that my PA’s were starting soon and that I would share details with you lovely readers about my journey. My two PA’s started the week of the 17th August 2020, both seem lovely and employing them is my first step back to choice and control since COVID-19. What I didn’t count on is that the agency that I’d contracted back in March 2020 to assist me would also want to start on the 17th of August! I employed the agency while I was waiting for the paperwork on my PA’s to be processed and completed. The DBS checks took forever even before COVID-19!

People are like buses!

The week starting 17th August 2020, I had seven different people come to my house! Worse they were invited! I was putting myself through meeting these people in the hope that I’d gain freedom and control in the long run. There’s a well-known expression about buses and them all coming along at once. After eight months of having no formal care suddenly people were everywhere!

Buses

This is very positive in one way as it gets things moving. It was obvious to me at age eleven and is now even more obvious at thirty-four that I can’t rely on my family forever. They deserve choice and control as well! I’ve moved out of my family home three times in my life so far but it has never stuck permanently because of my lack of choice, control and the barriers in my way!

Money facilitates choice and control

I’m still fighting for a bigger direct payments budget. Having the money to pay people for what I actually need would go a long way to removing barriers and afford me more choice. Money does that for everyone, disabled or not. Money makes the world go round!

My petition for more money to meet my needs isn’t going anywhere. Just recently my social worker applied for the emergency COVID-19 fund as CHC, (Continuing Health Care,) isn’t currently assessing people. My social worker was told I’m not eligible and advised her to tell me to use a Shewee!

What is a Shewee?

A Shewee is a plastic device to enable women to pee standing up. Never fear lovely readers this isn’t going to become an in-depth account of my personal habits. Now I could do a whole separate post ranting about how if I could stand up I could probably transfer and not need the device in the first place! Let me know if you’re interested in reading that, but my current thinking is that I’ll bore you to death, so let me just say, in fairness, that some disabled people have apparently found it helpful.

I’ve tried it and many variations thereof and am unable to use them sadly. Not to mention that this device, if useful, would only solve one of the things I need assistance with. My Social worker has advised me to put in an official complaint and I’m still waiting for the payroll paperwork to be completed in order for my PA’s to be on my payroll and have payslips every month. This is despite the fact that they have now been working for me for almost three weeks! #DirectPaymentHeadache.

Inclusive access gives choice and control

In other, more exciting news. I’ve started writing for Access Rating as a content writer. The company is run by disabled people and they aim to improve disability access by offering businesses access audits and encouraging people to record the accessibility of the places they visit. They have created an app that enables anyone to rate venues based on how accessible they are. It’s an idea that’s been done before via review websites but this is the first app that I know of. The rating system is really easy and takes less than 30 seconds unless you really want to add detail.

I’m really excited to be working with them as it helps me influence greater change and choice for a more inclusive society. The app gives everyone the chance to have their say and is free to download. Check it out and rate your corner of the world. 🙂

Personal Health Budgets give choice and control

If you’ve checked out my Facebook page recently you’ll see that I shared a link to BBC news which tells the struggle of a man in Wales to be allowed to manage his care package through a Personal Health Budget. You can probably tell that I am not a big fan of the way Social Care is run but I was genuinely shocked to learn that Personal Health Budgets aren’t an option in Wales! They may be a headache but they do offer the most choice and control for a lot of people.

What is a Personal Health Budget?

A Personal Health Budget is different from what I currently receive as I receive Direct Payments through Social Services. As I’m asking for a bigger care package my Social Worker is trying to get me funding via CHC. If this happens my needs will be fully funded at least partially by the NHS. I could still receive my money as a Direct Payment. As things stand at the moment Rhys and others like him can’t. The NHS decides what he receives and who provides that. I’ve since reached out to Rhys and been given permission to send him some questions.

I’m curious as to how he manages in a system that, according to everything I’ve read, takes away most, if not all, of his choice and control and I’m hoping I can assist in some way. I may be in limbo in many ways but at least I can choose who assists me.

I’m so grateful for the choice and control that I do have and having that inspires me to improve things for us all. This keeps me going, especially as for the last month both my electric wheelchairs require repairs! My private Power Chair has an as yet undiagnosed technical fault and the wheelchair given me by wheelchair services has unsuitable footplates and armrests meaning I can’t leave the house in either one! I have two chairs and I only need one to be working. When I next post hopefully they will both be in working order. What was that about buses?

pig-laughter

Until next time.

My Suspected Coronavirus Experience

This took longer to write than I thought it would. The idea was proposed to me by Disability Horizons magazine, I hope people find it interesting. It was pointed out to me when I submitted this to the magazine that I never actually received a positive diagnosis of Coronavirus I believe that is what it was but because testing was not widely available then, I’ll never know for sure.

Contracting Coronavirus

I live with my parents and brother. Back in April, I believe we all caught Covid-19, but our experiences of being ill were different.

Thankfully, none of us had it seriously enough to need hospital attention, but the road to recovery has been slow, particularly for me.

I’m disabled and have cerebral palsy, but I don’t think this makes me no more vulnerable to the virus than an able-bodied person. I’m probably as fit as any other 34-year-old who doesn’t exercise regularly.

Having watched my brother and mother become ill first, I knew it was only a matter of time before I caught it as my parents are my main caregivers at the moment.

My brother and parents’ symptoms

My brother and dad had what can only be described as ‘typical’ symptoms of Coronavirus – a high temperature and cough. How they felt matched closely with what we were being told in the news, so we assume they had the virus.

At the time, tests weren’t even widely available for NHS staff, so there was little chance of us being able to get tested. I would like to get an anti-body test, once they become available, to be sure that’s what we had. But I’m pretty convinced as it is.

Coronavirus recovery time

The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Coronavirus tests have said they experienced a horrible week, perhaps 10 days.

For me, it was two months from catching the virus before I started feeling close to normal again.

Back in April, the information available about how long we might all be ill suggested that we should’ve begun feeling normal towards the end of my second week.

But, as time went on, more details came out and the times seemed to vary. One article I read described someone having what he called prolonged Covid-19. They were ill for three months.

Pain

My first symptom of possible Coronavirus was pain. I assumed it would be sweating because there was so much talk of a high temperature.

It initially made me question whether I actually had the virus. But with my brother and dad having had what seemed so like Coronavirus surely it couldn’t have been anything else? 

I had what I can only assume was nerve pain. I say this because every muscle and joint in my body ached to the point where I couldn’t cope with sitting up as my hip joints were the worst. It was unbearable.

Pain killers didn’t touch it, but there would be random moments where suddenly all pain and discomfort would disappear, only to reappear again sometime later.

Temperature and cough

I didn’t really have a temperature, as has been talked about so much. I woke up sweating a few times in the night, but my temperature was stable.

I instead felt cold most of the time, and generally off-balance, which wasn’t fun. I also didn’t have any breathing difficulties or indeed a cough.

Confusion and rambling

Being confused and disorientated is not something I have experienced before, so this was new territory.

One second I would be convinced I had to do something, but the next I couldn’t remember what it was at all.

I tend to ramble anyway – why use one word when you can use 10?! But, apparently, there were times when I didn’t make much sense at all.

I was also aware that I wasn’t thinking as fast or as clearly as I normally do, right up until a few weeks ago. Thankfully, I now feel like myself again now.

Tiredness

Together with the other symptoms, I didn’t know what was going on half the time and, despite sleeping a lot, I was constantly exhausted.

I have so much sympathy for people who suffer from fatigue after experiencing what I did.

I’d be sitting or lying down, either watching TV or listening to an audiobook when my body and brain would suddenly want to sleep. Even worse, if I didn’t get my head down straight away, I would go dizzy and experience headaches.

The tiredness lasted the longest, about 15 weeks in total. Even when all the other symptoms had disappeared, I couldn’t actually concentrate to read or do anything without needing to go to bed soon after. I couldn’t look at my phone or laptop without getting an instant headache.

Lack of taste and smell

Not being able to taste or smell anything is now a recognised symptom of Coronavirus, but it wasn’t at the time my family was ill, so that threw another curveball.

For me, the virus caused the weirdest sensation. It wasn’t like when you have a cold and you can’t taste anything, or only taste the catarrh in your throat.

Everything tasted like dust. There was no texture to food either. Everything I put in my mouth could have been the same food.

I suppose at least it didn’t taste horrible, but trying to eat with no sensory feedback was hard. The lack of smell was easier to cope with as I’d experienced that before.

It was also weird when these senses suddenly came back. I was actually overwhelmed for the first two or three days afterwards as everything was suddenly different.

Nausea

This was the worst symptom. I suffer from nausea anyway, but it seems as though this virus had taken it to a new level.

As mentioned earlier, I had no breathing difficulties and I didn’t really have a cough. But I do believe that this virus, assuming it was Coronavirus, attacked my digestive system.

I felt like somebody had turned me inside out. If I didn’t eat, I felt ill, and if I eat more than a few mouthfuls, I was sick. It was a delicate balance that I’d mostly figured out by the beginning of week two.

The rest of my family stopped eating altogether for around two days and then felt better. My nausea lasted about six weeks.

I’ll probably never know if my theory is correct, but it was disconcerting to have an atypical experience when every day the news and NHS were discussing what to expect. My mum’s symptoms also echoed mine more closely too, so it wasn’t just me.

I hope reading this has been interesting and useful in some way. I’m so grateful that none of my family had to go into hospital.

With lockdown relaxing, I just hope people will be sensible so that everyone can get back to ‘normal’ and leave their homes without worrying about catching this awful virus.

I’ve been very lucky, but I never want to feel like that again. Stay safe everyone.

My next post will be about the importance of choice and control and how I’m still having to fight to achieve this! So much in fact that I’ve started a new Twitter hashtag, #DirectPaymentHeadache. If you or someone you know is having issues with the support you receive, DP or not, please get in touch. Together we can effect change for a more inclusive world. 🙂

Changing Places Awareness Day 2020

Today, 19/07/2020 is Changing Places Awareness Day in the UK and the government has announced that Changing Places toilets will be mandatory in big public buildings in England and that 37 motorway stations will have Changing Places toilets installed.

What are Changing Places toilets?

Changing Places toilets enable people who are hoisted or who cannot use standard disabled toilets to be able to relieve themselves in dignity and comfort with enough space for the equipment they need and also the people needed to assist them. Fitting a disabled person and the people assisting them into a bathroom with the door shut is a squeeze at best and impossible at worst. Changing places have plenty of space.

Changing Places Equipment explained

Changing Places Bathroom
A picture of a changing places bathroom with all the different components/adaptions labelled.

The hoist means that the facilities in this toilet can be used by people who otherwise can’t transfer. The height-adjustable bed provides a safe and clean surface for people who cannot use a toilet to lie down. The fact that it is height adjustable means the person/s assisting are not having to bend into awkward or painful positions to assist with toileting or changing the person they are with. There is even a shower so that an individual can get clean if needed, complete with a privacy screen. The floor is designed to be waterproof and easy to clean. This is a great step forward in inclusivity but it is not wholly inclusive.

I’m really pleased about the decisions made by the government today in regards to this as it means access and freedom to so many disabled people but I cannot use these toilets as there isn’t a static bar on a wall next to the toilet. Different adaptions suit different people and that is why it’s important to be conscious of inclusive design.

Why is the toilet in the middle of the floor?

With the toilet in the middle of the floor, there is plenty of room on either side of the toilet for a carer to be on each side of it. If someone is being hoisted two people can often be needed. This is also the reason there is plenty of space between all the equipment in the room. I’m not sure what the answer is to make Changing Places inclusive for all. My one idea is to make the grab bars on either side of the toilet longer. With assistance, I could then use the grab bar. I’ve yet to see any longer grab bars that fold up though. If they exist please let me know. Also, I would like to your experiences of Changing Places toilets and if you’ve found the shower in them useful?

Thank you to everyone who has voted in my poll so far, if you haven’t please consider voting now! It’s anonymous and will really help me make this blog inclusive.

My COVID-19 experience post is coming this week so keep your eyes or your inbox peeled by following me. Simply scroll down to the bottom of this post or click on the appropriate icon to the right. I’m now on Twitter!

Covid-19 and upcoming articles

Thank you to everyone who expressed concern for my health over the last few weeks. I am now fully recovered. Apart from your kind concern, I haven’t received any COVID-19 questions from any of you lovely readers yet but there has been plenty of interest in the actual article. It occurred to me that perhaps I’m overthinking things and I should just write about my experience but also that people may be concerned about anonymity. Please be assured that anything you ask me, only the question will be used. There is still time to get in touch if you’d like to. It also crossed my mind though that this blog may not be accessible to everyone. I’d be grateful if you would take a minute or two to vote on the accessibility of this blog. If it isn’t accessible tell me how to rectify the situation.

This poll is no longer accepting votes

Is This Blog Accessible For You?

Thanks for Voting!

As lockdown relaxes for some of us, I’m starting to put things in place for my new PA’s to start and will be writing about my journey as I go. I also have a couple more articles to write for Disability Horizons, a list of online courses which are still available to do from home and a money advice article. Keep your eyes peeled for those! I have a busy few months ahead. Stay safe everybody.

My COVID Experience

I’ve been asked by Disability Horizons to write about my experience of COVID-19. Rather than just write how I felt I think it would be of more interest and use to you, the readers, if I answered any questions that you might have about what it’s like to be ill with this virus. I’m really interested in what you would like to know and I’ll do my best to answer them. There are no silly questions so get asking.

error

Enjoy this blog? Please spread the word :)