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Wheelchairs; the true cost of freedom

katestanforthkatestanforth Member Posts: 1 Connected
edited June 3 in Guest blogs
Kate Stanforth is 25 years old and a disabled activist with multiple, life-long health conditions. She is a lover of dance, volunteering, onesies and her assistance dog, Spencer.

At the age of 14, my life changed overnight. Once an active, intelligent, teenager who danced up to 7 hours a day, I now needed spoon-feeding in bed. It took months before I finally accepted that I required a wheelchair, but the journey of getting the appropriate wheels is one which took much longer.

Black and white of Kate stood in a ballet position extending her arms and legs Her wheelchair is behind her

The Wait

After being on the list for wheelchair services for many months, we attended our first appointment. Despite my mum virtually carrying me in, the specialist was reticent to even give me a wheelchair as it ‘could cause further deterioration’. But I eventually got one. We went through three NHS chairs, all of which continuously broke and didn’t support my tall, thin and fragile frame.

According to figures from NHS England:
  • 70% of wheelchair users wait more than three months for their chair
  • 30% wait more than six months
  • 15% wait more than 12 months

For people with complex long-term conditions, being able to access the right wheelchair quickly and with appropriate support is of upmost importance.

Fundraising

We’ve spent around £10,000 on wheelchairs alone. Thankfully, three quarters of this has been fundraised for, whilst the rest is all of my parent’s savings. The community rallied around both of my fundraisers which were 5 years apart; the first was for a manual chair and the second for a powerchair. I can’t help thinking though, the success of my fundraisers really did depend on them.

Kate in a wheelchair in the middle of the photo she a group of people on either side of her who are all wearing white t-shirts

On Twitter I asked how people raised money for their chairs and received heartbreaking responses. From remortgaging houses, to giving up Motability cars, people are suffering to get their vital equipment. Yet I can’t help to think that part of it comes down to your own social presence too. Imagine if the number of Twitter followers that you had impacted your ability to get out of the house. This also determines if you’re going to be in significant pain or able live independently. This is what some of us face.

Support

Accessing an NHS wheelchair is a lottery and getting a powerchair requires you to fit multiple criteria including not being able to walk around your house at all and having the house adequately adapted. This is why so many of us have had to turn to grants or fundraising. Scope has information on their website regarding schemes such as Access To Work, Motability and local grants which may be able to help towards costs of wheelchairs. For fundraising, the most common method is to set up a GoFundMe account. From community events to social sharing, every penny counts, so the key is to build up a platform to reach your target.

The Impact

Wheelchairs provide independence, well-being and quality of life for thousands of people. They reduce isolation, improve job prospects, education and allow users to take part in activities. So why are we all having to fight to get one? NHS England says, for every 182 wheelchair users not able to work, the benefits bill can increase by up to £1m, whereas the positive economic contribution made when in work can be up to £4.7m. Providing disabled people with the right equipment really could reduce costs long term. Reducing isolation rates would reduce those needing mental health support. Having correctly fitting wheelchair can save the NHS up to £154k in a person’s lifetime from pressure sores. And, increasing the number of those able to work would reduce the number of people on benefits.

 Kate smiling in gym wear with her arms in the air She is in a dance studio and sat in her wheelchair

So why aren’t we doing more? I understand the NHS is stretched, but why are we having to fight for such vital pieces of equipment. I personally would like a review on the NHS guidelines for wheelchair users and have a discussion in parliament about how we are going to support wheelchair users better. We fight for our chairs. Then we fight for our access. It’s time, someone fights for us.

If you are one of the 1.2million wheelchair users reading this and have had to fight to get the correct equipment, I hear you. If you are still fighting for the right equipment, keep going. It shouldn’t have to be like this, and something needs to change.

If you’d like to follow Kate’s journey then you can do so via her Twitter or blog.

How have you found NHS wheelchair services? Did you fundraise for your chair? Do you struggle to get equipment which is suitable? Let us know in the comments below!

Replies

  • DawnTLDawnTL Member Posts: 5 Listener
    I have I have a NHS wheelchair, it is big, bulky, heavy and uncomfortable, it also constantly bruises my inside forearms where they knock onto the armrests when I’m pushing myself. 
    I try my hardest to push myself all the time, as I hate being pushed, but it depletes my limited energy resources and increases my pain levels.
    Wheelchair services offered a voucher for a couple of hundred pound towards a lightweight, easily manoeuvrable, comfortable, supportive chair that costs thousand and nothing towards a power pack to transform it into a powered chair for bad days when I need the help.
    I know that funds are limited but there should be more assistance available, at the moment I spend half my time in bed recovering from the pain and fatigue my wheelchair causes.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    I guess I am one of the lucky ones. But having said that, I have spent around up to 10k of my own money on manual, electric wheelchairs, plus a scooter.

    I now have a really good power chair from WS. The one before this was via Motability. I was naïve in thinking that after the 3 year term and having paid nearly 4k in DLA payments, I would be able to keep the chair. WRONG!!! I would never recommend getting a wheelchair this way.

    I have suffered years of chronic back pain, but got a new contoured backrest for my chair and a new seat cushion recently and the pain has vanished. I get discomfort but not that terrible low back pain.

    So yeh, I am one of the luckier ones.

  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    A really interesting post so thanks, @katestanforth.  I am also lucky enough to have been able to get a wheelchair on the NHS without any trouble (maybe things are different with NHS Scotland) and it has only been in the last 4 years where I have needed to use it more as walked with my crutches up until then.  

    Really terrible to hear that so many people struggle to get this basic piece of equipment though!  Good you are highlighting this to us.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Richard_ScopeRichard_Scope Administrator Posts: 2,350 Scope community team
    edited February 5
    Thanks, @katestanforth, it can be an absolute nightmare to get a suitable wheelchair from the NHS/Wheelchair Services.
    My last wheelchair was provided by the NHS after I literally had to beg on more than one occasion for help as the wheelchair I had had a snapped backrest. This meant I couldn't go to work, or the bathroom on my own, causing my partner to take annual leave to stay with me at home in case I needed help.
    Wheelchair Services flatly refused me a wheelchair on the basis that I worked and earned too much apparently! After almost 5 weeks they called me and offered me a wheelchair that had been turned down by a soldier who was injured in Afghanistan, the M.o.D had provided him with a wheelchair that better suited his needs. 
    Of course, I accepted the wheelchair with open arms. I spent the next 7 years in a wheelchair that was built a young, fit, double amputee. Not, for someone living with quadriplegic Cerebral Palsy.
    We managed to save over those 7 years for my current wheelchair. I can sit up, I'm comfortable and I can push for miles. Essentially I had to buy my life back.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello and welcome! 

    I previously had a very bad experience with NHS wheelchair services. I emailed them when my son was a baby to ask a few questions. Eventually I looked at alternative and more expensive sources of funding and asked around too. I even set up a appointment with a local mobility aids shop to try out some wheelchairs, make notes and find a wheelchair. My son came along on one occasion as I wanted him to be a guinea pig for half a day. 

    I’m happy to write a article for Motability magazine on tips on finding and buying a wheelchair too. I think that there needs to be a lot more discussion and awareness when it comes to wheelchairs as well. Who wants to start a petition for more wheelchair skills classes? 

    We obtained a wheelchair privately. I met with a wheelchair engineer from the company to talk about my son's needs and form a plan. We then purchased a fairly expensive wheelchair using another funding source that was recommended by a doctor.

    You are totally correct. We can do much more. I also talked yesterday with a man at my local gym who was in a wheelchair for a few minutes. He had some issues. I read a article about this man Jeff who had problems trying to buy a wheelchair once. He asked his friends at the pub for assistance and they rose to the challenge. Why can't more people be like that? Half of the trouble will actually get solved.

    Common sense must prevail. 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    I would be wary of a wheelchair dealer.....do they have the correct knowledge to sell us the RIGHT wheelchair?

    I have personal experience of this going wrong.

    I would highly recommend my local WS...their care, interest, expertise and help was 100%
  • Richard_ScopeRichard_Scope Administrator Posts: 2,350 Scope community team
    @pollyanna1052, my experience with WS was the complete opposite. I was left feeling that I had been made to beg for a wheelchair. When they eventually did give a wheelchair it was one that was built for a double amputee who no longer wanted it because the M.o.D had provided a better one.  I was stuck in that rotten thing for 7 years until I could afford a wheelchair privately.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    I`m really sorry to learn that Richard.
    Our WS covers a massive area, but manages to fit me in.

  • littleacornlittleacorn Member Posts: 53 Connected
    I am going through wheelchair services at the moment - well its on hold at the minute of course. I was assessed in December 2019  previously having a power chair from access to work which is falling to pieces. The problem is that I have now been introduced to 3 chairs which are not suitable for me for various reasons. Does anyone know what will happen if wheelchair services cant find a chair that is suitable for me? The one I currently have is 13 years old and no longer manufactured.

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hi @littleacorn!
    Good question. I had the same problem when my son was a infant. After praying to the Holy Spirit, I emailed the family fund for funding to help. I did try the nhs wheelchair services first but to no avail. My key piece of advice is to try out some wheelchairs. And make some brief notes on them too. That way you can come to a informed, well researched and thought out decision.
    Best of luck! I went down the private wheelchair acquitision route eventually out of desperation. Ask a special needs charity for help. Or you can always fundraise. Set up a gofundme or justgiving account. If all else fails, ask your coworkers, family members or friends to help. 
  • neuromum4neuromum4 Member Posts: 67 Courageous
    I was told you can get a voucher towards buying your own.
    The first time I was assessed in April last year they gave me a self propelling one. I can only use  when being pushed because of my muscle weakness.
    I got reassessed for a power one they said because I have a Tempory ramp and my whole house is not wheelchair accessible I can't get one.
    They said when the adjustments have been done or if I move then I would get one.
    Try some chairs out and see what is best for you, you could get the voucher or approach some charities.

  • littleacornlittleacorn Member Posts: 53 Connected
    The problem is where do I find a large range of chairs. I have even been to a motability show where manufacturers have stands and I still cant find what meets my needs. It I could I would go for the voucher but until I can find a chair it is no good.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,350 Scope community team
    Hi @littleacorn, what kind of chair are you looking for? Perhaps I could help?
     

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • littleacornlittleacorn Member Posts: 53 Connected
    Powerchair which is low and back folds or can be removed to fit in the boot of estate car with a hoist.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,350 Scope community team
    I have found a company that specialises in lightweight, foldable power chairs. They can be found at www.careco.co.uk
    I would call them and explain what it is you would like. Before I think about buying a wheelchair, I create a list of 'Must Have' and 'Would be Good to Have'. 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • littleacornlittleacorn Member Posts: 53 Connected
    Thanks for the info I will have a look on their site
  • littleacornlittleacorn Member Posts: 53 Connected
    I have looked on the site and my difficulty is that although I need a chair which is low and the back can be removed I also need a very shirt depth in the seat. This company have nothing suitable. I have looked at so many manufacturers and still cant find anything. I just dont know what will happen if there is no chairs out there to meet my needs! The chair I have now is on its last legs and is no longer manufactured.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,350 Scope community team
    Have you called manufacturers and given them the exact measurement that you would need? Lots of companies are happy to discuss bespoke designs.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • littleacornlittleacorn Member Posts: 53 Connected
    Yes spoke to many of them some ask you to contact their distributers as they wont enter into much dialogue directly.
  • RonniRonni Member Posts: 162 Pioneering
    I went through motability for my chair. They advertise with company I chose. When they bought different. They did for yrs has several chairs. They fine fine for you.. by then you have applied for it. First I chair had was the quickie. Then couldn't a new one anywhere.  The one I have now is I'll design for anyone. Not just because of pressures I've got on legs and feet. Theres sharp edges at the footrest. The nurses have wheelchair service to come. I'm on list that is hold. Im told cancel chair I would pay for this
     One. Went through motability because the breakdown aspect if chair breaks down outside. But that isnt a minicom txt number so useless. I miss the quickie was like a normal wheel chair same height et just with battery.
  • laura010laura010 Member Posts: 2 Listener
    Struggling to raise funds to get a powered wheelchair 
    desperate for my independence back I’m 36 years old been indoors since 2018 can only get outside with assistance taken just over 9 months to get an nhs wheelchair it’s so big and heavy I can’t manoeuvre it myself and my children struggle to push it. 
    My family managed to buy me  a wheelchair from careco but it broke the first time I used it my daughter pushed me into town and the frame snapped taking the wheel with it, we both ended up in the road.
    I was hopeful that I could  fundraise the amount that I need to get a powered wheelchair but it’s not happening anymore the pandemic has meant the events that were planned have all had to be cancelled. 
    I just need my independence back to be able to get around without needing someone to help me. 
    Any advice would be greatly appreciated 


  • Wini1960Wini1960 Member Posts: 98 Courageous
    [email protected] have you looked into.hiring one whilst trying to.raise funds which is not easy due to the pandemic. Sometimes Careco do have sales. I got my scooter at sale price. I wish you all the best🙂

  • littleacornlittleacorn Member Posts: 53 Connected
    Contact citizens advice who can talk to you the chair which has broken and where to go for support for a power chair. They do telephone calls for those who are housebound. Your GP might also be able to help.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,350 Scope community team
    laura010 said:
    Struggling to raise funds to get a powered wheelchair 
    desperate for my independence back I’m 36 years old been indoors since 2018 can only get outside with assistance taken just over 9 months to get an nhs wheelchair it’s so big and heavy I can’t manoeuvre it myself and my children struggle to push it. 
    My family managed to buy me  a wheelchair from careco but it broke the first time I used it my daughter pushed me into town and the frame snapped taking the wheel with it, we both ended up in the road.
    I was hopeful that I could  fundraise the amount that I need to get a powered wheelchair but it’s not happening anymore the pandemic has meant the events that were planned have all had to be cancelled. 
    I just need my independence back to be able to get around without needing someone to help me. 
    Any advice would be greatly appreciated 


    Hi @laura010

    Have you seen the Scope webpage that has fundraising ideas A-Z? Really it is aimed at people wanting to raise money for Scope but I think it has some creative ideas that could be used when fundraising for other causes: 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • littleacornlittleacorn Member Posts: 53 Connected
    No not aware of their page but will have a look thanks.
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