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Wheelchairs; the true cost of freedom

katestanforthkatestanforth Posts: 1Member Listener
edited February 7 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 Posts: 5Member 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 Posts: 1,668Member 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 Posts: 1,601Community champion 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:
  • Richard_ScopeRichard_Scope Posts: 1,821Administrator 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
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