DISCLAIMER: Views contained in this post are my own or that of the featured individuals who's stories are shared. This post in no way, shape or form an attack on NHS wheelchair services, merely the experiences of a specific group of wheelchair users living with progressive illnesses who need specialist wheelchair that cannot be catered for.
When people think of disabled-related expenditures they think - taxis, adaptive aids in the home and perhaps even extra clothing, but what doesn't jump to the forefront of people's minds (even within the disability community at times) is the very thing that keeps us connected and involved in society and gives us a decent quality of life; our wheelchairs.
Yes, there are options such as NHS wheelchair services and the Motability Scheme but what happens when you need more than just a chair with wheels? What about people with complex medical needs to which they need custom specialist seating, re-positioning functions or have a wheelchair van under the Motability Scheme for example, but they need a new wheelchair now?
Here's the lowdown on Wheelchair Services and the Motability Scheme;
- NHS Wheelchair Services is a postcode lottery on how much funding you'll be allocated for a wheelchair their own assessment determines you can live with, not what you think would make your life easier - physically AND mentally. Yes, the system is there for anyone that needs it but sadly even several years down the road it is filled with endless hoops you're made to jump to be worthy of a chair that even comes close to working for you. Talking specifically about powerchairs, if you cannot change your own position, many councils only approve tilt/recline functions on the chair if X amount of pressure sores have been logged by your GP. If you haven't had x amount, despite being in considerable pain you most likely won't be approved those features on the chair. Nevermind the seat elevator or leg raiser capabilities, those are the two 'holy grails' of powerchair features hardly anybody gets approved for via wheelchair services. These are deemed as "luxury" add-ons, despite you could argue the ability to raise high up in supermarkets would save on social care to pay someone every week to help you shop. Leg raisers helps prevent pressure sores on the heels/edema in the legs and means you can do your own leg stretches - again saving on many care hours a week for someone to be paid to come do them manually. Many people don't get enough support hours as is with all the cuts to disabled people over recent years. And it's not just about the powerchair features that make all the difference, wheelchair services are only contracted with 2-3 brands of powerchair and they often don't fair well outdoors despite what assessors tell you. I learnt this the hard way but that's a story for another post!
- The Motability Scheme is well known for its vehicles, more so than powerchairs and scooters. Many full time wheelchair users/families with children with complex needs have a specially adapted WAV (wheelchair accessible vehicle) on Motability. You have the choice of applying for a vehicle or wheelchair/scooter. Not Both, as the scheme takes the Mobility component of the disabled individuals DLA/PIP. A vehicle is the ultimate life line for families to get from a to b. So when that disabled person's current wheelchair meets the end of its life (3-5 years at best for standard powerchairs) you CANNOT then apply via Motability for a new chair if you've already got a lease on an accessible vehicle. Unless of course you want to terminate the lease early (which is no easy feat), hand back the vehicle that was the difference between staying in and venturing out into the world for the sake of being able to move around under your own control period. A disabled person should not have to choose between the ability to mobilise independently and leaving their house.
Keeping all the facts of both schemes in mind, those who've seen my fundraiser consistently across social media may understand a bit more about why I joined thousands of others with complex needs in this country by fundraising for a specialist powerchair.
As someone with a progressive, life-limiting muscle-wasting condition, I need those functions wheelchair services have turned down. I've had these functions on previous chairs since age 14 after my Spinal Fusion surgery. To go from having specialist postural support, a pressure relieving cushion, tilt and recline capabilities to being put in a bog standard powerchair with standard seating, no extra support and no ability to re-position myself. I'd be in agony and unable to sit in it for even a short period of time without needing to go lay down in bed just to have that pressure relief. Accepting that from wheelchair services would cause a drastic decline in my quality of life. It's not just My life either, if I can't sit in my wheelchair for long periods, how can I do what I can still do for my young children? How can I safely be a Mum, take them on the school run or to the park in a chair I can barely sit up in nevermind the fact that wheelchair would be unsafe outdoors without someone ALWAYS with me. I don't get 24hr care as is, they certainly wouldn't up my care needs if I was staying in all the time. It'd make me more disabled than I actually am and would affect my littles, something I swore I'd never let my condition do.
As for why the Motability Scheme isn't an option. Mid last year the lease on my current powerchair - an Invacare Kite (that is now beyond repair and hanging on by a thread) was up and I had the option of paying off the remaining balance or turning it in for a new powerchair through them. At the time there was Zero things wrong with it, it had a full MOT and Motability agreed it'd likely last a good few years still despite constant hard use from my busy lifestyle as a disabled Mum and active disability rights campaigner. So I decided to pay it off, to free Motability up for me to do something extremely life-changing for me and the girls - Apply for a drive-from WAV (a wheelchair van that a wheelchair user drives with their wheelchair locked down at the wheel). I've been using public transport with 2 small children, 1 visually impaired and me completely non-ambulatory for 6 years now. If you've read any of my public transport posts on my perspective as a wheelchair using Mum of 2, despite how I apparently make it look easy, the reality is its far from it. We can miss several buses in a row, I can't get on with the girls if there's a buggy on, different bus companies have different roles about wheelchairs and buggys, so when you are travelling with both as a family unit, it can turn a day out into an absolute logistical nightmare.
1 of 1,000s
Whilst on the journey fundraising for my own chair that I know is right for my needs long term, I've gotten to talk to some of the 1,000s of other disabled people who were faced with identical dilemmas as me regarding wheelchair services being unable to provide an adequate chair. Here's what they had to say;
Society is vastly unaware of the sheer extent of the issues surrounding someone with a progressive condition and their wheelchair needs. Just how many individuals with complex needs are being failed by NHS wheelchair services. Out of 42 individuals I spoke to who were let down by the system, 36 went on to battle, self advocate and fundraise themselves for a powerchair that DID meet their needs, while the rest suffer in silence with inadequate mobility equipment and even become bed bound. With employment amongst disabled people difficult at best to establish, a huge portion of these individuals cannot simply afford these extortionately priced yet life-changing bits of equipment. Employment rates are lowest for individuals who don't receive enough care hours that they'd need to support themselves in the workplace since the abolishment of the Independent Living Fund in 2015.
So what are the other funding options?
Focusing on disabled adults over the age of 18, disability equipment grants are scarce in comparison to the amount of charities available to help with the equipment needs of disabled children.
Going back to my own fundraising journey, I found I didn't qualify for most of the grants available for disabled adults either because;
- I was too old e.g Elifer foundation have stopped supporting applications over 28yrs so I missed out by literally a few months
- I'm unemployed due to my condition, despite I do voluntary work- Not in the right postcode area
- Don't have a condition that met their criteria
There's also the option of requesting a wheelchair voucher from wheelchair services once they confirm they cannot provide a chair that meets your specific needs. Only this is also a postcode lottery, some councils don't even offer this as an option due to strapped budgets. Those who do get a wheelchair voucher granted can usually expect anywhere from £500 to £2,000. The later sounds brilliant in theory, but then if you consider how much these specialist powerchairs actually cost - sometimes upwards of £16,000. £2,000 suddenly seems very little but at least it gets the ball rolling!
Why is the Right wheelchair 'Everything' to someone with complex needs?
Lucy Watts, 24 from Essex who lives with a rare Neuromuscular Disease explains this very well -
" I fundraised for my Permobil F3 Corpus over the course of July - September 2015, managing to raise the money in just under 3 months. It transformed my life. My life is incomparable before it.
I can sit up all day, go to events, so voluntary and paid work, enjoy living life to the full and doing the things I want to do. It's transformed my life in so many ways - and the good thing about Permobil was it was built entirely around my needs, including hooks for my TPN (intravenous feed) rucksack, a built in drip pole to do intravenous medications on the go, a hook for my Urostomy drainage bag, lateral and thigh supports, they reprogrammed the chair to go full speed with my legs elevated - something they'd never done before, as I need my legs elevated 24/7 and the chair was extremely slow with the legs elevated - hence my request, and also built in two lead hooks into both armrests for me to attach my Assistance Dog Molly to my wheelchair. My chair has changed my life for the better - what it's given me is priceless!
Raising £22,500 in the early days seemed impossible, but people really got behind me and I can't thank them enough for giving me a new chance to live my life and contribute to society. I wouldn't be able to do my work - for which I received an MBE in 2016 - without this chair. If I'd of accepted the basic powerchair from wheelchair services with just the tilt feature it would of been more disabling. In that respect fundraising was well worth it! Also, the chair can be adapted to my changing needs as my condition progresses. It really has given me my quality of life back. You can't put a price on that... "
Speaking with Shona, Vivek and Lucy, it made me rethink my outlook on my situation. Their stories of being let down by the very system that's meant for people like us, overcoming it through their own will power, determination and self-belief that they deserved to live their lives the way they wanted (disability or not). The attitude that obviously paved the way to their ability to achieve their ultimate fundraising goal has made me believe in myself that I am too worth it. I do deserve to be the best (disabled) Mum I can be, let my passion for disability rights movements and campaigns take me as far as possible, go and experience all the little and big things in life my condition has somewhat prevented in the past and to be as independent as possible. Everybody deserves these things in life.
Our aspirations and quality of life should not be diminished by a wheelchair not fit for purpose. We shouldn't have to settle on a less full filling life just because of wheelchair provision. I certainly don't want to make-do anymore, it's NOT my muscle-wasting condition that holds me back and causes unnecessary physical and emotional suffering (as society would have you believe!) It's the constant fight for access to the very things that were invented to make our lives easier and the unfathomable economic cost of a disabled persons quality of life...
With that I'll draw this 1st post on this complex topic to a close and hope it has shed light on something the general public may not be aware is happening every single day. I hope it also inspires others in similiar circumstances to realise they deserve a suitable and decent chair, no-matter the lengths you may have to go through to get it. You cannot put a price on your freedom!
- Related Links -
Help fund life-changing powered wheelchair for Disabled Mum of 2 w/ rare form of Muscular Dystrophy
My ongoing Justgiving fundraiser
'Wheelchair Provision' ~By Vivek Gohil
Detailing Vivek's own fundraising journey
'My Wheelchair Is My Freedom' ~ By Shona Louise
Focusing on how wheelchairs are seen by society and Shona fundraising journey
This blog post is linked up with;