What if we viewed lived experience as an asset? As an asset of professional, economic,…
On Tuesday 28th June 2016 I participated in a TweetChat with NHS PHB and others, discussing PHBs for wheelchairs to replace the inadequate wheelchair voucher system and hopefully improve the postcode lottery that currently exists. It was a wonderful debate and discussion of ideas, and I was very pleased not only with my own contribution, but the contributions of others. It was great to discuss our ideas about how PHBs for wheelchairs would work, as well as the importance of thorough assessments and each service joining up with other services and other aspects of our lives and our care.
In NHS wheelchair services, and in today’s climate, provision of wheelchairs is woefully inadequate. The lack of funding is putting a lot of strain on wheelchair services and means they provide only the cheapest of wheelchairs which, sadly, do not fully meet patients needs in the short-term, let alone in the future, especially in the cases of progressive conditions or eventual deterioration. With a lack of resources it’s hard to meet the needs of the growing population of wheelchair users with cheap chairs, let alone more expensive ones, but as a result, disabled people are being forced to seek funding from charities and fundraising campaigns just to get an essential piece of equipment; a wheelchair is not a luxury, it is our legs, our mobility, our independence. We rely on them to get around, without which people would be housebound, or for patients like me, completely bed bound. We cannot live any sort of life without a suitable wheelchair, and sadly wheelchair services have lost sight of, and cannot afford to provide for, people with complex, specialist needs who are dependent upon expensive wheelchairs. Charities funding wheelchairs are saturated with requests for funding as a result.
I would know. I became poorly and a wheelchair user in January 2008, at the age of 14, after a childhood full of problems that were never connected or explained. It took 10 months following becoming wheelchair bound to receive a diagnosis, Ehlers-Danlos Syndrome, which came four days after my 15th birthday. I received my first manual wheelchair in March 2008. I struggled in the manual wheelchair, unable to propel myself thus dependent on someone to push me wherever I wanted to go; even if only a few inches backwards or forwards. I persevered like this, since I was almost completely bed bound anyway, for over three and a half years, until I moved house and started college. I was only well enough to go in for an hour a day, despite doing three A levels in the sciences, due to not having a suitable wheelchair, and due to my conditions. We had spoken to wheelchair services about a powerchair prior to moving, but our old house couldn’t have been made wheelchair friendly at all, unless you knocked it down and started again. So, through necessity and due to my needs increasing, the house being unsuitable, and my parents’ divorce, we moved into a lovely bungalow five minutes away from our old house. The occupational therapist who was assessing me for all things non-wheelchair, arrived to assess the house only an hour after we got the keys and could start moving in. She was fantastic. She immediately put the application in for a wetroom, which took another 2 years to be adapted, made the applications for two doors to be widened, and then, we thought, came the most crucial step of all; wheelchair access (ramps). After thinking we’d be able to get the ramps and start the powerchair process immediately after moving in, we were to find out we were completely unprepared for reality. We applied to wheelchair services again for an assessment for a powerchair, but the minute they realised, despite living in a bungalow, that we didn’t have ramps, they denied me on that count. Not even to assess me. So, we turned to the OT about the ramps, after she had assessed the house the day we moved in. We were to find that the budgets were spent for the following three years, so there would be no money to provide ramps for me or anyone in our area until at least three or more years later. Combined with this three-plus year wait for ramps, we couldn’t have the powerchair assessment without ramps, and even once we had the ramps put in, there was an 18 month waiting list for a powerchair assessment, so we were told. As a result, that’d have been at least four and a half years before I could even be assessed for a powerchair, provided I was first on the list to get ramps once the budget was available again and first on the list to get assessed for a powerchair. Four and a half years to get some mobility and independence! It’s crazy.
I couldn’t wait that long. College was so difficult in an unsuitable manual chair, I couldn’t be independent, and it was hampering my ability to do my work. I needed a powerchair, so I could drive myself and so my carer could leave me in class – the fact I had a carer seemed to put people off talking to and including me – and I could move around the college independently, but also needed a chair that could tilt me back to help with one of my conditions which causes blood pooling in the legs and lower abdomen, causes low blood pressure, a high heart rate, an intolerance of being upright for long periods and could lead to me passing out. I also needed a chair with seat rise on it, so that I could reach the top of the burette to do my own experiments, rather than relying on someone to do the physical experiment for me, acting on my exact instruction. It was hampering my ability to learn. With nowhere else to turn, and desperate to fit in at college, to be able to attend for longer, socialise with my peers and to get out and about outside of college, such as to walk my dog, we chatted to my OT at wheelchair services about what wheelchairs would be most suitable, and he recommended a Quickie Salsa M. So that’s what I tried, and it truly was perfect for what I needed, with tilt in space and seat rise. We set about fundraising the £8000 to pay for it. We managed to raise the amount in two months, and I finally got the chair in March; but we didn’t have a suitable car for me to travel in the chair in the car, so I couldn’t get to college in it. Sadly, also, by the time I received the chair, I was too poorly to attend college anymore, my gut having failed and my body suffering the effects of severe malnutrition that very nearly claimed my life.
However, a year later I was getting out and about in my Salsa M, walking the dog, we went to see the Paralympic dressage in Greenwich, and getting out and about generally. I was considering going back to college, but my conditions hampered that. I now had a central line, a line into my heart, and was depended on intravenous nutrition, which was slowly pumped in through this line into my heart. My digestive system had completely failed and my condition generally was progressing. However, the one good thing I had, for my good days, was the wheelchair, and I didn’t half test my Salsa out on some dog walks, got stuck on a few occasions, and got it through some small spaces most would consider impossible for a wheelchair. It was the key to me getting out of bed. It took me to the stables to see the horses I used to ride, it took me on dog walks, and then, when the opportunity arose, it took me to Parliament, the Department of Health, many events, meetings and more. It allowed me to start training Molly as my assistance dog, and have a go at agility with her. It allowed me to build a life for myself writing, speaking and attending events for charities. It allowed me a life, where previously I hadn’t had one since becoming poorly and disabled in January 2008.
However, needs do change, and my condition continuously deteriorates at a variable rate, sometimes deteriorating rapidly, other times more slowly, but nevertheless, always deteriorating. It meant that by December 2014, I was struggling. I didn’t have a chair that could elevate my legs or recline the backrest, and I needed a new chair, fast. I managed to scrape together the money to buy a Quantum Q4, with electric tilt, electric recline, manual elevating leg rests, but no seat rise. It really was only a stop-gap chair, and the longer I had it, the more unsuitable it was for my needs. I was in agony sitting in it, it wasn’t supportive enough, it didn’t have all the functions I needed, and I couldn’t drive around if I was even slightly tilted or reclined. It also used to get stuck half way up the ramp into the car where the level mechanism would feel the chair on a tip and completely stop it working. It was causing more harm than good, and so onwards went the search for a new powerchair. I found Permobil chairs through a friend who had tried one out. I instantly knew it was going to be the perfect chair, even down to the shape of the seat, the support, the whole chair, with much customisation, would fulfil my requirements completely. The catch? The NHS won’t fund a chair for someone at a cost of £22,500, and I’d probably still be waiting for it now even if they did, plus it wouldn’t have all the functions and customisations I need for it.
I now had the task of fundraising for it. I had experience from 2011 when we fundraised for my Salsa, but this time, I was doing it without help. It was only me. I managed to raise that fantastic total in 3 months; to raise £22,500 in three months is astonishing, and I am so grateful to those who supported with monetary donations, those who supported my fundraising, and also those who supported in sharing the fundraising campaign or talked to people they knew. I am forever indebted to those who supported my campaign. So I had the money and was able to order the chair. My requirements were unusual, but Andy at Permobil UK worked tirelessly and creatively to get the wheelchair right. I needed a chair with all electric functions – tilt in space, recline, elevating leg rests and seat rise; lateral and thigh supports; curved calf supports; a tilted footplate to reduce the angle through my ankles; a special cushion; hooks on the back for my TPN rucksack and Urostomy drainage bag, and a strap to hold them steady so they didn’t swing and fly around; a built-in drip pole so that I could have intravenous fluids and medications whilst in my chair; I needed the chair to drive full speed with the legs elevated, as I drive around like that normally to reduce blood pooling; I needed the leg rest as low as it’d go since I am so tall (6’1) and I needed a built-in lead hook for Molly’s lead so that I could walk her hands free. A lot to ask and to include in one chair, but Andy made it a success, with a bit of trial and error. Would I have got all of this on the NHS? Absolutely not! However because I fundraised, I have the most perfect chair which has revolutionised my life. Since I got it in September 2015, it’s taken me to Parliament, the Department of Health, the Cabinet Office, Sky News, BBC Essex, Buckingham Palace, and allowed me to appear in a BBC Three documentary, and attend other events and do other work. Without this chair, I’d be stuck in bed because my old chair was not suitable for my needs. And in a lovely way, I donated my Quantum Q4 to a friend who would otherwise not be able to get a suitable chair.
That is my story of how I could not get a suitable chair on the NHS, and my journey through fundraising for suitable wheelchairs. The NHS would not only not have given me a chair with all the suitable functions for the immediate future, but long-term they wouldn’t have given me something that can adapt to my ever-increasing needs and continuously deteriorating condition, unlike how my Permobil has continued to be suitable in spite of massive deterioration since it arrived in September 2015. It will continue to meet my needs, and can always be adapted to suit changing or increasing needs as time goes on. That’s what you call a suitable chair. A powerchair that gives someone independence, quality of life, allows them to pursue their hobbies and passions or even allow them to work, enables them to have a social life and to do everything they want to and gives them their life back, as well as meeting all their needs and requirements, now and in the future. That is a truly suitable chair, but the NHS cannot provide expensive chairs, thus patients turn to fundraising to get such a chair. Many people can cope with NHS chairs if they have small or simple needs, and only need a basic chair, and they work very well for people, but my needs don’t allow that. Without my Permobil I’d still be stuck in bed, and I wouldn’t have done all I’ve done since I got the chair in September. My charity work would’ve ground to a halt completely, and so would my life. Had I waited and received an NHS chair, I’d still be waiting now, and wouldn’t have a truly suitable chair at the end of it, thus I would still be stuck, uncomfortable and not able to do everything I want to.
Where wheelchair services lack funding, and cannot afford top-of-the-range chairs, patients are getting unsuitable chairs that won’t last. In that sense, wheelchair services shoot themselves in the foot, as they provide for the now, not for the future, and patients deteriorate and in 3 months, 6 months, 1 year, 2 years wheelchair services are forking out for another new wheelchair and usually a more expensive one to meet their increased needs. It’s crazy. But that is because wheelchair services don’t have the funding to do it any other way. I’m not out to criticise wheelchair services, they do their best in a bad situation and with a shoestring budget, but they do need to consider the long term, as they will save money in the long run.
I do hope with the potential introduction of wheelchair Personal Budgets this may change somewhat, or be easier, but sadly, funding isn’t going to be increased, rather, simply rerouted through a new funding process. At the end of the day there’ll be no new money, so the contribution they can give towards a chair will remain the same, but I hope it’ll give people more flexibility and control. If it were to be combined into someone’s pre-existing PHB (for those that have one), they could pool some of their spare care hours, if they have any, and use that in addition to the wheelchair services grant to cover some of the cost of the chair. However, it wouldn’t really make a difference for expensive chairs, as the patient will still be left fundraising a large sum or securing charitable grants to cover the majority of the cost of the chair. I think it’ll improve things, but it won’t change the situation and it won’t add any new money to the ever-dwindling pot of money wheelchair services have to fund wheelchairs from.
Our wheelchair services need a complete overhaul, and I truly believe in the future assessments for any form of support or equipment would become a multi-agency assessment. The person would have a holistic assessment ranging from nursing and personal care needs (to be funded through Continuing Healthcare and/or Social Services), to equipment such as wheelchairs from wheelchair services, to daily living aids and transferring aids/hoists, to household adaptations including wet rooms and ramps from the Local Authority, and even psychiatric/mental health, therapy and wellbeing needs assessed to put all the patients needs in one place, in one assessment, that all services can refer back to and know what each other has assessed in their respective areas. A carers assessment should also be performed to make sure the carers’ needs are met too. Multidisciplinary working is the name of the game in future healthcare and social care, and so it should be in the assessments for care packages, equipment and support. This includes in the assessments of wheelchairs; such as a joint wheelchair assessment with a wheelchair services OT, a physiotherapist, an OT specialising in hoists and transferring aids and a CNS tissue viability nurse all assessing the patient at the same time for the right wheelchair, and liaising throughout the process with the patient and their family to find out what they want from a wheelchair, what they’ll want to do with it, what they think the perfect wheelchair looks like and discuss any ideas or changes to plans with the patient/family first. It’s all about teamwork and multidisciplinary/multi-agency working.