Wheelchair users to launch challenge to improve NHS service
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Version 0 of 1. A wheelchair campaign group led by Tanni Grey-Thompson is launching a charter on Monday calling for an improvement in wheelchair provision. The Wheelchair Leadership Alliance, set up earlier this year, will present a 10-point document in parliament to politicians, providers and manufacturers, urging them to commit to the development of an effective NHS wheelchair service. The alliance says that delays in service cause waste and harm to wheelchair users. Lady Grey-Thompson, an 11-time Paralympic gold medal winner, said: “For too long wheelchair services have been inadequate and it is time that wheelchair users are listened to and provided a proper service, rather than being marginalised.” The baroness, who plans to sit in a wheelbarrow outside parliament on Monday to demonstrate how little use the wrong type of wheelchair is, said the variation in quality of services across the UK was astounding. “A huge proportion of wheelchair users are left immobilised, frustrated and ignored,” she said. “Now we want to get this issue on the radar of people who can influence change and also get them behind the campaign by urging them to pledge their support to the charter.” The pledge includes 10 commitments, including equality of access and provision irrespective of age or postcode; regular reviews with the wheelchair user or their carer; recruitment of qualified staff; and assessments for all wheelchairs within a nationally mandated timeframe. Fiona Carey, 54, who is a patient representative for the alliance, said the aim was to persuade the 209 clinical commissioning groups in England – which are responsible for organising the delivery of most services funded by the NHS – to put wheelchair provision at the top of the agenda. The organisation says the charter outlines principles it believes are crucial in allowing wheelchair users to live their lives to their full potential. “The whole system needs to be picked up by the scruff of the neck and shaken,” said Carey, who previously worked in publishing and higher education, became a kidney cancer patient in 2001 and has been a wheelchair user since 2011. She said her wheelchair basketball teammates had had a litany of problems as a result of their badly fitted chairs, and that carers had developed bad backs from heaving wheelchairs in and out of cars. There was huge variation in service across the country that could sometimes seem like a postcode lottery, she said. Official numbers of wheelchair users in the UK are not collated, but the total is thought to be about 1.2 million – 2% of the UK population – according to the alliance. The whole system needs to be picked up by the scruff of the neck and shaken Figures show 70% of patients wait more than three months for a wheelchair, while 30% face a delay of more than six months. About 15% of patients wait more than 12 months. Wheelchair users with muscle atrophy, a condition in which the muscle wastes away, often face severe delays to receive their chair, according to Muscular Dystrophy UK research. For every 182 wheelchair users not able to work, the benefits bill can be up to £1m, according to the NHS website. But the positive economic contribution made when wheelchair users are in work can be as much as £4.7m, figures show. ‘Having the right wheelchair is not a privilege, it’s crucial’ Imagine you’re 17. Your parents are probably still treating you as if you’re 12 and you’re probably unreasonably annoyed with a friend, or stressed about an essay you don’t want to write. So to get away from it all, you go out, catch a bus and meet a friend for coffee. Except, of course, if you can’t. At 17, I was still relying on a manual wheelchair that left me unable to move more than about 100 metres on my own, and then only on completely flat surfaces and very slowly. Due to the nature of my cerebral palsy, I am simply not strong enough to achieve any more. I’d left the search for a powerchair for so long because of their prohibitive cost and the knowledge that getting any help from the council would be a nasty uphill battle. I was right. A particular low-point came when, after hundreds of phone calls and a few disastrous meetings, a particularly mean-spirited social worker told me that my ability to move indoors meant I did not need a new chair; being housebound at 17 was apparently acceptable. I managed to ask her how she would have felt if someone had told her that at my age, before bursting into tears. Months of frustration just caught up with me. And it got worse. One of the features I was desperate for was the ability to raise my chair so I could reach things and be closer to people for proper conversations; things that I knew would give me independence but which the NHS didn’t provide. So we decided to access the voucher scheme, advertised on direct.gov, in which the wheelchair service gives you a value for the price of a standard chair so that you can top it up privately and get the chair you need. But inexplicably, my council didn’t provide vouchers. Cue another few months of emailing and calling, and many more tears. Eventually, almost a year after I applied for a powerchair, I was able to order the right one for me. It changed my life. I am still not fully independent, but I feel free. I am immensely grateful for my motors, which have allowed me to have a true university experience. But I am also painfully aware of how lucky I was that my parents could fight my corner and top up the money from wheelchair services. Not everyone can say the same. But no one should have to: having the right wheelchair is not a privilege, it’s crucial. Just imagine being stuck inside at 17, and you’ll see what I mean. Lucy Webster |