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Crowdfund my wheelchair

An alarming trend seems to be developing on the number of people who are being refused a wheelchair by the NHS and are having to resort to other means including crowdfunding in order to get the wheelchair that they need. Having to turn to the public to finance their mobility needs is not going down well and we read that this trend is a building one and has been since 2014.

The good news is that it seems that this wheelchair scarcity has been recognised and there are now plans to turn the situation round. Just last month, medical practitioners at the British Medical Association’s (BMA) annual meeting all agreed and unanimously passed a motion calling for wheelchair users to have “timely access to chairs suitable for their individual conditions”. This is after a number of warnings that cuts in services, a postcode lottery of availability and delays means that disabled patients are finding it increasingly difficult to get wheelchairs from the NHS.

Much of this was triggered by a junior doctor named Hannah Barham-Brown who found herself in the position of having to fund her own wheelchair two years ago. It was this that caused her to rise the profile of this problem and bring it to the attention of the BMA.

“When I tell people I had to Crowdfund for a wheelchair, they are gobsmacked,” says Dr Barham-Brown who is 29. She was diagnosed with Ehlers-Danlos syndrome (EDS) in 2015 during her time at medical school. “I kept dislocating my knees,” she says. Within six months, she needed a wheelchair. However after going to see her GP, she was told that NHS wheelchair services would only offer her a heavyweight basic wheelchair or a £140 voucher towards another wheelchair.  As Barham-Brown’s condition means that using a manual chair would dislocate her joints if she tried to push herself along then an electric wheelchair was the only option and that was going to cost upwards of £2,000.

Thanks to a friend help she used crowdfunding to raise the £2000 that was needed to purchase a suitable electric wheelchair and this enabled her to continue her studies and complete her course. This did however cause a great deal of distress “Without a chair, I knew I wouldn’t be able to do this job I’d trained so hard for. I wouldn’t be able to be a doctor”. “It’s the basic tenet of the NHS: you have a need and it’s met. But it isn’t,” she says. “People are housebound and trapped in their homes. Yet nothing is being done.”

CCG's or locally CP led clinical commissioning groups are ultimately responsible for securing and funding wheelchair services and the NHS is now working with the National Wheelchair Leadership Alliance (set up by Paralympian and crossbench peer Tanni Grey Thompson in 2015) to review the situation regarding the provision of wheelchairs through the NHS “to develop best practice standards as well as introducing personal wheelchair budgets to give people more choice on the best wheelchair for them”.

And there is change on the way already, during the next 12 months all CCG's in the country are scrapping the wheelchair voucher scheme and introducing far more suitable personal budgets for wheelchairs, a scheme which is more individualised and is based on an assessment of their individual needs and goals.

In addition further progress is being made by the setting up of a national data collection scheme which is gathering data on the efficiency of wheelchair services in England. “The national data collection is a massive step forward in terms of understanding the needs of wheelchair users and what equipment is, and can be, provided,” explains Grey-Thompson. “However, in reality, it’s going to take some time for the information to be universally gathered and useful across the whole of England. This should be of a high priority in order to be able to provide the right equipment.”

We know that this issue has been getting worse for some time now and we hope that as wheelchair users these positive signs are sufficient to ensure that the right types of wheelchairs are made available to all users whether they be manual or self propelled wheelchairs or for those who cannot propel themselves electric wheelchairs and powerchairs.