In July 2015 Baroness Tanni Grey-Thompson spearheaded the launch of a new charter to improve NHS Wheelchair Services: ‘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 huge variation in quality of services across the UK is astounding and means a huge proportion of wheelchair users are left immobilised, frustrated and ignored.’
Around 1.2 million people – 2% of the UK population – are thought to use a wheelchair, half of whom rely on the NHS Wheelchair Service to meet their mobility needs. “NHS Wheelchair Services are hideously underfunded,” says Alex Rankin, Director of Services at spinal injuries charity Aspire. “The lack of funding causes long delays in accepting referrals and carrying out assessments, which means that wheelchair users are waiting unacceptably long periods before getting their chairs.”
Wheelchair services in England are overseen by local clinical commissioning groups, GP-led bodies that shape and allocate funding to health services in their areas. The NHS Constitution guarantees access to a wheelchair within 18 weeks but NHS figures show that 30% are waiting more than six months and many struggle on for even longer.
The NHS has pledged to halve the number of children waiting more than 18 weeks by April this year and eliminate overly long waits for everyone in 2019. However, a spate of reports suggest that the service is making little progress on these goals and may be deteriorating. An analysis published in the Health Service Journal last year found that 7,200 people between October and December 2016 had to wait 19 or more weeks. The delays were lengthening, with those with the greatest needs experiencing the most protracted waits.
When the wheelchair is finally delivered, many find that it does not meet their needs. According to a survey of first time wheelchair users commissioned by the Back Up Trust, 24% of wheelchair service clients bought a second wheelchair because their first one was uncomfortable. A further 50% said they had purchased a replacement after their needs had changed. The Trust notes that services sometimes waste time and money by overlooking assessments conducted by specialist clinicians and often supply wheelchairs that only meet people’s basic mobility needs, ignoring how the equipment they are providing influences other aspects of the person’s identity.
Poor wheelchair provision can have profound consequences for the lives of disabled people. It is estimated that up to half of all wheelchair users will develop a pressure ulcer at some point during their life caused by an unsuitable chair. For those with mobility impairments, a wheelchair can be a passport to social inclusion, enabling them to participate in family life, pursue an education, socialise with friends and forge a career. Shoddy services risk leaving people stranded, both physically and figuratively as they become stuck in their own homes with few places to turn to for alternative support.
Some people are forced to resort to purchasing a wheelchair with their own money. However, with the cost of many models ranging from between £2,000 to £25,000 – plus any maintenance fees that might need to be paid during the lifetime of the chair – this is not always a realistic option.
A growing number of people are turning to crowdfunding websites to raise the necessary cash. An investigation by The Guardian newspaper revealed that JustGiving saw a fourfold increase from £365,000 to £1.8 million between 2015 and 2016 for amounts raised for wheelchairs. This phenomenon was highlighted at the British Medical Association’s annual meeting last year when Junior Doctor Hannah Barham-Brown spoke about her struggles with the Wheelchair Service as a medical student. Doctor Barham-Brown, who has a rare genetic condition, was forced to wait six months for the NHS to provide her with a wheelchair that was unsuitable before raising funds online.
These inadequacies are not new. A paper trail of the Wheelchair Service’s problems stretches back at least two decades when in 2000 the government’s Audit Commission reported on ‘unexplained variations in all aspects of service provision’ which bore little relation to the needs of local people. Since then, a stream of reports commissioned by public bodies and charities has called on government to reduce waiting times, improve assessments by making sure that they engage with people’s social as well as clinical needs and offer people more choice.
There are signs that policymakers are starting to afford Wheelchair Service the attention they desperately need. Baroness Grey-Thompson’s involvement in recent years has lent a high-profile voice to a cause that has often been sidelined. In 2015/16 the NHS belatedly started to collect and publish data on the performance of Wheelchair Services in a bid to promote greater transparency and better results for wheelchair users. Personal wheelchair budgets have been introduced to give people more control over the purse strings, allowing them to select the wheelchair that will most help them to lead an independent life.
However, there have also been further setbacks. A decision to transfer responsibility for funding specialist wheelchair services for people with the most complex needs from the national to local level has resulted in fragmentation and placed the service in direct competition with other health care spending priorities. This has worsened the postcode lottery as local clinical commissioning groups spend varying amounts on the provision of wheelchairs.
Calls for national standards which might level out some of the uneven provision across the country continues to go unheeded.
The underfunding of wheelchair services has been shown to be counterproductive. For every 182 wheelchair users out of work, the government benefits bill can inflate to up to £1 million, whereas their economic contribution when in work can be up to £4.7 million.
Expect little to change until the NHS learns to do its sums right.
By Clive Gilbert (@CliveGilbert)
Clive is a freelance writer and researcher with a particular interest in social policy, disability and technology. An expert on a range of policy areas that affect the lives of disabled people, Clive works with government and charities to improve services while chronicling the latest developments through his writing.
Clive is the editor of dispATches assistive technology newsletter, you can read this at designability.org.uk/read-assistive-technology-news