‘My GP agreed I should get a wheelchair and this would help me. It should have been the hardest part, but actually, it got worse.’ The story of junior doctor Hannah Barham-Brown’s struggles with the NHS wheelchair service in England which produced an unusable wheelchair after a six-month wait will resonate with many who have had similar experiences at the hands of the country’s largest provider of wheelchairs.
Dr Barham-Brown’s speech to the British Medical Association’s recent conference paved the way for a unanimous vote for the association to adopt ensuring patients have timely access to suitable wheelchairs as a priority in its work with NHS England and other bodies.
The decision follows reports of growing waiting lists for equipment and families launching appeals on crowdfunding websites so that they can buy their own wheelchairs, having given up on the health service.
A fragmented service
Rising budgetary pressures on the wheelchair service resulting from broader cutbacks to public services are frequently cited as a strain on provision.
Recent reforms transferring responsibility for commissioning wheelchairs from the national to the local level have also fragmented funding for the service and put it in direct competition with other priorities, creating a postcode lottery that is acutely felt by those who require the most expensive wheelchairs.
Data acquired in March by the Health Service Journal revealed that 7,200 people who received a wheelchair between October and December last year waited at least 19 weeks. Waiting times appear to have significantly lengthened in the past year despite pledges to bring waiting lists down. Two-fifths of adults with high or specialist wheelchair needs waited more than nine months for their needs to be met.
While the condition of NHS wheelchair services seems to have deteriorated, its problems stretch back well over a decade. In 2000, the Audit Commission published a report on equipment provision in the NHS and social services in England and Wales that uncovered variations in services that bore little relation to underlying levels of need and found that service development was informed by local customs and practices, rather than a strategic understanding of the contribution they could make to the overall wellbeing of the populations they served.
Solutions advocated over the past two and a half decades have consistently referred to the need to reduce waiting times, adopt a more holistic approach to the prescription of wheelchairs that takes in social, educational and developmental outcomes as well as the client’s health, and improve how services are managed at the local level.
There are some signs of positive change. For example, NHS England has committed to providing assistance to local commissioners to help them understand local services and to improve the training of staff. It has also started to collect information on services around the country to help it identify levels of activity and need, explore the possibility of integrated health and social care assessments and create practical user guides for service users and carers.
The Wheelchair Alliance was established in 2015 under the leadership of the Peer and former Paralympian Baroness Tanni Grey-Thompson to campaign for the adoption of a 10-point charter aimed at reinvigorating services.
Time to shift gears
However, progress remains slow and the indications that things are getting worse suggest more radical changes might be needed.
The inclusion of wheelchairs along with other assistive technology related community services in the NHS is a major achievement that recognises the contribution that personal independence and participation in wider society can make to an individual’s wellbeing. Furthermore, the expertise of health professionals will always be vital to their work. But these services have limited contact with other services that form an equally important part of the support infrastructure that encircle clients and their families.
By providing assistive technology in healthcare contexts; we risk skewering the way these services are delivered toward the medical model of disability, neglecting their wider social dimensions.
One approach to creating a more holistic wheelchair service would be to establish new regional bodies that operate between the NHS and local authority social services. The service could integrate professionals from other assistive technology specialisms such as communication aids and even mainstream services like education, employment and housing support. These interdisciplinary teams would have a mission to support their clients’ social wellbeing as much as their health.
Dr Barham-Brown approached her GP for help because her condition was affecting her ability to do her job, only to be offered a wheelchair that was so unwieldy that it stifled her independence rather than facilitating it. Wheelchair services will continue to be hamstrung by outmoded bureaucratic structures until they are updated to meet our twenty-first century aspirations for disabled people.
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