Access to wheelchairs
Motor neurone disease (MND) is a progressive neurological condition that can cause, among other symptoms, muscle wasting and fatigue. This can lead to mobility problems, including difficulty walking. As the condition progresses, most people with MND will need to use a wheelchair.
Referral to the local wheelchair service, which will be provided by the NHS or Health and Social Care in Northern Ireland (HSCNI), should be made by an appropriate health or social care professional, in line with local policy. An assessment will then determine whether or not the person with MND needs a wheelchair and, if they do, the most appropriate wheelchair for their needs.
Because MND is a rapidly progressive condition and the lead times for the statutory provision of wheelchair services can be lengthy, a timely referral to wheelchair services is critical. Someone with MND should be referred to wheelchair services when they are starting to experience mobility problems and are willing to accept the need for a wheelchair.
Statutory funded wheelchair services can be accessed by anyone with mobility problems (adult or child) and some will prioritise people with MND.
In England, assessments are offered by the NHS through approximately 150 wheelchair services.
In Northern Ireland, assessments are carried out through the Department of Health, Social Services and Public Safety (DHSSPS) Wheelchair Service.
Across Wales, assessments are offered by the Artificial Limb and Appliance Service via three Artificial Limb and Appliance Centres.
Once someone has been referred to wheelchair services, the request will be triaged to determine the priority for an assessment. The assessment will cover the person’s postural and mobility needs, and will consider the person’s home and the local environment where the wheelchair is to be used. It should also consider how the wheelchair is to be transported and how the user’s needs may change in future.
A wheelchair assessment should also take account of whether there is someone available (for example a carer) to push a wheelchair and load it into a car if needed and, if so, whether that person is physically able to do this. If an unpaid carer has a medical need of their own, or there is no carer in place at all (paid or unpaid) options may include providing the chair with an attendant control at point of issue, or exploring funding for the addition of a power pack.
The assessment may include an eye test, although not every wheelchair service will require this.
Time from assessment to provision can be several weeks, therefore consideration needs to be given to current and future needs, to ensure the wheelchair continues to meet these needs.
How wheelchair services are specified and/or commissioned varies across the country, which results in local differences in referral processes and eligibility criteria. Where there are currently differences, this can affect the type of wheelchair a service can provide at any given time in the course of someone’s disease progression. NHS England is working with National Wheelchair Leadership Alliance to address this.
Some people choose not to wait for a wheelchair to be provided by statutory services, or do not realise they may be eligible for wheelchair provision. This could lead to an inappropriate wheelchair being purchased privately without an assessment from an appropriate healthcare professional. Timely referral to wheelchair services is therefore critical.
Since April 2017 all clinical commissioning groups (CCGs) in England have been expected to develop personal wheelchair budgets to replace the wheelchair voucher system. The aim is to support people’s choice of wheelchair, either within the NHS or with third party organisations, or using private funding to purchase a wheelchairs that would fall outside of normal statutory provision.
More information can be found at Personal wheelchair budgets (NHS England)
An assessment of clinical need is still carried out for those who access a personal wheelchair budget. It is important to discuss all the options as some arrangements can involve the person with MND being responsible for maintenance and insurance costs.
Some services may not be able to provide certain types or aspects of a wheelchair due to commissioning criteria, and alternative funding may need to be sought for that specific aspect.
A wheelchair may be issued from the stock available at the wheelchair service. Alternatively, it may need to be ordered from a supplier. Funding for wheelchairs may already be in place, but processes vary and in some cases it may need to be sought before an order is placed.
Once received from the supplier, the wheelchair will be adjusted to suit the individual and then the person with MND will be shown how to use it. For electric outdoor wheelchairs, they should also be given information about insurance and a road safety test may be completed.
Waiting times for ordered wheelchairs will depend on whether the chair is a standard order or made to measure. However, the Powered Neuro Wheelchairs have been designed to suit the needs of those with progressive neurological conditions and, because they come as standard order chairs that are adjusted to the individual on arrival, the wait for a suitable chair is reduced.
All wheelchairs provided by statutory wheelchair services will be serviced and maintained as past of the provision. Arrangements may be different with other providers. In this case the person with MND should be told who to contact if there is a problem with the wheelchair.
If the provided wheelchair no longer meets the needs of the person with MND, they should be able to self-refer back to the wheelchair service for a reassessment. This may include a change of accessories or chair, for example, from a manual to a powered wheelchair.
The MND Association funds three specialist wheelchair services based in Carshalton, Leeds and Oxford. The specialist therapists based at these centres may be able to provide support to local wheelchair services, through training, joint assessments, advice and support to find the right wheelchair solutions for people with MND. If the person with MND experiences any problems accessing a specialist assessment or obtaining an appropriate wheelchair, email us or contact MND Connect.