Equipment for daily living
The main avenue for provision of wheelchairs is wheelchair services. You can be referred to them by your specialist clinic, GP, physiotherapist, occupational therapist etc. Wheelchair services can carry out full seated positioning assessments and to ensure that your wheelchair provision is comfortable and appropriate.
They will often only provide one model or brand of wheelchair per area, and if for whatever reason this doesn’t suit your needs or preferences, this can be quite challenging. There are now schemes whereby if you want to purchase a different wheelchair, wheelchair services can give you a voucher towards the cost of it equal to the cost of the NHS provision of your wheelchair. You can then put this towards purchasing whatever wheelchair you would prefer to have, but this often leaves you responsible for maintenance and upkeep.
If you do not have a car through the Motability scheme and do have Personal Independence Payments (PIP), you may be able to apply to the Motability scheme to fund a wheelchair. This is often good if you do not need specific custom positioning equipment on your wheelchair, but where wheelchair services will not provide a chair that can do everything that you want. In this scenario, they will take a portion of your Personal Independence Payments to cover the cost of the chair.
If you are in employment, and need a wheelchair for issues specifically related to employment, you can sometimes get funding from Access to Work. They will typically fund up to 5/7 of a chair, if you could argue that it is specifically a work-related need (e.g. you need a powered wheelchair rather than the manual wheelchair offered by wheelchair services as you need to travel independently for work). They will also sometimes fund part of a chair if the NHS is funding another part. In order to qualify you either need to be in employment, or self employed and earning above approximately £6000 a year. You can also then apply to Motability to fund the other two sevenths of a chair, even if they are also funding a car for you.
If you are raising money towards the cost of your chair, the Joseph Patrick Trust does equipment grants towards the cost of various equipment. You can apply to them for funding for part of the cost of a new wheelchair.
Many people also fundraise for a chair amongst friends and family, and with fundraising events.
If you require help with personal care from your bed, need a raised bed to stand up from, or cannot sit yourself up independently you might benefit from a ‘profiling bed’, which electronically changes your position from lying to sitting, and raises the bed for personal care. These are often provided by the district nurses, though in some areas social services or the continuing healthcare team can also become involved in offering you one.
There are various types of profiling bed, including some that go into a position known as trendelenburg or reverse trendelenburg. If you need to spend a lot of time sitting upright in your bed, or if it is difficult for you to move up or down your bed independently, this setting raises or lowers one end of the bed, to make it easier to slide you around the bed.
There are also systems known as sleep systems. These are provided by the occupational therapist, and include Symmetrikit sleep system, Hugga, and Leckey. These are designed for people with complex positioning needs, and the manufacturers suggest that they may be able to improve comfort, reduce contractures, and potentially even reduce the need for corrective surgeries. They work by holding your body in a specific position and supporting you during sleep or when you are in your bed.
You can also get turning systems. If you are unable to turn yourself independently in bed, there are specific hoist slings designed to go underneath you, whereif you can press a button, you can lift one side of yourself, turning you in bed. There are also ones that go under your mattress. While these can reduce your dependence on night-time support for turning and skin integrity, if you have full sensation (as most people with neuromuscular disorders do) it is possible for these to leave you in a very uncomfortable position.
There are various types of mattress that are recommended for people with less movement, people who are very underweight, people who are very overweight, or people who are otherwise at high risk from pressure sores. Once you have a pressure sore, it can be very difficult for it to heal, so it is advisable to prevent one developing. Mattresses to prevent pressure sores are often accompanied by profiling beds, and both can be provided by the district nurse.
The first level of pressure sore prevention is usually provided by a high specification foam mattress. This will be made of a specific type of foam, cut into a pattern. This helps reduce pressure by evenly distributing your weight as far as possible over a low pressure surface. If you have never had a pressure sore, or have only had minor ones, this is what is likely to be recommended.
If you need better pressure sore prevention then this, the next step is often a hybrid mattress or a mattress overlay. This will go over a foam mattress, and usually involves a mains powered box that inflates and deflates cells of air on your mattress. This means that the constantly moving levels of pressure against your skin, and times when each part of skin is completely offloaded, by deflating cells in the mattress.
If you are at high risk of pressure sores and especially if you have had previous pressure sores, it is often advisable to have a complete circulating air mattress. One of these has sections that slowly inflate and deflate, redistributing the pressure on your body. These are often less comfortable than the foam or the hybrid mattresses, but are far better at pressure sore prevention.
It can be difficult to find the right pressure to inflate an air mattress to, in order to ensure that you are as comfortable as possible. Don’t be afraid to ask to try lots of different options before deciding on final settings for your mattress and bed.