Motor Neurone Disease (MND)

Aids, equipment and adaptations for MND

Timely provision of suitable aids and equipment can make a major difference to people's independence and quality of life. Adaptations to the home may help similarly. People used many different aids and adaptations to help with personal care, sleeping, eating and mobility inside and outside the house.

Many people had been impressed by the way staff, especially occupational therapists (OTs), anticipated their needs and arranged for equipment or adaptations just at the right time. 

Some praised their OTs and other staff not just for arranging equipment and adaptations, but gently helping them to come to terms with symptom progression and to accept that they would soon be needing more help. This was hard for many people, because pieces of equipment or changes to their home could be a concrete and unwelcome reminder of their condition. (See also 'Personal care and care support' for experiences of bathroom adaptations, and 'Mobility, arm and leg weakness' for more on experiences of using wheelchairs). 

Several people said they resisted getting equipment or adaptations made until the last possible moment (see also 'Mobility, arm and leg weakness'). One woman (Interview 19) said:

“You get all these aids and they drop all these things off - do your best to battle with the one you've got. And then give in. I know it's giving in, but there'll come a point you'll have to move on to the next one… Battle on best you can, and do what you can with each one.”

Others said they preferred to get things organised in advance. One man said with hindsight perhaps he should have had more home adaptations made straight away rather than waiting until the moment he needed them.

Alongside the many positive experiences of getting aids and adaptations, there were also many criticisms. A common frustration was bad timing - often people felt they had to wait too long for assessments, for decisions to be made, for equipment to arrive or work to be done. Especially when someone's symptoms were progressing fast, it might already be too late by the time the process had been completed. 

Sometimes people complained that the system lacked flexibility and choice, and that sometimes advice was incorrect or inappropriate.

Some said equipment they did not want turned up unexpectedly, or things were provided without discussion of whether they would be useful or suitable for the person concerned. There were some complaints about items that were badly designed or poor quality. For example, one man had been given a grabber, but 'it's about 2 feet too short… I've got to bend over to even pick things up.'

Occasionally people felt they were given things too soon, before they really needed them, and had them cluttering up the house.

While some people preferred to let their OT suggest and choose equipment for them, others wanted to be involved in discussing what would be best for them as individuals, perhaps browsing catalogues for themselves or being told more about what was on the market. Some chose to do their own research, for example looking on the internet or going to disability equipment exhibitions to inform themselves. As one woman pointed out, “You don't have to accept just exactly what you're offered.” However, several said they had often stumbled on useful information more by chance than design. Some improvised their own solutions, including one man who had worked with his OT and physiotherapist to design his own neck brace. Several people felt rules and regulations sometimes got in the way of sensible solutions. One man was angry that he was told he could only have a profiling bed downstairs because it was too heavy to go upstairs, despite an architect's advice that it would be fine. 

Many people had to pay for most of their equipment or for adaptations to the house. This is explored further in 'Finances and benefits'. Sometimes people had chosen to pay for things themselves to avoid a long wait, but others had to pay because they did not qualify for means-tested assistance. The physical constraints of the way their house was designed could raise costs still further, or rule out some possibilities. Some people felt the government ought to meet more of the costs and felt they had had to fight to get what they needed. There were many positive comments about advice and financial help for specific items provided by the MND Association, but several people felt the Association should not have to fill this gap. 

Many people were happy with the equipment and advice obtained privately but it could be a matter of luck - for example one couple had found a swivel seat for the car on the internet, but when they went to their local garage to arrange it the garage staff managed to obtain a seat and fit it for a third of the price. Several people felt private suppliers could charge high prices, and some found alternative solutions, including second-hand equipment and loans. It is important to bear in mind that few private suppliers will have enough experience and understanding of MND to help them advise customers appropriately, so an assessment from a health or social care professional is a good idea.

A range of car adaptations are available both to help people keep driving for longer themselves, and to be a passenger. Motability and local Mobility Centres offer help with driving assessments and car adaptations. Many people were positive about the advice and help received in relation to driving. However, it is vital that people disclose their diagnosis to the DVLA. This may lead to a medical assessment to determine if they can still drive safely and if agreed, this will be reviewed over time.

However, some had had difficulties. One woman who wanted to have her car adapted for hand controls said no-one told her that the car she originally leased through Motability was unsuitable for hand controls and it took 3 months to sort out.

(Anyone who is unhappy with what has been provided through Motability can ask for a reassessment).

The MND Association has a Wheelchair Service that can help people access the right type of chair for neurological needs through statutory services and may be able to provide support with top up features. They also provide MND support grants for a variety of needs, including equipment that cannot be provided through health or social care. Some of these grants need to be applied for by a health or social care professional following assessment. For more detail, see the 'Getting help' area of their website.

They also provide a range of relevant information sheets to assist, including 11C: Equipment and wheelchairs and 12A to 12D on driving and travel. See their information resources on their website.

Many people also find it helpful to contact other people with MND to exchange practical hints and tips and about specific pieces of equipment and improvised solutions. (See 'Support groups and meeting others').

Experiences of computers and communication aids are explored in 'Speech and communication'

Last reviewed August 2017.
Last updated August 2017.


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