Mobility and movement

Adult social services can provide a needs assessment if you have MND, or a carer’s assessment if you are providing support. The assessment will work out your needs, agree which support services could assist and help you plan for emergencies. Some external support may be necessary, as care needs will increase with MND. To arrange an assessment, contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland. For details, see information sheet 10B - What is social care?

You may also be entitled to a range of benefits and financial support. When making a claim or being assessed, always provide lots of detail about how long things take and any help needed to complete tasks. This is more likely to result in more appropriate support.

We provide information to help or look on www.gov.uk for England and Wales, or www.nidirect.gov.uk for Northern Ireland. See also our web page on benefits and financial support.

You may find our page on how to get the right treatment and care helpful: How can I check if my treatment and care are appropriate? This explains how the NICE guideline on motor neurone disease can help.

For more information, see:

• What you should expect from your care
• 6C - Managing pain
• 10A – Benefits and entitlements
• 10B – What is social care?
• 10D – NHS continuing healthcare
• 10E – Work and MND
• Caring and MND: support for you
• Caring and MND: quick guide

Lots of equipment and aids can help. These are designed to assist with all sorts of physical tasks, including getting around, dressing, washing, and eating and drinking. For example, grab rails or walking aids can help with mobility. In time, you may also want information about wheelchairs.

Always ask your occupational therapist for guidance before buying equipment, as they can assess existing and possible future needs. Not all products suit everyone and it can be frustrating and costly if an item arrives that doesn’t help.

“We have a good occupational therapist and physiotherapist who organise the equipment required, and a good palliative care team who look after our needs.”Person with MND

We can provide support to access equipment from adult social care services or the NHS (statutory services). We also provide certain items on loan or MND support grants where statutory services cannot supply or have waiting lists. For more details about our support, see our services.

For more detail, see information sheet 11C – Equipment and wheelchairs.

Adapting your home can take time and you may need assistance with funding, which can also be a lengthy process. Investigate this as soon as possible if you think it may be necessary.

“Find out about the things you need and plan ahead, so things are in place when needed.”Carer, supporting a person with MND

Try to think about your future needs when looking at adapting your environment or adding major installations. Seek an assessment with an occupational therapist (OT) who can help assess how well your home supports your needs.

For example, a stairlift can be helpful. However, if you use a wheelchair, you may need two with a stairlift – one for the ground floor to transfer onto the stairlift seat, and another upstairs to transfer back out of the stairlift seat and move onwards. Hoists can also help transfers to different rooms, or locations such as chair to bed.

Other choices may help, such as a through floor lift or downstairs room conversion for ease of access. There may be funding to assist with major installations.

See also our page on needs assessment, home care and home adaptations and information sheet  10C – Disabled Facilities Grants

Although MND can make travelling more challenging, there are ways to make this easier. Forward planning can help you find accessible accommodation and transport to meet your needs. Find out what is on offer, and give service providers plenty of notice if special arrangements need to be made.

“Ensure services and providers understand how MND affects you.” Person with MND

For more detail, see information sheets:

• 12C – Travel and transport
• 12D – Planning a holiday
• 8D – Air travel and ventilation for motor neurone disease

By law, you must inform the DVLA if you are diagnosed with MND. This does not mean you have to stop driving, but you may need to take a medical or driving assessment (as your driving needs will be more complex). Expert advice can help you continue driving safely, or travel more comfortably as a passenger, for as long as possible.

“The Motability car has given Dad a new lease of life and so much freedom, so the benefits really do outweigh the costs.” Carer, supporting a person with MND

For more detail, see information sheets:

• 12A – Driving
• 12B – Choosing the right vehicle