Motor Neurone Disease (MND)

For many people diagnosed with a serious condition, voluntary support groups and self-help organisations offer valuable help in many different ways. The best-known support groups for MND in the UK are the MND Association supporting England, Wales and Northern Ireland, and MND Scotland. Most people we talked to had contact at some level with the MND Association or MND Scotland, especially to obtain information. Hospital neurology departments normally tell people about the MND Association soon after diagnosis, and many hand out MND Association leaflets. Most people were very positive about the information received, although a few found it too negative or too overwhelming at first. These views are discussed in more detail in 'Information needs'. (The MND Association stages the information provided to allow people to absorb it in their own time and at their own pace. Additional resources can be requested if and when the person feels ready).

As well as written information and their website, the MND Association provides many other services. Their helpline, MND Connect, provides information and support to people living with or affected by MND. They also provide guidance to health and social care professionals about MND.

Some people wanted only information and advice, especially when first diagnosed, while others looked for active involvement with support groups. Some said their views about this had changed or might change over time.

Many people had doubts about meeting other people with MND at social events. Some were put off by the whole idea of group activities. One woman explained, “I'm not a day centre person” and others too said it was just not their sort of thing.

Others were more concerned about how they would cope emotionally with seeing other people with MND, especially those whose symptoms had progressed further than their own. Several said that people living with MND had such varied symptoms and needs that they were unsure what they could learn from each other. One man was also worried it might upset others to see him, because he has PMA which tends to progress more slowly. But some people wanted to encourage others to overcome their worries about this and stressed how supportive and reassuring they found the groups. Some were surprised that the meetings could be cheerful, not depressing.

Some people liked the possibility of exchanging practical advice, even though they might find it upsetting to see others with MND. As one man said, “Discussing problems, I don't find much of a help. Discussing solutions, I do.” For some, helping and advising other people was as much of a reason to go to meetings as getting support for themselves. One woman trained as an MND Association visitor.

People who had a common form of MND such as progressive muscular atrophy (PMA) or primary lateral sclerosis (PLS) often wondered if support groups would be appropriate for them. They worried about whether they'd be upset to see people with faster progression than themselves, but also whether their presence might upset other people too. However, some found when they got there that they still had plenty in common with other people there. (See Roland, Interview 17 above). Similarly, some thought support groups might not suit younger people, although one young man in his early twenties was keen to go because he'd never met anyone else with the condition. 

Some local branches run separate meetings for carers, but often meetings involve both carers and individuals with MND at the same event. Many people liked this. One carer said she found it, “Quite humbling that you are with these fellow travellers, people you would never otherwise have met or been friendly with in your life, but who are on a shared journey.” But a few mentioned problems with joint meetings. (See also 'Impact on family carers'). 

The MND Association hosts an online forum for all people affected by MND. This provides a safe and popular forum where people can share experiences and support each other with the challenges of living with the disease. Many people also join build-uk.net (magimedia.co.uk/buildforum), an email discussion forum and self-help group for people living with MND, and patientslikeme.com, an online community where people share information about their symptoms, treatments and outcomes. (The Patients Like Me site includes communities for people living with other conditions). Being able to contact others over the internet was valued both by people with mobility problems who found it difficult to travel to support groups, and by people with speech problems. Some people felt it was less emotional than meeting people face-to-face. However, people still had differing views about how much contact they wanted. One person found the personal photographs posted on build-uk.net upsetting, and some had been saddened when regular contributors died.

For more experiences of help provided by support groups, see also sections on 'Information needs', 'Aids, equipment and adaptations', 'Speech and communication', and 'Finances and benefits'.

Last reviewed August 2017.
Last updated August 2017.