Support groups and meeting others

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 Motor Neurone Disease Association, and in  Scotland the Scottish Motor Neurone Disease Association. Most people we talked to had contact at some level with the MND Association or Scottish MND Association, 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 'Talking about - 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 sections can be requested if and when the person feels ready).& nbsp;

As well as written information and the website (www.mndassociation.org), the MND Association provides many other services, including a national advice and information service (MND connect 08457 626262 or mndconnect@mndassociation.org), loan or purchase of equipment, benefits advice, a network of visitors and regional care development advisers, a quarterly magazine ('Thumb Print') and local support group/social meetings for people living with MND and their carers. Local hospices or Carers' Associations may also offer support groups. 

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.

The personal information folder from the MND Association was very useful. At first she didn't want to join any support group meetings but now she and her husband enjoy them.

He advises everyone to contact the MND Association and take up the help and advice available from local branches.

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.

She does not want to go to the day centre at the hospice where she sometimes has respite care. She does not want to meet others with MND or talk about illness.

They want to keep life as normal as possible, and so they chose not to contact a support group.

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.

For the first year Roland did not want to go to a support group. He worried about seeing others, but also that others might be upset to see him because he has PMA.

She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure she wants to join another group, especially with other people with MND.

Going to support group meetings has helped him come to terms with MND. The emotional support and practical information have helped him and his wife.

He was frightened about seeing people whose symptoms had progressed more than his, but in fact it encouraged him to feel he could cope.

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.

Doctors sometimes send newly diagnosed people to meet her. It wasn't always easy to support them at first, but now she has trained as an MNDA visitor.

People who had a more unusual 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. 

As someone with PLS, she felt meeting people with more rapidly progressing forms of MND would be too upsetting, but more recently she has decided to try it.

His 22-year-old daughter felt a support group meeting was not right for her, partly because her symptoms were progressing unusually fast.

Barry found it upsetting to meet others with MND and does not want to share how he feels. Ann wasn't so scared by it.

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 'Talking about - Impact on family carers'). 

She wanted to ask what it would be like for her father as the end approached, but felt it was tactless to ask at a support group with other people living with MND.

She went to a support group meeting, but felt it was more aimed at carers. Exchanging practical tips is valuable, but she doesn't want to see people who are badly affected.

Many people also join www.build-uk.net, an email discussion forum and self-help group for people living with MND, and www.patientslikeme.com, an online community where people share information about their symptoms, treatments and outcomes. (The Patients Like Me site is gradually being expanded to include 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 upsetting, and some had been sad dened when regular contributors died.

Using sites like BUILD-UK and PatientsLikeMe has been a great way to communicate and share information. [Mike is unable to speak].

She values contact through the BUILD-UK site, but has taken a break from it, as she felt MND was taking over her life. She's not sure she'd want face-to-face contact.

She has looked at the BUILD forum. She doesn't want to make friendships with people just because they have the same illness, but she might change her mind.

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