Peer Support
Communities for emotional and practical support
Review status: Waiting for team review. An AI editorial check was completed on 2026-08-14 by claude-opus-5. It checks clarity, attribution and scope against the sources, and it is not a Compass team or clinical sign-off. Waiting for clinical review. Last updated 2026-08-14.
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Planning 3
- Decide what kind of support feels rightSome people prefer groups, some prefer one to one, and some prefer reading other people's experiences.Why it matters: There is no single right form of support, and the one that suits you is the one you will keep using.
- Choose one safe place to startPick one community or service rather than trying several at once.Why it matters: Starting in one place keeps this manageable at a time when very little else is.
- Plan when to check inPick a moment to revisit this, such as after a change in symptoms or care.Why it matters: What helps changes over time, and tying the review to a real change stops it being indefinitely postponed.
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Peer support means connecting with other people who understand ALS/MND from the inside. That includes others living with it, caregivers, and families who are walking a similar path. It is different from professional support: it is the help that comes from shared experience.
ALS/MND can feel isolating. The people around you may be very loving, but they may not fully grasp what it is like. Connecting with others who do can be a real source of strength.
What people say helps:
- You feel less alone. Simply knowing others understand, without needing to explain, can lift a weight.
- Practical, lived wisdom. Peers often share tips and "things I wish I'd known" that are hard to find in a leaflet. This can cover equipment, daily life, navigating services, and more.
- Hope and perspective. Seeing how others cope, adapt and still find good in life can be genuinely encouraging.
- A place for honesty. With people who get it, you can voice fears and frustrations you might hold back elsewhere.
- Support for caregivers and family too. Peer support is not just for the person with ALS/MND. Caregivers and families often find huge value in connecting with others in their position.
- Mutual benefit. Many people find that helping others, and sharing what they have learned, is meaningful in itself.
Peer support comes in many forms. These include groups, one-to-one connections, and online communities (covered next), so you can find what fits you. And it is entirely your choice: some people find it transformative, others prefer other kinds of support, and both are completely fine.
This card is about connecting with peers and community. For professional emotional and mental health support, see the mental health support card; for family conversations and caregiver coordination, see those cards. The next question looks at the kinds of peer support available.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 4. People living with ALS/MND commonly feel isolated and cut off from others.
Supports this. ALS Mental Health — Your ALS Guide · Practical guide
Says that feeling isolated and disconnected is a common part of living with ALS, and treats staying connected with others as part of looking after mental health.
“When living with ALS, it is not uncommon to feel physically or emotionally isolated and disconnected from others.”
Staying Connected with OthersLink checked August 2026
Statement 2 of 4. Being among people who already understand the condition can reduce the feeling of being alone with it.
Supports this. ALS Support Groups — Your ALS Guide · Practical guide
Describes an ALS support group as a chance to be with people who understand what you are going through day to day, and says this helps you see that you are not alone.
“They can help give you a new perspective on your situation and realize you are not alone.”
ALS Support GroupsLink checked August 2026
Statement 3 of 4. Seeing how other people are coping with ALS/MND can be encouraging.
Qualifies this. 'All in the same boat'? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND) — Social Science & Medicine · Research review · 2010
An interview study with people who have MND and their carers. It found that seeing others coping well can give hope, but also that most people are shocked and saddened by seeing others with the condition, so encouragement is only one side of what happens.
“However, most people are also shocked and saddened by seeing others with the condition.”
AbstractLink checked August 2026
Statement 4 of 4. Peer support exists for caregivers and family members in their own right, not only for the person with ALS/MND.
Supports this. Family and Friends Support a Loved One with ALS — Your ALS Guide · Practical guide
Says ALS organisations run support groups for caregivers, family and friends as well as for people with ALS, in person and online.
“ALS organizations across the country coordinate support groups (virtual and in-person) for people with ALS, caregivers, family, and friends.”
For Family and FriendsLink checked August 2026
Used across the whole answer
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Peer and community support comes in many forms. You can find something that suits how you like to connect, and what is accessible for you. The specific groups and services depend on where you live, but the common kinds are:
- Support groups. Gatherings of people affected by ALS/MND, in person or online. Some are for people with the condition, some for caregivers, some for both or for families; some are general, others focused (for example, young people, or a particular situation).
- One-to-one peer connections. Being matched with another person living with ALS/MND, or another caregiver, for a more personal connection. Some associations run "buddy" or mentoring schemes.
- Online communities and forums. Places to connect any time, which can be ideal when getting out is hard, energy is limited, or you prefer to connect from home. These range from association-run forums to social media groups.
- Association events and programs. Many MND/ALS associations run meet-ups, activities, webinars, and family days that bring people together.
- Local community and faith groups. Broader community support, which some people value alongside ALS/MND-specific connections.
A few things to consider when choosing:
- In person vs online. Online options remove travel and can be easier on energy and as mobility changes; in-person can feel more personal. Many people use both.
- For you, or for your caregiver/family. There are often separate spaces. It can help for each person to have their own support, as well as shared ones.
- General vs specific. Some people prefer a broad group; others value one matched to their situation.
- Accessibility. Look for options that work with your communication and mobility needs. For example, some groups are experienced in including people who use communication devices.
You do not have to commit to any one thing. It is fine to try a few and see what fits. The next question covers how to find peer support that suits you.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. ALS/MND support groups run both in person and online, and different groups are aimed at the person with the condition, at caregivers, or at families.
Supports this. Family and Friends Support a Loved One with ALS — Your ALS Guide · Practical guide
Says ALS organisations coordinate support groups in both formats and for each of those audiences.
“ALS organizations across the country coordinate support groups (virtual and in-person) for people with ALS, caregivers, family, and friends.”
For Family and FriendsLink checked August 2026
Adds context. ALS Support Groups — Your ALS Guide · Practical guide
Lists real examples of audience-specific and topic-specific online groups, which shows what the split between audiences looks like in practice. The organisations named are United States based, so they are examples rather than a global picture.
“ALS Network hosts a variety of free online support groups for specific audiences and topics (caregivers/loved ones, veterans, trach and vent, LGBTQIA+, bereavement, in Spanish, etc).”
ALS Support GroupsLink checked August 2026
Statement 2 of 2. The person with ALS/MND and their caregiver or family each have support needs of their own, so each may need their own support as well as anything shared.
Supports this. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline makes two separate recommendations, one for the person with MND and one for family members and carers, so that each is offered sources of emotional and psychological support in their own right.
“Offer family members and/or carers (as appropriate) information about respite care and sources of emotional and psychological support, including support groups, online forums and counselling or psychology services.”
1.6.4Link checked August 2026
Used across the whole answer
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Finding the right peer support is usually straightforward once you know where to look, and you can try a few things until something fits.
Good places to start:
- Your MND/ALS association. This is usually the best first stop. They run or know the support groups, online communities, one-to-one schemes, and events where you live, and can match you to what suits you.
- Your ALS/MND team or social worker. They can point you toward local support and make introductions.
- Online communities. Association-run forums and reputable groups let you connect from home, any time, which is helpful when energy or mobility is limited.
- Other people you meet. At clinic or through the association, connections sometimes form naturally.
Tips for finding a good fit:
- Try before you decide. It is fine to attend a group once, or read a forum for a while, to see if it feels right. It is also fine to move on if it does not.
- Look for the right space for you. That might be for the person with ALS/MND, for caregivers, or for families; general or specific; in person or online.
- Check accessibility. Make sure a group can include your communication and mobility needs.
- Start small if that feels easier. A single online conversation or one-to-one match can be less daunting than a big group.
A note on staying safe online: it helps to know who runs a community and whether it says it is moderated. Communities run by an MND/ALS association usually make both clear. In open social media groups, where anyone can post, be a little more cautious. Be wary of unproven "cures" or anyone promoting products or asking for money, and check anything medical with your team. (The supplements/experimental and research cards cover evaluating claims.)
If you are not sure where to begin, contacting your MND/ALS association and simply asking "what peer support is there for me?" is a great first step. The next question is for anyone who finds peer support difficult, or feels it may not be for them.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. A local ALS/MND association runs or knows the support groups and online communities available in your area.
Supports this. ALS Support Groups — Your ALS Guide · Practical guide
Tells readers to go to their local ALS organisation to find out what support groups exist near them, in person and online, and lists association-run online groups that can be joined from anywhere.
“Ask your local ALS organization about in-person and online support groups in your area.”
ALS Support GroupsLink checked August 2026
Supports this. ALS Mental Health — Your ALS Guide · Practical guide
Names finding a local ALS organisation as one of the building blocks of a support network, because it can provide support, connect you to resources and answer questions.
“It is also important to find a local ALS organization that can provide support, connect you to resources, and answer your questions.”
Developing a Strong Support NetworkLink checked August 2026
Statement 2 of 2. Your ALS/MND team is expected to point you toward sources of emotional support, including peer support groups and online forums.
Supports this. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline puts this on the clinical team: it tells them to offer people information about where emotional and psychological support can be found, and names support groups and online forums as part of that.
“Offer the person information about sources of emotional and psychological support, including support groups and online forums.”
1.6.2Link checked August 2026
Used across the whole answer
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Peer support helps many people. It does not help everyone, and not at every moment. If you feel unsure, reluctant, or have tried it and it did not feel right, that is completely valid. There is no obligation to connect with others, and it does not mean you are coping badly.
Common, understandable reasons people find it hard:
- Seeing others further along can be upsetting. Meeting people whose ALS/MND has progressed more can stir fear about the future. This is a recognised reason people step back. It is a real one. Some people find it helpful to know what may come; others find it distressing. Both reactions are normal.
- You may not feel ready to be in an "ALS/MND space", especially early on, or you may want to keep some parts of life separate from the condition.
- Group settings are not for everyone. Some people simply prefer private, one-to-one, or professional support.
- It can feel like a lot on top of everything else.
Things that can help:
- Choose the format that feels safest. A one-to-one connection or quietly reading an online community can be gentler than a live group.
- Dip in and out. You can engage when it helps and step away when it does not. Support is there when you want it, not an obligation.
- It is okay to step back from a group that leaves you feeling worse, and try something different.
- Consider other kinds of support. Professional counselling (see the mental health support card), talking with trusted friends or family, or your faith or community can all provide emotional support instead of, or alongside, peer support.
The point of support is to help you feel better, not worse. If something is not doing that, it is right to change it. What matters is that you have some support that fits you. It can take any form. The next question offers prompts and starting points.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. Peer support does not suit everyone, and how much a person wants it can change over the course of the illness.
Supports this. 'All in the same boat'? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND) — Social Science & Medicine · Research review · 2010
An interview study with 48 people with MND and 22 carers. It found that some people deliberately keep away from peer support, and that how involved people are shifts over time as their needs and fears change.
“Levels of involvement may change over time as people struggle with their changing needs and fears.”
AbstractLink checked August 2026
Adds context. ALS Support Groups — Your ALS Guide · Practical guide
A patient guide that says plainly that support groups do not suit everyone, while still suggesting people try one before deciding. It is practical guidance rather than the evidence for the statement.
“Support groups are not for everyone, but we encourage you to attend at least once and see if it is for you.”
ALS Support GroupsLink checked August 2026
Statement 2 of 2. Meeting people whose ALS/MND has progressed further can raise fear about a person's own future.
Supports this. 'All in the same boat'? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND) — Social Science & Medicine · Research review · 2010
Found both sides of this. Seeing others coping well gave people hope, but most were also shocked and saddened by seeing others with the condition, and some stayed away from groups precisely to avoid seeing what might lie ahead for them.
“Choosing isolation can be a deliberate defensive strategy, to protect oneself from witnessing one's possible future.”
AbstractLink checked August 2026
Used across the whole answer
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If you would like to explore peer or community support, here are some questions to ask and simple ways to begin. There is no pressure. Take whatever feels right.
Questions for your MND/ALS association, team, or social worker
- What groups, one-to-one, or online peer support is available for me where I live?
- Is there separate support for my caregiver and family?
- Are there options I can access from home, or that work with my communication or mobility needs?
- Could you connect me with someone else living with ALS/MND, or another caregiver?
- Are there association events or communities I could join?
Easy ways to start
- Contact your MND/ALS association and simply ask what is available. They are used to this and will help.
- Try one thing. Read an online community, join one session, or have one conversation. These are all low-commitment first steps.
- Bring someone if a first meeting feels daunting.
- Encourage your caregiver to seek their own support too. It matters for them as well.
Remember:
- It is your choice how, when, and whether you connect. You can change your mind.
- It is fine to try and step back, or to prefer other kinds of support entirely.
- The aim is connection that helps you feel supported. Find what does that for you.
If peer support is not what you are looking for, the mental health support card covers professional emotional support, and the family communication and caregiver coordination cards cover support closer to home.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 1. Caregivers and family members have emotional support needs of their own that should be asked about and met.
Supports this. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline treats the emotional impact on family members and carers as something the team should actively ask about, and has a separate recommendation to offer them their own sources of emotional support.
“During multidisciplinary team assessments and other appointments, discuss the psychological and emotional impact of MND with family members and/or carers (as appropriate), and ask whether they have any psychological or social care support needs.”
1.6.3Link checked August 2026
Used across the whole answer
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