Action for ME's Mentor ME project contained a lot of important learning about the value of a structured peer support approach.
Action for ME are pleased to share the learning from our five-year project, Mentor ME (this link will take you away from our website). This was funded by the ALLIANCE’s Transforming Self Management fund. Volunteer peer mentors in the project provided structured peer mentor support to people with M.E. and their carers. The learning from this project is contained in a Guide (this link will take you away from our website) to setting-up local peer mentor support for people with M.E./CFS. Hard copies can be posted out, email Avril at firstname.lastname@example.org or call her on 0775 324 7099.
Although this guide is aimed at people with M.E./CFS it is likely it will be helpful for people with a range of long term health conditions especially any energy limiting conditions.
Throughout we used a strengths/asset base approach as this is what the participants told us worked best for them. People said that having a peer mentor who understood difficulties arising from M.E. and could acknowledge and validate their experience was a real boost. Having that understanding from a peer went a long way to helping people feel less alone and isolated. Being able to listen well is key to developing that understanding. We all think we are good listeners but all too often we are listening till we can speak.
I realised that it is hard to listen well, as we may find out something uncomfortable. For many of us we want to offer a solution and feel useful. However, it can be more useful to stay silent and learn from our discomfort about what we need to change. It can be easy to make assumptions and not check out what is actually happening for the other person.
Many of the mentors came to volunteer to share their experience, knowledge and learning about living with M.E. So there is a tension with listening to people, recognising their difficulties and not just moving on to share what you already know, before the other person has had a chance to really express themselves and start to consider their options.
This meant that the mentors must have a space to share this experience with others and other ways of channelling their experiences. This is why working in a project like this is so nourishing and validating for people as they can not only support people one-to-one but get to share their knowledge with a wider audience. For many people with M.E. their health needs prevent them from engaging in the activities they want to do so to have a role in supporting others changes their idea of who they are and what they can do.
Supporting people to listen well is built on a culture of valuing what people have to say. Even if it is difficult to hear. Action for ME have been doing this for 30 years. Many people with M.E. feel unheard and unacknowledged so we continue to raise their voices in our work. People who are self-managing a health condition need the opportunity to speak and be heard and it is a vital part of our work that we listen well to what they say.