A group shot from the UpLift weekender 2023.

Advocacy Service

Pathfinders is here to support people with muscle-weakening conditions. As well as our advocacy service, we offer a wide range of advice resources, personal experiences, training for personal assistants/carers and for the people that employ them, and research reports.

Pathfinders Advocacy Service

The word ‘advocacy’ comes from the mediaeval latin ‘advocatia’ and literally means ‘to call out for support’. This is what our service is here for.

Sam Cornelius-Light, Advocacy Officer
A picture of Sam Cornelius-Light, who runs the Pathfinders Advocacy Service. Sam is a white male smiling at the camera wearing a green t-shirt.

The Pathfinders Neuromuscular Alliance advocacy service is there for people with muscle-weakening conditions to call out for support, get their voice heard and to give them control over their own lives. Developed by people with neuromuscular conditions, our unique user-led service allows us to combine lived experience with professional expertise. As well as supporting people with muscle-weakening conditions directly, we are also able to support advocacy and advice organisations who have service users with muscle-weakening conditions, or want to know more about the issues affecting the community.

Supporting You

If you are not getting the care and support you need or you don’t agree with decisions that have been made about your care and support, we can support you in challenging these decisions.

Using a person-centred approach and our lived experience, we can support you in the following areas:

  • Continuing Healthcare (securing funding and appropriate care packages).
  • Access to Healthcare (including treatment, specialist services, screening, and mental health support).
  • Social Care (securing funding, appropriate care packages, and care charges).
  • Housing (securing appropriate housing, moving out of the family home, housing adaptations and moving house). 
  • Education (accessing further and higher education, and the support needed to succeed e.g. securing care, disabled students allowance). 
  • Adaptive Technology (accessing funding).
  • Employment (accessing support via Access to Work, securing necessary reasonable adjustments).

We currently provide support via email and online meetings only. Our support includes writing letters of support, providing or helping you find relevant information and giving you the opportunity to explore the options available to you. 

Accessing the Advocacy Service

To access the advocacy service, you need to be a member of Pathfinders Neuromuscular Alliance, and complete our referral form.

If you need any assistance in filling out the forms, simply email us

Supporting Advocacy Services

If your service is working with someone with a muscle-weakening condition, we can help provide letters of support, or discuss the client’s situation and needs, bringing our experience and your expertise together. If you’re interested in knowing more about the issues faced by people with muscle-weakening conditions, we also offer training for advocacy organisations. To find out more, simply email advocacy@pathfindersalliance.org.uk

Become a Member

In order to access our advocacy service, you must be a Pathfinders member. You can apply online today, and it’ll take less than 10 minutes

If you need help filling out your application, you need it in another format, or have any queries, please email us on info@pathfindersalliance.org.uk

Please note: When we are over-subscribed, we may have a waiting list. If we have reviewed your case and do not feel that we are the best service to support you, we will recommend alternative services.

Support Group

Pathfinders Neuromuscular Alliance operates an online peer support group on Facebook for adults diagnosed with muscle weakening conditions. It’s a space to talk, connect, get advice, and make friends.

Our advocacy service is generously supported by the National Lottery Community Fund