The Coalition for Personalised Care (C4PC) is delighted to welcome Pathfinders Neuromuscular Alliance (Pathfinders) to our network.
Pathfinders is a user-led organisation providing information, promoting independence and campaigning for change for adults with muscle weakening conditions.
Aiming to give a voice to the Neuromuscular community, Pathfinders supports people living with muscle weakening conditions or Neuromuscular Diseases (NMDs) – this support often extends to families and carers. In addition, the charity raises awareness amongst clinicians and other professionals and has collaborated on a number of projects.
Pathfinders has strong links to other Neuromuscular charities such as MDUK, SMA UK, Duchenne UK, Action Duchenne and DFSG. Through this network and its own members and supporters, Pathfinders brings a wealth of first-hand experience from users of the health and social care systems.
Sarah Rose, Trustee Co-chair of Pathfinders, explained that “As a charity, we feel it’s important to not just point out where improvements are needed but to come to the table with suggestions or solutions.”
Pathfinders recognises that C4PC is well-placed to influence and shape health and social care practice as it moves forward into a post-pandemic operating model, and is pleased to be able to call on the knowledge and connections the Partnership provides.
“We hope the Coalition will help us further our campaign calling for hospital settings to recognise Personal Assistants and carers as essential providers of personal care for those with complex care needs.
“Joining C4PC will amplify our ability to have a say in matters of health and social care that affect our community, especially at such a pivotal moment of change in the NHS,” Sarah said.
Kim Ryley, C4PC Chair, confirmed that “Pathfinders’ focus on positivity and highlighting best practice dovetails with C4PC’s approach of supporting and sharing the work of organisations that are doing Personalised Care well.
“There is huge scope for Pathfinders’ members and supporters to contribute to the Coalition’s ongoing discussions about the importance of co-production and including voices of lived experience in Personalised Care delivery,” Kim added.
We look forward to introducing Pathfinders at upcoming Partner events. In the meantime, if you would like to find out more about Pathfinders’ campaign work and upcoming events, please visit their website.