Our Advanced MS Champions will guide care for people facing multiple, complex MS symptoms.
There are 40,000 people with advanced MS in the UK and they too often miss out on support from health and social care, and often rely on family for care. Our Advanced MS Champions will help the people who need it most.
What is advanced MS?
‘Advanced MS’ describes the scale of impact that MS is having on an individual, rather than the type of MS they have.
People with advanced MS have:
- multiple, ongoing and often complex symptoms which may occur simultaneously
- dependence on others for some or all care and support needs
- significant disability.
Why is the Advanced MS Champions programme needed?
The MS Trust estimates that approximately 40,000 people in the UK have advanced MS.
MS Trust research has found that many people with advanced MS report losing contact with MS specialist services as their condition gets worse, and have to rely on informal care from family and friends, and sometimes have to manage the condition alone.
Thanks to funding from city philanthropists The October Club, the MS Trust launched a transformational three-year programme to change that. The Advanced MS Champion Programme will fund six new Champions, over a three-year period, in select locations across the UK.
What is an Advanced MS Champion?
An ‘Advanced MS Champion’ is a specialist health professional, working as a member of the MS Team whose focus is care for people with advanced MS. This is a Band 7 MS ‘specialist practitioner’ role – someone with highly specialist knowledge and understanding of the needs of people living with advanced MS and their families.
An Advanced MS Champion will:
- coordinate care for people with advanced MS across different services, ensuring timely referrals to relevant health and social care professionals
- work across boundaries within the NHS and social care to implement change and ensure delivery of joined-up care
- provide specialist, proactive and individualised care to people with advanced MS and their families, helping them understand their condition, manage symptoms and identify problems.
Crucially, they will help people with advanced MS live as independently as possible and improve their quality of life.
How does the programme work?
The Advanced MS Champions Programme offers a package of support which includes funding 90% of the cost of each Advanced MS Champion post for 15 months, with support for the professional development of the Champion, providing mentorship, education and access to resources.
Progress so far
The first Advanced MS Champion was appointed at Salford Royal NHS Trust in October 2018, and we are about to recruit the second champion in Cumbria. We are working with other sites throughout England, Scotland and Wales and hope to see a third Champion in post by summer 2019.
Over the next three years, the MS Trust hopes to demonstrate how the Champions can make a real difference in delivering efficient, equitable and joined-up MS services that work for people with MS and save the NHS money by reducing emergency hospital admissions. The charity believes this will make the case for these roles to be rolled out across the NHS so that no one has to manage MS alone.
If you are interested in the programme or would like to help support this vital project please contact us.
Generating Evidence in MS Services
We collected evidence about how services work best for people with MS and developed tools to build the skills and capabilities of MS nurses.