Advanced MS Champions programme
Our Advanced MS Champions are guiding care for people facing multiple, complex MS symptoms.
There are more than 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 help those 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 levels of disability.
Why is the Advanced MS Champions programme needed?
The MS Trust estimates that more than 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 Pilot Programme is funding six Advanced MS Champions around the UK.
What is an Advanced MS Champion?
An ‘Advanced MS Champion’ is a specialist health professional (either a specialist nurse or therapist), working as a member of the MS Team whose focus is care for people with advanced MS. This is usually 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.
There is also a robust evaluation around each of the roles to quantify both the impact on people with MS and their families and the financial impact of the roles. We hope to be able to demonstrate that as well as making a very positive difference to people living with advanced MS, Advanced MS Champions also save the health service money and are cost effective to employ.
Progress so far
The first Advanced MS Champion was appointed at Salford Royal NHS Trust in October 2018, and she is already having a big impact on the provision of care for people with advanced MS in the local area. This post has now been made permanent.
There are now six Advanced MS Champions in post:
- Lindsay Lord - Salford Royal NHS Trust (currently redeployed)
- Vacant - Swansea
- Nicola Hyslop - North Cumbria
- Ruth O'Regan - Norwich
- Nicola Hare - Poole
- Tania Burge - Bristol
The MS Trust team are also liaising with MS Specialists who are already working in similar roles to the Advanced MS Champions to learn as much as we can about different ways of working to meet the needs of people with advanced MS.
Over the next two years, the MS Trust aims to demonstrate how the Champions 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 final report of the pilot is expected to be published in spring 2021, and we believe this will make the case for these posts 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.
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Talking advanced MS and Advanced MS champions
5 July 2021
There are over 40,000 people living with advanced MS in the UK, and many can feel invisible to the healthcare system. In this episode we talk to MS Champion Nicki Hare about what life with advanced MS is like and what MS champions do to help.
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