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.
Worsening of MS to a point at which it might be described as ‘advanced’ usually happens gradually, although not for everyone.
Symptoms may include walking difficulties (including mobility and balance problems), weakness, spasticity and spasms, tremor, ataxia (lack of coordination), bladder problems, bowel problems and many others.
Carers, who are often family members or partners, play a critical role in supporting people with advanced MS, so their needs are also vital to consider in MS care.
What is the difference between advanced and progressive MS?
Advanced MS refers to the impact of the condition, rather than the type of MS someone has. So people with progressive types of MS may have advanced MS, but not necessarily.
People with progressive MS may be able to work, mobilise independently and undertake most daily activities with minimal help. People with advanced MS typically experience multiple, simultaneous symptoms, require greater assistance to carry out routine tasks, and need support from a range of health and social care services.
Why is the Advanced MS Champions programme needed?
The MS Trust estimates that approximately 40,000 people in the UK have advanced MS.
Our 2016 report Improving Services for People with Advanced MS highlighted that this was an area of specialist MS services that was often neglected. In addition, our 2016 survey of people with MS – Let’s Make MS Care Fair – showed that people with advanced forms of the condition often felt abandoned by services.
“All of a sudden you get a feeling that you’re no longer on the radar and that you’ve been abandoned by those that were previously involved with you.”
“Now that I am secondary progressive, I have been discharged and referred to my GP – nothing else has been offered.”
Demands on MS services are rising. The number of people with MS is increasing and a growing emphasis on complex and monitoring-intensive disease modifying drugs is putting significant pressure on services. As a result, those for whom MS has already had a significant impact often struggle to get the care they need, and MS services are finding it harder to provide equitable care for everyone.
To manage their condition, people with advanced MS require coordinated input from a range of services, as well as expert guidance from an MS specialist. Those with advanced MS experience multiple complex symptoms, so contact with a health professional with experience and specialist knowledge of MS is vital.
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 will an Advanced MS Champion make a difference?
We estimate that during the three-year pilot project the Advanced MS Champion will benefit approximately 5,000 people with advanced MS, as well as their families and carers. People with advanced MS under the care of a champion will be more likely to:
- be able to access the specialist services they need when they need them
- receive specialist help and advice to manage specific symptoms
- experience fewer health complications
- experience fewer MS-related hospital admissions
- be able to stay in their own home
- retain functional independence in areas of their daily life
- ensure there is support for their carers
- achieve the best quality of life possible.
Advanced MS Champions will help to transform the lives of people living with this debilitating and complex condition, as well as supporting the wellbeing of informal carers. The costs of the posts will be offset in part by the reduction in NHS emergency hospital admission costs for MS.
Thanks to our 2017 fundraising collaboration with the October Club, the MS Trust was able to set this transformational programme in motion.
How does the programme work?
1. Oversight of the programme
The MS Trust has set up a focused Working Group and a larger Steering Committee of health and social care professionals, and other experts including people with MS and carers, to help us make sure we get this right and do the best we can for people with advanced MS. We will work closely with these two groups throughout the pilot phase, discussing our plans, sharing feedback and results and finding solutions to challenges which arise.
2. The pilot and selecting teams to work with
The pilot for the programme will run for three years from early 2018, working with champions in six sites across the UK. For the pilot, the MS Trust will select these six sites, which will be chosen to reflect a variety of organisations, geography, demography and setting (eg. community or hospital-based).
3. How the programme will work and the involvement of the MS Trust
- the MS Trust funds 90% of each Advanced MS Champion post for 15 months
- the NHS Trust/Health Board and MS Trust sign an agreement that the NHS organisation will offer a permanent contract to the champion following the 15 months
- the NHS Trust (or Health Board) pays the remaining 10% of the champion’s post
- the MS Trust supports the professional development of the champion, providing mentorship, education and access to resources
- the MS Trust provides support for the service development of the whole MS team
- the MS Trust evaluates the effectiveness of the role following the 15-month programme.
4. After the pilot
Following the three-year pilot, the MS Trust will evaluate the posts and assess the value and impact of the role for people with advanced MS. We will use what we learn to continually strive for the best care possible for people with advanced MS.
It is anticipated that following the pilot the programme will be rolled out more widely across the UK. It is also expected that during the pilot, Advanced MS Champions will develop various tools, resources and models of working that we can share with MS teams across the UK, which will help MS healthcare professionals make a difference to people with advanced MS.
5. How MS teams can get involved
During the pilot phase, the MS Trust will be selecting sites to work with to ensure that we have a mix of MS services across the UK and different models of care. However, if you would like to be considered as one of the sites do let us know.
We will also be sharing tools and resources that develop as a result of the project, and will be looking for MS teams to pilot these for us.
How you can help us deliver the Advanced MS Champions programme
There are a number of ways our supporters can help us deliver this vital project:
- raise money to support our Advanced MS Champions
- sign up for latest news about the project and its developments
- we will be evaluating the impact of the programme and one of the ways we will do so is by obtaining feedback from people with MS and carers through a survey. If you receive this, we would appreciate your opinions and time taken to complete the short questionnaire.