There are more than 40,000 people with Advanced MS in the UK, living with multiple and complex symptoms.
The MS Trust report 'MS Forward View' highlighted the number of services unable to offer assessment and treatment intervention for people with progressive MS. Too often, these people miss out on support from health and social care, and often rely on family for care.
The MS Trust is working to create and support more Advanced MS Champion roles across the UK in response to this unmet need. The first AMSC was appointed in 2018.
An ‘Advanced MS Champion’ is a specialist health professional (either a specialist nurse or therapist), working as a member of the MS Team and focusing on care for people with advanced MS. This is usually a Band 7 MS ‘specialist practitioner’ role – someone with highly specialist knowledge and assessment skills. Training for MS specific skills can be provided through the programme.
What an Advanced MS Champion does:
Assess and implement treatment for People with Advanced MS (PwAMS).
Coordinate care across different services. Ensure 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 PwAMS and their families. Help them understand their condition, manage symptoms and identify problems.
Help people with Advanced MS live as independently as possible, improving their quality of life.
The MS Trust Advanced MS Champions Programme offers a comprehensive package of support for your team.
It includes funding up to 80% of the cost of each Advanced MS Champion post for 15 months and support for the professional development of the new Champion, providing mentorship, education, and access to resources.
The AMSC programme also includes a robust evaluation to quantify both the impact on people with MS and their families and the financial impact of the roles. In our Pilot study we showed that the AMSC role improves the lives of people with Advanced MS and produces significant cost savings for the NHS.
You can read more about our Pilot study and the initial AMSC sites here.
If you would like to find out more about our AMSC programme, please contact us on hpteam@mstrust.org.uk.
We will collect some initial information via an online form. Then we will organise a meeting with the key stakeholders to discuss your service and any unmet need in your area.
Next you will complete a scoping document. Based on the data collected, we will work with you to decide which programme will work best for your service.
The MS Trust will collaborate with you to develop a business case to apply for an additional substantive AMSC post. Once this has been approved, we will expect a letter of intent from your NHS Trust. We will then create and sign a collaboration agreement, financial schedule and financial agreement. Then we will support you as we move through recruitment.
Once an AMSC is in post they will be mentored by our Head of Professional Services Tania Burge. This mentorship will include help with the role and regular quarterly check-ins. The new AMSC will receive a fully funded place on our Development Module. They will also receive a fully funded place at our Annual Conference.
The AMSC will collect data and case studies over the 15 months, that we will use to report on the success of the post. Your site will also have access to the MS Trust’s GEMMS project data collection tool.
If you would like to find out more about the programme, please contact us on hpteam@mstrust.org.uk.
“I'm really excited to have started working in the Advanced MS Champion role. I’m getting to know patients and their families or carers, and hopefully improving their quality of life. Being able to see people at home will make a big difference to the support that the MS service in Leeds can offer.”
Sarah started in post on 2 September 2024.
“Having been an MS Specialist Nurse for the past 12 years I’ve been privileged to care for many people living with MS in all stages of their journey... In this role, I will support people living with advanced multiple sclerosis by providing them with regular contact in their own homes and clinics if appropriate.”
Rachel started in post on 24 April 2023.
After the 15 months of 80% funding from the MS Trust, this post was made permanent.
Our AMSC pilot study started back in 2018.
Along with the new AMSC posts, the majority of the pilot posts have been made permanent. This highlights the necessity and value of the Advanced MS Champion role and the excellent work these health professionals do in supporting people with advanced MS.
Read more about how to apply to become an AMSC partner site.
If you have any questions or would like to talk through the role, please contact us at hpteam@mstrust.org.uk – we would love to hear from you!
