Our Advanced MS Champion Pilot Study

Our report MS Forward View identified that many MS services were unable to offer assessment and treatment to people with progressive MS. There are more than 40,000 people with advanced MS in the UK, who are living with multiple complex symptoms, and often rely on family for care.

With the help of a generous donation from philanthropists The October Club, the MS Trust was able to launch a pilot study. We placed six specialists in Advanced MS in MS teams around the country, including both rural and urban settings. We supplied 90% of the funding for the new NHS posts for 15 months, and recruited two nurses and four therapists to fill them.

These advanced MS specialists were known as Advanced MS Champions or AMSCs. We mentored the new AMSCs and supported their teams to integrate the new roles. Each site was rigorously evaluated and we collected data to demonstrate the impact of the pilot study.

Our report on the AMSC pilot study was published in 2022.

Nicola Hyslop - North Cumbria

Nicola began her role as an AMSC in 2019, she operates a service in North Cumbria that looks after the most complex cases of MS in her area. During this time, she has made a significant impact on MS care in her region, enhancing the patient experience and reducing unnecessary hospital admissions by her timely interventions.

Knowing that there is a quality specialist service available has given me reassurance and confidence to live an independent life.

Nicola's patient

Lindsay Lord - Salford

Lindsay was our first AMSC and started in 2018. Lindsay reached out to find people with MS who had not had specialist assessment or support in years. By delivering proactive, holistic care and working across boundaries to coordinate and develop care pathways, she has brought people with advanced MS back into the service and made a marked contribution to MS care around Salford.

I have found that I have benefited from you greatly.  Before you came along, I was basically left to my own devices. I had not really any support. I was rarely seen by district nurses plus I had other health issues including mental health. Now I have peace of mind and can't thank you enough.

You have now put services in place for me like district nurses, and also reviewed my meds and changed other things for the better. What you did for me in the first few weeks I think was phenomenal and mean it from the bottom of my heart. That's truly how I feel.

Lindsay's patient

Ruth O'Regan – Norwich

Ruth is a physiotherapist who became our 5th AMSC in 2020. In her first year she helped to reduce the number of people with advanced MS needing to go into hospital by over 20%. By caring for and supporting these patients at home she prevented them needing to endure the stress of a hospital stay and saved £107K for the NHS.

Ruth focused her service on respiratory pathways for advanced MS and implemented changes  to improve education around respiratory problems and treatments.

A big thank you to you for all the help you have given me. Since then so much is happening for everything I’ve been asking for.  A big thank you!!

Ruth's patient

Leanne Walters- Swansea

Leanne was the second AMSC to be appointed in June 2019 and was a physiotherapist by background. Leanne coordinated care for people with advanced MS across different services, and provided specialist, proactive and individualised care to people with advanced MS and their families, helping them understand their condition, manage symptoms and identify problems.

I have felt like a weight has been lifted every step of the way since Leanne has been there to support our family. It’s not just dad that couldn’t have coped without her, it’s all of us.

Family member of Leanne's patient

Tania Burge – Bristol

Tania is a physiotherapist who was appointed as our final AMSC in 2020. Tania has brought much-needed care to people in the local area living with the complex and often devastating symptoms that characterise advanced MS, as well as providing support to families and carers.  This post succeeded in reducing unplanned hospital admissions and improving the quality of life of patients with advanced MS.

The role of the ASMC is worth its weight in gold. There are so many people involved in my mother’s care all focusing on different parts of her body rather than treating her as a whole person. This role oversees all the areas and supports her with many professionals involved. This role is needed more than ever when someone has such complex disability.

Family member of Tania's patient

Nicola Hare - Norfolk

Nicola was recruited as an AMSC for Poole in December 2019. Within her first 15 months in post, Nicola was able to increase the number of appointments delivered to people with advanced MS by 228%. This helped 26 people avoid a hospital stay, which equates to an annual cost saving to the NHS of £126,828.

Since I have accessed this service, I have felt a sense of complete support, relief and comfort. I have had a number of health issues that have caused various problems with my MS. Nicola has supported me all the way, and I don't think I could have managed without her support. I no longer feel at a loss with my condition. Nicola’s service is invaluable to myself and other individuals dealing with MS.

Nicola's patient

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