Driven by the findings of our ambitious MS Forward View project, which found that many people with advanced MS lose contact with MS specialist services as their condition gets worse, in 2018 we launched our Advanced MS Champions Programme with the promise to bring much-needed support to those who need it the most.
Since 2018, it’s been full steam ahead to ensure that promise is met. The first Advanced MS Champion, Lindsay Lord, was appointed at Salford Royal NHS Trust in October 2018, and the second and third Champions, Leanne Walters and Nicola Hyslop, started last summer in Swansea and North Cumbria, respectively.
We are now delighted to announce that our fourth and fifth Advanced MS Champions have started in post. Nicola Hare will cover the Poole area, while Ruth O’Regan is based in Norwich. Ruth and Nicola will bring invaluable support to people living with advanced MS in these areas by coordinating care across different services inside and outside the NHS, working across boundaries in the NHS and social care to ensure more joined-up care, and helping people with advanced MS, as well as their families and carers, to understand their condition and manage symptoms. Recruitment is ongoing for our sixth Champion and we will bring news on this as soon as we have it.
We spoke to Ruth O’Regan about what she’s looking forward to most about her new role: “I’m looking forward to having the time to spend with patients,” Ruth told us. “All too often we are too rushed, so it’s nice to have the opportunity to sit with them and listen to their needs and work more holistically with them.”
In November 2019, we brought all five of the Champions together for an away day. This gave them the opportunity to discuss best practices, challenges and to exchange helpful tips for overcoming problems. Denise Middleton, who has worked as an Advanced MS Clinical Specialist in central and North West London for around 20 years, led a Q&A session, which enabled her to impart her years of experience in the field.
At this meeting, we were also thrilled to announce that Lindsay Lord has had her role at the Salford Royal NHS Foundation Trust made permanent. The positive impact her role has had on the region is highlighted in the evaluation of her first 15 months in post. This showed savings to the NHS of almost £250,000 through the avoidance of hospital admissions, with 79 potential admissions avoided through Lindsay’s interventions.
Other areas showing significant improvements as a result of Lindsay’s role were reduced GP visits, reduced medicine budgets, preventing patients moving to continued healthcare funded placements and overall increased wellbeing of people with advanced MS.
We are in the process of measuring the impact of all of the Champions, so watch this space for the full evaluation soon.
Advanced MS Champions
Our Advanced MS Champions programme funds specialists to provide guidance and coordinated care for some of the UK's 40,000 people with advanced MS – who too often miss out on specialist MS care.
Advanced MS: Your questions answered
If MS is affecting your ability to move around, perform day to day tasks, and you’re dependent on others for some or all of your care and support needs, it may be that your MS is advanced. Our Advanced MS Champion Lindsay Lord, who is based in Salford, answers some of your questions about living with advanced MS and the support that’s available to you.
Living with advanced MS
What is advanced MS? In this section we look at the realities of living with advanced multiple sclerosis, who can help, and sources of support for carers and people living with advanced MS.
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