Why we’re launching an ambitious project to make sure everyone affected by MS can access the best possible care – and how you can get involved
MS care is changing. Last year saw a new consensus on treatment for people with relapsing remitting MS. This recommends that people with relapsing remitting MS receive treatment with a disease modifying drug (DMD) as close as possible to diagnosis. It also recommends that treatment should be closely monitored, and, if there are still signs of disease activity, a switch to a different, more effective treatment should be considered.
This new approach to treatment is the latest step in 20 years of progress in treating people with relapsing remitting MS, which has seen new drugs become available and specialist MS services developed. However, implementing this approach is likely to be extremely challenging.
From our work with MS specialist teams we know that MS nurses, neurologists, physiotherapists, occupational therapists and other health professionals do a brilliant job and are hugely valued by people with MS. However, we also know that many specialist nurses, for example, have to manage far larger caseloads than is ideal or sustainable.
The new recommendations for MS treatment are likely to put even more pressure on MS specialist services. Somehow already stretched services will have to find more time to administer and monitor drug treatment for more people.
Fair and equal access
We also know that around half of the people living with MS in the UK – around 50,000 people – have progressive forms of MS, and there are no DMDs currently licensed for progressive MS. If specialist services are increasingly focused on drug treatments, will these people miss out on vital care? We know that people with progressive forms of MS have complex needs and really benefit from access to multidisciplinary MS teams comprising physiotherapists, occupational therapists and others. How do we make sure that they can access these services when they need them?
MS Forward View
These concerns about the future of MS care, and making sure that everyone affected by MS has equitable access to MS specialists, are the reason we are beginning a new project: MS Forward View.
We’re going to be working with MS specialists, NHS managers and commissioners and people with MS to find ways to make the best use of resources and skills to make sure specialist services work for everyone.
In particular, we want to look at how MS services currently work, what mix of professionals works best at delivering care for people with MS, and how we might measure what equitable care looks like in practice.
At the end of the project we will produce an action plan for improving access to MS care which we hope will be adopted by services across the UK, and result in a better deal for everyone affected by MS.
This is a hugely ambitious project and we can’t achieve it alone. We’ll be working closely with MS teams across the country. In this issue of Open Door we meet the Tayside MS team, based at Ninewells Hospital in Dundee. They include neurologists, specialist nurses, a GP, a physiotherapist and a social worker, and were the winners of our inaugural QuDos award for multidisciplinary MS team of the year. We found out how they make a difference for people living with MS and how they think we can respond to new challenges.
How you can help
We also need your support. We want to hear about your experiences of MS care – how you’ve benefited and what you’ve found challenging. We also want to hear your views about practical changes that could improve your service.
We also need help spreading the word so we can get the input of as many people affected by MS as possible. Find out about all the ways you could get involved with MS Awareness Week. With your help we can make sure that everyone affected by MS can get the best possible care.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
Roxy's journey to diagnosis
16/05/2022 - 00:00
Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that others don’t face the same challenges when receiving a diagnosis.
Lis' MS journey: one woman and her bike
04/05/2022 - 00:00
In May 2022, Lis will be heading off on her 5,000 mile cycling challenge. She shares how the idea came about and discusses why the support of the MS Trust was invaluable following a multiple sclerosis diagnosis.
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