New MS Trust report highlights gaps in MS services


16 November 2018

Here at the MS Trust we believe that everyone with MS should have access to an MS specialist nurse. MS nurses are vital for people living with MS. They can help them adjust to diagnosis, consider complicated treatment options, manage a wide range of symptoms and learn to live well with an unpredictable, often debilitating, lifelong condition. For many, MS nurses are a lifeline but, sadly, we know that many people are missing out on the vital care and support they provide, simply because there are currently not enough of them.

A new report recently published by the MS Trust has found that up to 105 new MS specialist nurses are required to ensure everyone with MS in the UK can access the specialist support they need and deserve. Although the research shows that there has been a welcome increase in the number of whole time equivalent MS nurses over the past two years (up 4% to 250 from 241), up to 77% of people with MS are living in areas where MS nurses have caseloads in excess of a new sustainable caseload figure of 315. Of those people, nearly a quarter (26,000) live in areas where caseloads are twice the recommended level.

The current recommended caseload figure for MS specialist nurses is 358, but independent research commissioned by the MS Trust and conducted by Professor Alison Leary found that as MS services and the demands on MS nurses have changed, this number is just no longer sustainable. Many MS nurses do a fantastic job, going above and beyond what is required of them. But as they become more and more stretched, increasingly nurses are finding they don’t have the time to focus on some aspects of care, things like psychological care, symptom management and DMD management.

The report recommends a caseload figure of 315 patients per MS specialist nurse to ensure people with MS are not missing out on support.

Jo Sopala, director of health professional programmes at the MS Trust, said:

The landscape has changed significantly since our last MS Nurse mapping exercise in 2016. We now have more disease modifying drugs being made available, more requirements for complex monitoring and many MS nurses carrying out non-specialist work. Whilst we welcome the increase in the number of nurses shown in the 2018 census, the increasing complexity of the role and the additional tasks MS specialist nurses are expected to take on, mean that even more MS nurses are needed. As a consequence of this, the number of people with MS living in areas that don’t have enough MS nurses is growing

So, what is the MS Trust doing about it? We believe that nobody should have to manage MS alone, so through our pioneering Specialist Nurse Programme we are funding MS nurses in the areas of greatest need. We have already funded new MS nurses in Leicester, Lanarkshire, Bradford, South Tees, Lothian, Hull and North Lincs and Goole, and we will be announcing more areas in the coming months. We also provide training to all MS nurses in the UK, ensuring they have the skills and knowledge to provide the best possible support to you.

We know there’s a long way to go to achieve our goal. But, with your support, we will keep fighting to ensure everyone with MS has access to specialist support.

You can read the full report here. Alison Leary’s full report into MS nurse caseloads will be available in the new year.