Putting MS specialists at the heart of MS care

Putting MS specialists at the heart of MS care

Geraldine Mynors reports on progress in our campaign to make sure everyone affected by MS can access the best possible specialist case

For the past year 11 teams of MS specialist nurses and therapists have taken part in the MS Trust’s GEMSS (Generating Evidence in MS Services) programme. They have been collecting data about the service they offer people with MS, so that we can make the best possible case for the value of their work. Our task now is to bring the data together into evidence which we hope will influence the shape of NHS services to come.

Unique insights

Between them the teams have a caseload of about 13,000 people with MS – that’s over 12 per cent of people with MS in England and Scotland. By working with them we’ve gained unique insight into how MS services work on the ground, what makes services most effective, and the challenges of working in different parts of the NHS. We’ve already used GEMSS data to develop a capacity-planning tool for MS specialist nurses, and to publish our recent report MS specialist nursing in the UK: the case for equitable provision.

Over the past two months, the GEMSS teams have analysed their data and written up local reports. The reports provide evidence about what the MS specialist nurse teams do and the value they add, as well as making local recommendations about how their services can be improved and strengthened. Some of the recommendations they have come up with include:

• delivering more group education courses on topics like symptom management and fatigue management
• making contact with people who have been out of contact with services for some time
• improving the efficiency of their outpatient clinics (improving reminder systems so that slots aren’t wasted, for example).

The MS Trust will be supporting teams in taking forward these recommendations. In some cases, the services have well over the MS Trust recommended maximum sustainable caseload of 358 people with MS per MS specialist nurse, and so they are going to use the data that they have collected to make the case for an increase in the number of MS specialist nurses.
We will be using the GEMSS data to create a national report, to be published in November, which will highlight the findings of the GEMSS programme and present the evidence for the value of MS specialist nurses.

Initial findings

One of the tools we developed with the GEMSS teams is a survey of people with MS. The survey was designed inpart to capture the experience and views of people with MS on the value and impact of their MS specialist nurse service. Around 1,250 people responded to the survey and we’re now analysing the overall data. Some of our initial findings are:

• MS specialist nurses are the profession that people with MS consult about their MS more than any other.
• Nearly one-fifth of respondents had seen neither an MS specialist nurse nor a neurologist in the past year, and so will not have received the specialist annual review recommended by NICE.
• People with MS reported a wide range of positive benefits from having an MS specialist nurse. However, around a quarter of respondents said that their MS specialist nurse hadn’t helped them in the past year. 10 of 11 GEMSS teams have than the MS Trust recommended sustainable caseload, so it’s clear that more nurses are needed in places.

This article is part of the August 2015 issue of Open Door, the MS Trust’s quarterly newsletter.