Support specialist nurses for people with MS

Dec 19, 2012

Fighting the corner for MS nurses

Since the first MS nurses were appointed back in the 1990s, the MS Trust has been at the forefront of developing the MS nurse workforce. We believe that everyone with MS should have access to a specialist nurse. However, with the NHS currently needing to make big savings, the future of MS nursing in the UK is at risk and so we've had to take a tough look at how best to defend nurse posts against cost-saving measures.

As well as the obvious benefits specialist nurses can bring to people with MS, research has proven that they can actually save the NHS money. By making sure people with MS get the right care at the right time, MS nurses often prevent unnecessary hospital admissions and doctor consultations. But in order to secure funding for specialist posts when budgets are tight, commissioners need hard evidence that this is happening in practice - something many nursing services just don't have.

To tackle this problem head on, the MS Trust is working with four MS nurse teams across the UK to find the best ways to gather the evidence they need. We're arming nurses with tools to collect data as part of their regular routine and the skills to use that data to show how their services are making a difference. Once we have completed this initial stage, our GEMSS project (Generating Evidence in Multiple Sclerosis Services) will be rolled out to MS nurses across the UK. By understanding how to capture strong evidence of their quality and cost-effectiveness, MS nurses will be in a much better position to secure their services over the long term.

"Specialist nursing roles are very valuable and no one wants to see them go - you just have to make it 'easy' for people to say yes to employing them, based on real data" - Commissioner

In a recent survey of 58 specialist nurses, two thirds believed better data would help them defend against potential threats or cuts. Three quarters of them felt that they would be able to provide a better service if they could properly evaluate what they're doing. 90% of the nurses surveyed were interested in using the tools from our GEMSS project within their own services.

"The GEMSS programme has been an extremely useful tool for evidence, to highlight to others what our role entails. I feel privileged and inspired being part of the project." - MS nurse and GEMSS project participant

We will continue to fight for MS nurses and assist them in defending and developing their own services, but we can only do this with your support. Thank you very much for supporting this vital work. 


Sep 25, 2012

An ever changing world in MS care

MS is a complex diagnosis with an often fluctuating, variable and unpredictable pathway. This presents unique challenges to the health and social care professionals who work with people living MS. The impact of this complexity and uncertainty cannot be overstated.

MS specialist staff must keep up-to-date with the changing evidence-base, best practice, statutory guidance and therapies available to people living with MS. At present we are able to provide a limited number of study days and if more money were available, we would be in a stronger position to respond to new research findings. For example, research this year has shown that anxiety and depression are highly prevalent in people with MS, indicating that their mental health needs could be better addressed. The MS Trust would like to be able to develop an evidence-based master class in order to ensure that staff are better placed to address the mental health needs of people living with MS.

A relatively new factor that further complicates the support offered to people with MS is the creation of ‘neurological specialist’ services and posts. Where previously an MS specialist was available to people living with MS, they have in some instances been replaced with a ‘neurological specialist’ whose caseload is much wider than MS and incorporates other neurological conditions (Brain Injury, Parkinson’s Disease, Alzheimer’s, Epilepsy, Huntington’s Disease, MND, Spina Bifida, etc). The MS Trust already receives requests from some of these neurological specialists to attend some of the MS specialist master classes and study days but at present we are unable to meet this need.

Increased funding would allow us to develop and deliver a 3 day development module to ensure that neuro-specialist staff have the skills and knowledge required to support people living with MS and recognise their unique requirements amongst a wide and varied caseload.

We are grateful for your continued interest in our work to support MS specialist nurses and we look forward to updating you again soon.


Jul 5, 2012

The value of MS nurses - GEMSS project launched

GEMSS nurses
GEMSS nurses

In April 2012, the MS Trust launched the GEMSS project - Generating Evidence in Multiple Sclerosis Services - a year long project that will help to generate evidence about the tremendous value of MS specialist nurses.   Since the first MS nurses were appointed back in 1993, their role has grown and there are now some 270 MS specialist nurses around the UK.  The MS Trust has been at the forefront of developing the MS nurse workforce, providing specialist training as well as a competency framework which describes the range of skills and knowledge that they need to be effective.


People with MS consistently say how important MS nurses are in helping them to manage the complex range of issues with which they have to deal.  Neurologists and GPs also acknowledge how valuable they are in freeing up doctor time and in providing specialist expertise.  But despite this, MS specialist nursing in some areas is under threat.  There are still parts of the UK without a nurse, or where the travel distance to the nearest nurse is too far.  And more worryingly, in today's climate where NHS budgets are tight, some posts are not filled when people leave.


In 2010-11, the MS Trust commissioned a study to assess the evidence for the value of MS specialist nurses.  The result was a report, Defining the value of MS specialist nurses, which found that MS nurses are short on robust evidence to show that their services are cost-effective, and that more work is needed to prove this to those who fund NHS services.   The report also maps the nurse post around the country and shows how patchy coverage is.


The GEMSS project is the response to this work.  Four MS nurse teams, representing 13 MS specialist nurses, have been selected to take part.  They are based in Dorset (Poole Hospital and Dorset Disability Action), Sheffield Teaching Hospitals, Dudley Group of Hospitals and Northumbria Healthcare.   The teams reflect the broad range of different MS nurse teams around the UK: acute Trust and community based, urban and rural, large and small.


In May, the teams came together for the first time, outside Sheffield, for an initial training workshop.   The project will give the nurse teams involved the skills to measure the impact of what they do and demonstrate this clearly.  In addition, it aims to leave a lasting legacy for MS nurse services more generally by developing a set of common quality indicators and data collection for MS nursing services - including a new patient survey.


Vicki Matthews, an MS specialist nurse in Southampton for many years and nurse adviser to the MS Trust said, "This project is developing tools and information that I wish I'd had 20 years ago that would have helped me greatly in my job".  Tracy Dean, the newly appointed MS nurse in Dudley, said, "Even though we're from different places, we've all got the same passion, and same desired outcomes for our services".   And Cheryl King, MS nurse at Poole Hospital said "As a specialist service we can be quite isolated.  Coming together it's reassuring to see we share the same problems".


Amanda Cheesley, Long Term Conditions Advisor at the Royal College of Nursing and part of the GEMSS project steering group, said, "At a time when all NHS spending is in the spotlight, it is vital that the value of specialist nurses is clearly articulated, so that these roles which are so important to improving the lives of people living with long term conditions can be supported and built upon.  We welcome the launch of this innovative project by the MS Trust."


Projects like this can only happen thanks to the generous support we receive from people who donate and fundraise on our behalf. Thank you for helping us to fight for MS specialist nurses.

Mar 26, 2012

Making the case for specialist MS services

As the new Director of Service Development for the MS Trust, I am delighted to be part of an organisation that is so dedicated to supporting people with MS. It is a challenging financial time in the NHS and things are changing fast. MS specialist nurses and therapists need to keep making the case for the value of their services and the MS Trust is supporting a number of projects that aim to secure MS specialist services for the future.

The MS Trust has recently produced a report Defining the value of MS specialist nurses. This report assesses the case for the value of MS specialist nursing and identifies more work needed to strengthen the case further. We know that people with MS greatly value and rely on their MS specialist nurses. We want to continue to gather the evidence that will help make that case to those commissioning and designing services in the future.

The report makes some recommendations about more ways to demonstrate the value of MS specialist nursing. One of these is to define how many people with MS a specialist nurse can support. Caseload is a complex issue and depends on the needs of individual people with MS, the number of nurses, the geography of the area (rural or urban) and the other services that are available. It is vital to support work that ensures nurses have a manageable size caseload that allows them to properly meet the needs of people with MS.  The MS Trust has begun work to help define the caseload for an MS nurse. The first phase has been undertaken by Dr Alison Leary, a nurse herself, who is expert on the role of the specialist nurse.

We have also done a survey of the MS specialist nurses and used their responses to map out services and the location of the nurses. This is a valuable tool to help make sure services are equally available and to campaign for more services where needed.

Finally, over the next year we will be working closely with some MS nurse teams to help them pull together evidence of the impact of their service and build the skills needed to show that value to managers and commissioners.

We hope that everything that we do at the MS Trust will improve the lives of people with MS. These projects I describe are all part of our MS Nurse Support Programme. We believe this work is vital and that our support for MS nurses and therapists, as well as our education programme, makes a key contribution to ensuring that people with MS get the support they need. 

Thank you for supporting this vital work and we hope you will continue to take an interest.


Dec 1, 2011

Our work with MS nurses continues

Our work with MS specialist nurses is ongoing and our ultimate goal is to ensure that everyone with MS, whatever their circumstances, has access to quality healthcare. The network and resources that the MS Trust offers to health professionals working with people with MS is unique. Every MS nurse knows that they can turn to the MS Trust if their service is under threat, and for their own professional education and development, as well as to access information that is up to date, timely and well researched.

Last month, around 350 specialist nurses, therapists and other health professionals attended the MS Trust’s 15th Annual Conference. This is a key event for MS nurses every year and the only place where they can come together with such a wide range of other professionals working in MS. Our conference gives them the chance to share experiences and learn about the latest developments, as well as giving us a great opportunity to learn more from the nurses about what support they and their patients need for the future. 

"This year's conference was excellent. It helped to refocus my mind following a very difficult 9 months of restructuring at work" MS Nurse who attended our Annual Conference

It is only thanks to the funds raised from generous donors, like you, that we are able to continue working so hard on behalf of every MS specialist nurse. For every MS nurse we can support, the benefits will roll out to hundreds of people with MS and their families. 

Thank you again for donating to our MS Nurse Support Programme and I look forward to keeping you updated on our progress.


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Multiple Sclerosis Trust

Letchworth Garden City, Hertfordshire, United Kingdom

Project Leader

Laura Percival

Fundraising Officer
Letchworth Garden City, Hertfordshire United Kingdom

Where is this project located?