Multiple Sclerosis Trust

The MS Trust's mission is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. We work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.
Aug 3, 2012

Information needs at diagnosis - research complete

Our project on the information needs of people newly diagnosed with multiple sclerosis (MS) has reached the end of the research stage. 34 phone interviews, five face to face interviews and four focus groups took place. In addition, 26 people not selected for interview also submitted information. The majority (84%) were people with MS but family members also contributed.

Analysis of the responses is still underway. So far our research has highlighted factors that influence how people seek and use information after diagnosis including:

  • How they seek information in general (not just about MS)
  • Whether diagnosis was a drawn out process and largely expected, or whether it was quick and unexpected
  • What symptoms they are experiencing
  • The time needed to adjust to the idea of having MS
  • Support from friends, family or health professionals in using information, especially when deciding about treatments
  • MS nurses played a key role in providing information and supporting people to use it.

The MS Trust commissioned this research to help us develop better resources for people newly diagnosed with MS in the future. We will update you further on this project once the responses have been analyzed. Thank you for supporting us to provide the best possible information for people with MS through our helpline, website and free publications.


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.

Apr 30, 2012

Amanda's Story

"I was diagnosed with multiple sclerosis by letter. It was a copy of the results from my recent brain scan. When I read that I had lesions in my brain that “suggested demyelination”, I had a pretty good idea what it meant. There was a number I could call for more information, but I tried and never got through.

"From the day that letter dropped in, back in 2008, I lost two stone. I couldn’t eat from the stress and anxiety. I just felt like I was going to get worse and worse and die within months. I couldn’t go out, couldn’t get dressed, couldn’t work; I didn’t know where to turn.


"A month later, when I was sent for a lumbar puncture, I picked up the MS Trust’s newsletter at the hospital. I rang the MS Trust and can’t explain the relief I felt when the person on the end of the phone said “we have people here who you can talk to”. It was as though I was on a boat adrift out in a wide ocean, then I threw a line out and somebody caught it.

"The lady I spoke with was extremely informative and more importantly for me, very understanding and empathetic. She told me that every single person with MS is different and took the time to talk with me about my concerns.

"I felt much better after the call. It’s really comforting for me knowing there’s somebody out there with the expertise about my condition that I can contact easily. For me, that’s all I need to put my mind at rest and enable me to get on with my life. I will be forever in debt to the MS Trust, for helping me at what was such a terrible and upsetting time."

Thank you for supporting this project, which helps people like Amanda every day,

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