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.
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,

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.

Links:

Jan 19, 2012

Researching the information needs of people with MS

Thank you very much for supporting our free helpline for people with MS in the UK. This service is run entirely from voluntary contributions and without the support of generous donors like you, it could not continue.

Access to clear and accurate information is important for everyone, but people are individuals, and they differ in the kinds of information they need, where they get it and what form the information takes. Whilst knowing about multiple sclerosis and its treatment is crucially important, many people may also want to know more than just the medical facts. Family and friends will have their own information needs too. The information needed may change as the condition does and may differ according to the type of MS.

We are currently in the process of setting up a research project looking at the information needs of people newly diagnosed with MS. The results of this will inform the resources and materials we develop over the coming year and beyond, helping to ensure that we are providing the type of support that people really need via our helpline, website and publications.

To get the project started, we have commissioned a team of three independent and experienced researchers, Ros Levenson, Mercy Jeyasingham and Sarah Smith, to help us better understand the information needs and preferences of people who are newly diagnosed with MS in the UK. We are now recruiting participants for the study and look forward to updating you on how this research progresses.

Thank you again for helping us to provide the best possible information for people with MS. I hope you will continue to take an interest in our work.

“I was diagnosed with MS seven years ago. Since this time, the MS Trust has supported me both with printed materials and through the phone line. Without the MS Trust I would feel very isolated with my condition - it’s good to know you are there.” Anonymous user of our helpline

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