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.
Jul 18, 2013

GEMSS the story so far

MS Trust research was commended in July at the Royal College of Nursing as an example of good practice for demonstrating the impact of public services. Here we look back on the first year of our GEMSS project, and look forward to some exciting developments ahead.

At the MS Trust we believe that one of the best ways to help people with MS is to support their specialist nurses. Since 1996 we’ve been leading the way in campaigning for and supporting their work. We funded the only research project which shows that, as well as being vital to people with MS, MS specialist nurses also save money for the NHS by keeping people out of hospital. We estimate that a single MS specialist nurse, with an average caseload of around 250 patients, can save the NHS around £65,000 a year.

However, in recent years we’ve had to step up our work. As health budgets grow tighter, specialist MS nurses are under increasing pressure to demonstrate the impact of their work or risk having their funding removed. Some nurses have been asked to return to ward work, while some positions have become vacant (due to leave or retirement) and not been filled.

This is why we’ve been working to help MS nurses demonstrate the impact of their work, so they can make the strongest case possible to managers and commissioners about the importance of their role.

Over the past year we’ve been piloting a project called GEMSS: Generating Evidence in Multiple Sclerosis Services. We recruited MS teams from Northumbria, Dorset, Dudley and Sheffield and worked with them to develop tools to enable them to collect and analyse data on their service, so that they can demonstrate the difference their work makes to people with MS, and present this information to managers most effectively.

The pilot was a huge success, and has already been instrumental in keeping at least one nurse in post. “Without data our future is insecure,” said one nurse who took part. “But once the data is there it’s there and it’s quite easy to update. It helps us present a really powerful case to managers. Quite often they didn’t realise the service they were getting.”

This year we’re going to produce a companion piece to our report on the value of MS nurses called Defining the Value of Specialist Allied Health Professionals in MS. We will be showing why the knowledge of specialist therapists, such as MS occupational therapists, is crucial. And we plan to to roll out the GEMSS project further so that more MS services, and more types of MS specialist, have access to the tools we’ve helped to develop.

Thank you for helping to fund this work, which is already making a difference to MS services.

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Mar 12, 2013

MS nurses going the extra mile

In the run up to MS Awareness Week (29 April to 5 May) we have been asking people to nominate their MS nurse for our Super Nurse award: an accolade given each year to a nurse that really makes a difference. We have had nominations in for more than 80 nurses so far, from all over the UK.

For our latest report, I wanted to share with you some of the great comments that have been coming in from people with MS about their MS nurses. The nominations we've received really show what a difference MS nurses can make to individuals living with multiple sclerosis.

“I had symptoms for nearly 20 years before diagnosis and was in a very bad place when I first met my MS nurse. She just knew, she understood and she helped so much that it felt as though I had been picked up and cradled, such was her empathy. She always finds a time to see you and goes out of her way to be there.”

“My MS nurse is wonderful. He is totally reliable and is always there to answer questions. He monitors my medication every month and has a really positive attitude every time I see him. He always goes that bit extra and really cares for his clients. He is the most important person in our lives when it comes to anything related to MS.”

“When I was diagnosed, my MS nurse was there to explain everything to me about treatments and therapies. She is always only ever a phone call away and is such a good listener. She has supported my family through what was initially a difficult time. She is just such a great person and I am very lucky to have her as my nurse.”

“Despite caring for everyone in the county with MS, she makes me feel safe and cared for. She remembers everything. Without her I would be lost and alone.”

Thank you for donating towards our MS Nurse Support Programme and for helping to protect MS nurses now and for the future. Our work continues to ensure that people living with MS get the vital support, expertise and reassurance that only MS specialist nurses can deliver.

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Mar 11, 2013

Survey shows people value our enquiry service

"What
"What's the best thing about the service?"

During November 2012, we asked callers to our enquiry service to complete a survey about the support they received from the MS Trust. The 37 responses we received were on the whole very positive and showed that people really valued the information and support they were given.

Some of the common reasons for calling included help with treatment decisions, access to health services, support with work related issues, and people wanting to understand more about MS and how it might affect them or their loved ones.

On average, 83% of the people we surveyed said that contact with our enquiry service increased their understanding and knowledge of MS and 88% said it increased their confidence in dealing with the issue they called about.

“It helped us in deciding whether my husband should take the drug treatment being offered (he decided he would) and I intend to follow your suggestions about where to get first aid training to help my husband when he chokes on food.” Anon

94% of the people who responded to our survey said that they would contact the MS Trust again if they needed information about MS in the future.

 “You actually got to speak to a real person who seemed to have the time to talk through the things I needed to discuss. They were prepared to go away and research the information I needed and send it to me.” Anon

“It built my confidence to now tell people I have MS.” Anon

It costs £200 a day to keep our freephone enquiry service running. Thank you for donating towards this project and helping us to make a difference in the lives of people affected by multiple sclerosis.

During November 2012, we asked callers to our enquiry service to complete a survey about the support they received from the MS Trust. The 37 responses we received were on the whole very positive and showed that people really valued the information they were given.

 

Some of the common reasons for calling included help with treatment decisions, access to health services, support with work related issues, and people wanting to understand more about MS and how it might affect them or their loved ones.

 

On average, 83% of the people we surveyed said that contact with our Information Service increased their understanding and knowledge of MS and 88% said it increased their confidence in dealing with the issue they called about.

 

“It helped us in deciding whether my husband should take the drug treatment being offered (he decided he would) and I intend to follow your suggestions about where to get first aid training to help my husband when he chokes on food.” Anon

 

94% of the people who responded to our survey said that they would contact our Information Service again if they needed information about MS in the future.

 

 “You actually got to speak to a real person who seemed to have the time to talk through the things I needed to discuss. They were prepared to go away and research the information I needed and send it to me.” Anon

 

“It built my confidence to now tell people I have MS.” Anon

 

It costs £200 a day to keep our freephone Information Service running. Thank you for donating towards this project and helping us to make a difference in the lives of people affected by multiple sclerosis.

 

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