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.
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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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. 

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