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 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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Nov 6, 2012

Research shows value of personalised information

Our latest research project looked at the information needs of those who are newly diagnosed with MS and those who support them. Appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.

This research provides information about what is most important to people around the time of diagnosis and will allow us to develop better resources for people newly diagnosed with MS in the future. It also highlights to health professionals the information preferences and needs of people with MS and should allow them to work more effectively.

Key findings were:

  • Neurologists and MS specialist nurses were the key providers of information around the time of diagnosis
  • The need for information changes over time, not always in a predictable way
  • Information should be offered in stages or layers, so that a person can choose how much information they receive on a particular topic at any particular time
  • Positive, practical, up to date information is important
  • Information tailored to the needs of an individual is useful
  • Information should be delivered in a variety of formats
  • The evidence base, or lack of evidence, should be made clear
  • Information can be empowering but too much information, or information at the wrong time, can be detrimental
  • Some people need support to use certain information, for example, when choosing a disease modifying treatment
  • Charities play an important role, including signposting to other organisations
  • Information was lacking in some areas especially on benefits and local services

We are only able to continue providing information to people with MS thanks to the support of generous donors like you. Thank you for helping to fund our free helpline and we look forward to updating you again soon.

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