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.
Dec 2, 2016

Information you can MS Trust - our biggest year!

With a month still to go, 2016 has officially been the busiest year yet for our Information Team, with the total number of enquiries received now exceeding our previous record, and it looking likely that for the first time ever we will have had more than 3,000 requests for information in one year from people living with MS, and health professionals on the front line of MS Care.

We are proud to be playing such an important role in ensuring that those with MS are able to live as full a life as possible. Time and time again we hear how people diagnosed with MS are finding there is either not enough information available, or there is too much – particularly online – and it is difficult to know what to believe. The MS Trust Information Team take away some of the uncertainty and help those affected to see a way forward.

The responsibility of this is huge for the team, made up of just three Information Officers. MS is complicated, life-long and unpredictable, without a known cause or cure, and it affects people in very different ways. Because of this, not only are the number of inquiries steadily increasing, the types of inquiries received are becoming increasingly varied and complex – from stem cell treatment, to symptom management, and diseased modifying drugs to pregnancy with MS. The list is growing and with every new piece of research, the team have to confidently be able to identify the sensationalist headlines and the latest fads, versus progress which could offer very real hope.

Furthermore, the way people access information today is ever changing. And so not only do the Information Team manage the increasingly busy enquiry line, they also write and update all the MS Trust publications – available both online and offline - and have sent out nearly 55,000 information factsheets and booklets, many of which are sent to Health Professionals helping people newly diagnosed with MS or experiencing changes in their MS to understand their condition and come to terms with the practical implications of their diagnosis. This is in addition to providing all the MS Trust website content – including the Understanding MS and the A-Z of MS pages. The website is an important resource for both people with MS and Health Professionals, and these two sections alone have had almost 4.5 million views in 2016.

We are determined to be here to provide evidence-based, personalised information about MS for everyone that needs it. We have the expertise needed to do so and are hugely proud of the dedication shown by our Information Team in delivering this service. But we can only continue to do this thanks to the generosity of people like you. Your support via Global Giving means so much to us, and on behalf of everyone here at the MS Trust and the 100,000 people with MS in the UK, thank you so much. We are truly grateful.

Yours sincerely,

Jo Sopala

Director of Fundraising

Dec 1, 2016

We are now funding new specialist MS Nurses with the NHS!

It has been a big year for the MS Trust. We already support and train all the MS nurses in the country, but now we are going one step further by funding MS nurse posts in the areas that need them the most. Our aim is simple - that everyone in the UK with MS has access to an MS specialist nurse.

MS nurses, like cancer nurses, are at the very heart of the care needed by someone living with MS, and there simply aren’t enough. In fact, our research has shown that 2 in 3 people with MS – around 68,000 – live in an area where there are not enough MS Nurses, and too often people are being left to manage their MS alone and without the specialist care they need. Those with progressive MS in areas where there is a shortage are particularly vulnerable.

We estimate that at least 58 more MS Nurses are needed and it will cost the MS Trust £46,000 to fund, train and support just one new MS nurse for a year. This is a huge undertaking for a charity of our size, but one that we need to do.

I recently met an MS Nurse called Mhairi from Lanarkshire - the only MS Nurse in Lanarkshire in fact. She looks after about 1,500 people with MS, even though it is thought that the most any one nurse can manage is 358. She works very long hours to try and get to everyone because if somebody needs her, she can’t just leave them waiting. When she heard about the MS Trust funding new MS nurses she had this to say: 

“Another MS nurse would make a massive difference. We could spend more time looking at people’s pain relief, mobility and independence. MS affects people in different ways and no two people’s care is the same, which is why specialist nurses are so critical.”                 

Mhairi is totally committed to the welfare of her patients, and it makes her so angry to know that some won’t get the care they need and deserve because despite her every effort, one MS Nurse just isn’t enough.

I know that some will wonder why the MS Trust as a charity is having to undertake this funding, and believe me we are not letting the NHS off the hook! The reality is that they are doing what they can with the resources they have. Nevertheless, we will continue to campaign for improved MS care, and a condition for every post funded is that the local NHS Trust take on this cost after 15 months.

We hope that you agree that until there’s a cure, supporting an MS nurse is one of the best possible ways we can help people with MS. And I just know that with the continued support of our wonderful supporters on Global Giving  we can do so much to make a real difference.

Yours sincerely,

Jo Sopala

Director of Fundraising

Sep 7, 2016

Helping MS nurses evaluate and improve services

Working on patient surveys
Working on patient surveys

MS Trust patient survey service

GEMSS (Generating Evidence in Multiple Sclerosis Services) is the MS Trust’s flagship programme to collect evidence about how services work best for people with MS and develop NHS services for the future. As part of the GEMSS programme, the MS Trust developed a patient survey which proved to be the most valuable and insightful tool to help MS teams prove their worth and identify areas for improvement.

Although the survey service was initially only open to teams participating in GEMSS, the MS Trust soon realised this was a valuable service we could offer to all UK MS nurse and therapist teams.

Since January 2016, 15 MS teams have used the service, with 1,171 people with MS responding. The results have yielded vital feedback on the services, both in terms of the value of the MS specialist nurse support, but also in terms of how services might be improved to better meet the needs of people with MS.

Some examples of the feedback MS services have received:

“Over the past 12 months, the MS nurse (Natalie) has been absolutely fantastic… She helped me a lot in times of difficulties and uncertainties. And in particular she managed very well my past relapse earlier this year. I have been able to attend physiotherapy classes and receive psychological support. She couldn't be more helpful and I cannot be grateful enough.”

“I have had the same MS nurse since my diagnosis. She has been really good at making and taking the time to listen and be there. She has referred me to other professionals so I would get the help I needed. The MS nurses at hospital do a great job. I am really grateful.”

“MS specialist far more 'in tune' with disease and its effects. Also better at discussing medication... Produces more detailed reports for GP and neurologist.”

“I would like to have maybe quarterly meetings which I could attend with an MS nurse present and fellow MS sufferers. Like a group meeting to discuss and reassure about symptoms/relapses. I do feel isolated at times.”

“I would prefer to visit my MS nurse every 3 months rather than every 6. Especially as at present I only see the consultant yearly.”

Thank you

We are determined to ensure that people with MS receive the specialist support that they need. We believe the best way to achieve this is to work with the health professionals providing these vital services, to prove their worth and actively seek ways to improve their services.

We can only do it thanks to the generosity of people like you. Your support means that we can continue to support MS specialist nurses and make sure that no one has to manage MS alone. On behalf of everyone at the MS Trust and the 100,000 people living with MS in the UK, thank you very much indeed.

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