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.
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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Sep 1, 2016

Good information is still so much in demand

“It is very helpful and encouraging to hear a neutral opinion”

Since 1993 the Multiple Sclerosis (MS) Trust has set out to provide trusted, reliable information about MS to anyone who needs it. When we began, very little information was available to the public

“I was diagnosed, discharged and sent home to wait for a referral a few weeks later. I wasn’t given any leaflets and because there was no internet around then all I had were library books and the telephone directory.”

Nowadays the problem can be too much information. Search “multiple sclerosis” on Google and you will receive over 21 million results. It can be terrifying and overwhelming to sort through the promises of miracle cures, traumatic personal stories and adverts for medical devices. People need to know there is somewhere to turn to; someone at the end of a telephone who can answer questions, provide the evidence so that they can make their own decisions about how they will live with and manage their MS.

That is why the MS Trust’s enquiry service is still so much in demand. As of the end of July, the number of enquiries we have received is already 20% higher than at the same point last year. And the number of questions we receive from health professionals caring for people with MS has also increased. In July we received 33% more questions from health professionals than in the previous month.

People contact us to ask about a wide range of topics; in July we responded to questions on almost 100 different topics such as drug treatments, symptoms, benefits, lifestyle issues such as diet and regulations about driving. Our service users really value the fact that they can pick up the phone and talk to someone about whatever is worrying them. They know that they will speak to someone with a wealth of knowledge and experience, who will either know the answer or know where to find it.

People ask their questions in lots of different ways. Last month, 61% of enquiries were over the telephone, 22% via Facebook, 16% on email and the remaining 1% via Twitter and our blog.

We are determined to be here to provide evidence based, personalised information about MS for everyone that needs it, but we can only do it thanks to the generosity of people like you. Your support means that we can continue to help people understand and take control of their MS. On behalf of everyone at the MS Trust and the thousands of people who use our services, thank you very much indeed.

Links:

May 26, 2016

We're here for MS nurses

We’re here for MS nurses, so that they can be there for people living with multiple sclerosis (MS).

MS nurses have a huge and varied role.  From one patient to the next, they might be training someone on how to use a specific treatment, helping with benefit forms or advising a family on where to seek practical help in the home.  They are routinely described as ‘a vital lifeline’, ‘my guardian angel’, ‘the only one who understands me’.  But they can’t do their job alone. 

To provide the best care possible to people with MS they need a detailed understanding of the condition and up-to-date knowledge of treatments and the latest research. The NHS does not provide training to new MS nurses or ongoing professional development. That’s where the MS Trust comes in. Since 1999, we have trained every new MS nurse, providing them with the in-depth knowledge they need to help people deal with the complexities of MS.  And we take care of their ongoing professional development at the MS Trust Annual Conference; bringing together 300 multidisciplinary MS specialists and world class speakers to ensure MS nurses can access the latest developments on treatments, research and best practice. 

That’s not all we provide. Time spent in clinic is often limited and people don’t have time to get the answers to all of their questions. In order to offer comprehensive care and make a real difference to people’s ability to manage their MS, MS nurses need resources they can pass on to their patients. They need factsheets and books which contain trusted information and offer an additional source of support which can be referred to as needed. Of the 50,000 free publications the MS Trust sends out each year, 70 % is given to MS specialists to distribute as needed in their clinics.

Tracy, a mum living with MS “Living with MS is bearable knowing that someone cares, I am not alone and I have someone to go to if I need advice.”

You might think the NHS should fund these things but it doesn’t; we don’t receive any governments funding to provide this support. Which is why we are asking for your help.

We believe everyone affected by MS should have access to someone who understands how their condition can develop, who can arrange appropriate treatments and support and really can make a world of difference. MS nurses fulfil this vital role, but they can’t do it without our help.

Thanks to the generosity of MS Trust supporters we are able to secure the best quality of care for people with MS, now and in the future.

 
   

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