Free helpline for 100,000 people with MS in UK

by Multiple Sclerosis Trust
Vetted

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

“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:

The Information Team are continuing to work hard to stay abreast of current developments in the stem cell research arena.  Earlier this year they contributed to the BBC current affairs programme – Panorama and commented on the availability and feasibility of stem cell therapy for people with multiple sclerosis (MS). There has been lots of media hype and speculation whether it is possible for stem cells to become cell types which could slow MS disease activity, repair existing damage or replace faulty parts of the immune system or nervous system. Stem cell therapy is already being used for other conditions, such as cancer of the blood (leukaemia).

Your donation will enable us to continue to research into innovative projects and in turn fulfil our ongoing commitment to improve the lives of everyone living with MS.

We are currently supporting research in to Stem Cells, providing vital funds to the ACTiMuS trial Bristol, looking at the effects of bone marrow stem cell infusion people with progressive MS.  By supporting stem cell research in these ways we remain at the forefront of supporting significant advances in MS treatments.

The MS Trust is also funding a pioneering group in London to conduct the first audit of a real-world UK MS Stem Cell service run beyond a clinical trial.  These findings will enable Health Professionals and MS multidisciplinary teams in future to quickly determine the likelihood of success of treatment, to ensure that only compatible people are treated.  With this detailed and regulated selection in place many will be saved from unnecessary delays and demanding, prolonged tests.

It is thanks to the generosity of the MS Trust supporters like you that we are able to further develop this vital work for those affected by multiple sclerosis.

At the MS Trust we believe one of the best ways to help people with multiple sclerosis (MS) is to support them to take more control of their MS. Our information team produces practical, evidence based information so they can:

• make choices that are right for them

• decide how best to deal with their health

• have better informed discussions with their health professionals

Our Information Team pride themselves on their knowledge and experience enabling them to help people living with MS by providing accurate and useful information.  They run the Enquiry Service each day and respond to queries through the telephone, post, email and social media.  They are constantly reviewing their approach and processes to ensure that they are best serving the people that contact us.

In November they conducted a user survey and invited feedback from people using our service. The response was very positive, 94% of callers said that they would use the service again.  The majority of callers also reported an increase in confidence, knowledge and understanding as a result of their contact.  84.6% of the people that responded to the survey indicating that they found the information they received useful.  57% of the November enquirers had contacted us before, showing that they value, trust and respect the information they receive from us.

Our enquirers told us after calling our Enquiry Service;

“The lady I spoke to was extremely helpful and informative so it gave me confidence and filled in the gaps in my knowledge.” Anon

“I feel supported by the MS Trust. I know that I am not on my own.  You can always help.” Anon

This feedback is so encouraging and pleasing for us that we know we are valued by people with MS. Thank you for supporting us with your donations and enabling us to continue this important work.

Sharing Knowledge

Our Information Team at the MS Trust not only deals with enquiries through the telephone service, website forums and emails but through the booklets and factsheets they produce too.

These publications include information on symptoms, medications and treatments.

This year the MS Trust has worked with health professionals, people with MS and other MS charities to try to create a new focus on treating relapsing remitting MS as soon as possible. We believe there’s increasing evidence that early treatment improves the chances of people with MS staying healthy in the long term.

 

Help to consider drugs for MS

However, working out which treatment is right for you can seem more complicated than ever. The range of options for MS treatment has expanded significantly in recent years. There are now 11 disease modifying drugs licensed for treating MS in the UK. They’re each taken and monitored in different ways, and they each have their own benefits and risks. What’s more, not all of them are available in all parts of the UK.

 

Back in 2004, the Department of Health launched a website called MS Decisions. This was designed to help people find out more about MS treatment options. Thousands of people visited the site and found the independent information useful. However, over the years, the information didn’t keep pace with the changes in MS treatments.

 

This year the MS Trust took over responsibility for MS Decisions. We wanted to update it so that it offered reliable, independent information on all the MS drugs now available – and make sure it remains accurate as new treatments become available in the years to come.

 

Clear and accessible information

But we also wanted to make sure that the information was presented in a way that made it easy for people to MS to see what options were available, consider the factors that are important to them, and compare MS drugs in a simple, intuitive way.

 

We’ve worked closely with people with MS, MS nurses and neurologists to develop the new MS Decisions. The site now features a guide to making your decision, full details about all of the drugs, a list of common questions, as well the decision aid.

 

We’ve also redesigned our booklet Disease modifying drugs to complement the site and to help people with their MS become better informed and have more productive meetings with their health professionals.

 

We can only do this thanks to donations from people like you.

 

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Organization Information

Multiple Sclerosis Trust

Location: Letchworth Garden City, Hertfordshire - United Kingdom
Website: http:/​/​www.mstrust.org.uk/​
Project Leader:
Emily Long
Letchworth Garden City, Hertfordshire United Kingdom

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