Free enquiry service for people with MS in the UK.

by Multiple Sclerosis Trust
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Free enquiry service for people with MS in the UK.
Free enquiry service for people with MS in the UK.
Free enquiry service for people with MS in the UK.
Free enquiry service for people with MS in the UK.
Free enquiry service for people with MS in the UK.
Free enquiry service for people with MS in the UK.
Free enquiry service for people with MS in the UK.
Our resources brochure
Our resources brochure

Dear Friend,

Looking back at what our Enquiry Service achieved for people with MS in 2017

Last year was a very busy year for our Information and Engagement Service as we helped people with MS from all over the UK.  Our work is only possible because of the support we receive from our kind friends, including those who donate through GlobalGiving.   I thought you would like to know what you helped us to achieve last year.

Our team responded to the 2,720 enquiries received by phone, e-mail and through social media.  Those enquiries were answered quickly and to the exacting standards which people with MS deserve.  Our on-going anonymous User Survey, asking for feedback about our service, revealed that 87% of those turning to us for information would use our service again, and 90% would recommend us to someone else who has a question about MS.  Just some of the feedback we received:

 “I was impressed with the swiftness and professionalism of the reply”

 “Someone objective and knowledgeable to talk to and who listens”

 “I used the information to help make up my own mind on how to proceed with my own MS and to share this decision with my family”

 “Information from the enquiry service has the power to enable individuals to question their diagnosis or treatment.”

Turning to our printed information - 44,959 items were ordered.  Whilst many people with MS still value and want printed publications, an ever growing number of people are also accessing our information online. Two thirds of all of the traffic to our website last year was from people accessing our current, evidence based information about MS.  Those sections had 2,533,773 page views.

In order to maintain our Information Standard accreditation, everything which falls within the scope of the quality standard (our publications, website, DVDs etc) must be reviewed at least every three years.  In 2017 several of our publications, and over 100 of the A-Z items on our website were reviewed.  One of the books which was totally revised last year was our Disease Modifying Drugs publication.   There is obviously great interest in this fast changing arena, and in the month following the publication of the revised version, 1,577 books were posted out.  It is the publication which was most requested in 2017 with more than 6,700 copies being sent out.

Our Enquiry Service is dedicated to providing people with MS with the information they need to make the choices which are right for them.   That information can make a life changing difference and makes MS lives better.  None of our services would possible without the kindness of our supporters.  Thank you.  You have helped us to achieve a great deal for people with MS and we are truly grateful.

Yours sincerely,

  

Jo Sopala

Director of Development.

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Two of our publications which have been updated
Two of our publications which have been updated

Dear Friend,

Our information service continues to provide people with the information and support they need to make the decisions that are right for them…..

Our charity continues to provide current information to help people with MS make sense of what is happening to them; and make sure that there is a friendly and expert person who they can turn to when they need objective answers.  All of our work is only possible because of the help we receive from our supporters, including those who donated via GlobalGiving.

All health and care information produced by the MS Trust, targeted at the public, which is intended to offer information on health and well-being, the diagnosis and treatment of MS, as well as care and service options, is covered by the Information Standard quality mark.  The Information Standard is an independent certification programme commissioned and run by NHS England.  It means that people with MS know that the information they receive from us is clear, accurate, balanced, evidence-based and up-to-date.

Several of our most requested publications have been totally revised and reprinted in the last few months. These include:

  • Making Sense of MS – this series of publications is particularly useful for people who have just been diagnosed with MS.  It is designed to help them find just the right amount of information without overwhelming them. 
  • Our publications on Primary progressive and Secondary progressive MS - these publications help people to understand more about the different types of MS. They provide information about symptoms and the treatment and support available.

We know that the information we provide for people with MS is of the highest quality, but we thought you might be interested to know what Professor Gavin Giovannoni of Barts and The London School of Medicine and Dentistry, has said about the value of our work:

 "I could not imagine seeing someone in my MS clinic and not being able to refer them to the MS Trust.  The MS Trust produces by far the best evidence-based information for people with MS and is responsible for training several generations of MS nurses.  For me a world without the MS Trust is inconceivable.”

None of our work would be possible without the support of people like you.  With your help, we will continue to do all we can to support people living with and affected by MS, so they are able to live the best life possible. We are truly grateful.

With best wishes and thanks from everyone here at the MS Trust.

 Yours sincerely,

  

Jo Sopala

Director of Development

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Dear Friend,

Our information service continues to be a valued source of support, and comfort for people living with, and affected by, multiple sclerosis (MS)

More than 100,000 people in the UK have MS and 100 more are diagnosed with the condition each week. MS is a lifelong, debilitating condition with an unpredictable disease course, which also has a profound effect on the families and friends of those affected. A diagnosis often leaves people feeling confused and isolated – unsure and fearful about what the future will hold. They need positive and reliable information that will help them to make sense of what is happening, self-manage their condition and talk confidently to health professionals. This is where our information service comes in.

One of the most important services offered by our charity is our personalised enquiry and research service.   Every month, on average, this small team of dedicated experts responds to 250 enquiries which are receive by telephone, e-mail and social media.  That team researches and writes our award winning publications. They also search and report on national and international MS news and stories.  As a result they are in the unique position of having access to, and knowledge of, the latest information and research on all aspects of MS from all over the world.  So people who contact our team are always given the most recent and relevant information, in jargon free language which they can understand.  Where the answer to a question is not immediately available, they will undertake research to find answers.  There is no equivalent service.  Enquiries are received from people with MS, their families, individuals who are worried that their symptoms might be MS, and by health professionals.

This is a small selection of recent feedback:-

“Thank you very much for the fast response and for the insight you have given me, I will look at all the websites and information you have given me in great detail”.

“Thanks for getting back to me and all the helpful information you have passed on. I will look in to it all. I'm determined to help my wife have a hopeful future fighting her MS and maybe beat it one day as new medicine develops. Thanks again”

None of our work would be possible without the support of people like you.  With your help, we will continue to do all we can to support people living with and affected by MS, so they are able to live the best life possible. Thank you!!!

With best wishes and thanks from everyone here at the MS Trust.

Yours sincerely,

  

Jo Sopala

Director of Development

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Dear Friend,

Nobody should be left to face MS alone, but all too often this is happening in the UK.

Coming to terms with an MS diagnosis can be very difficult indeed – with some going on to live full and active lives while managing their symptoms with disease modifying drugs, while others find themselves unable to control their relapses or they may decline slowly or rapidly over the years to a point where they struggle to even leave the house.

The MS Trust Information Service plays an important role for every single person, no matter what type of MS they have (relapsing remitting or progressive) or what symptoms their MS challenges them with. But for people with progressive MS who are particularly vulnerable to isolation, having a friendly voice at the end of the phone to talk tp them about MS, answer their questions, and help them to access support where they need it, really can be life changing.

If you are diagnosed with primary or secondary progressive MS, you will not qualify for disease modifying drug (DMD) therapies, although it is hoped that this will change in time with new research and drugs being developed all the time.

It is well documented that there is a severe shortage of MS nurses and health professionals in the UK, and this combined with the clinical demands on MS nurses with regards to administering and monitoring DMDS means that progressive MS patients can often fall to the bottom of the priority list.

“I was on DMDs for about 7 years, but after my consultant told me that I had secondary progressive MS, there really was nothing in way of support. I felt so let down and I even tried changing hospitals. I get more information where I am now, but my MS nurse is just so overworked. Maybe I am past the relapsing stage of MS, maybe I can no longer take drug therapies, but that does not mean I should be forgotten.”

Carol, Southport

The MS Trust is doing everything it can to campaign for and fund more to stop people from being left to manage MS alone. But until this is a reality, our Information Service is vital. Without it, people with MS will continue to miss out on the care and support needed.

I wanted to say a big thank you to everyone on the MS Trust helpline. I have used your service numerous times over the last three years and everyone I have spoken to has been incredibly helpful, informative and empathetic. You offer a wonderful service that has helped me make informed choices about my care, and been a friendly voice that understands what I am going through. Having someone supportive, knowledgeable and caring at the end of the phone is invaluable and really does help with relieving some of the stress the disease can cause. Once again a huge thank you. “

Anonymous, 2017

The MS Trust Information Line also very often receives calls and enquiries from family members and friends who do not necessarily have any access to support themselves and are struggling to piece together the information they have to support their loved one as best they can.

I was feeling quite confused about my daughter's MS diagnosis and they talked me through so many aspects of the condition with such calmness and gave me so much information. A service like this is quite amazing.  Thank you so, so, so much.”

Anonymous 2017

By providing a connection to help and support through the MS Trust Information Service, we hope to ensure that no-one is ever left feeling isolated or alone when coming to terms with or coping with MS. Indeed, we hope that in doing so they will be able to live as full a life as possible, take control and find a new way forward.

We just couldn’t do any of this without the generosity of supporters like you. From the bottom of my heart, I would like to say a huge THANK YOU for helping us to be able to reach out to people with MS in this way, and to be there for them when they need us most. The MS Trust and the MS community are both eternally grateful and humbled by your generosity.

Yours sincerely,

Jo Sopala

Director of Fundraising

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The fact that you have donated to the MS Trust via Global Giving, or are thinking doing so, tells me that Multiple Sclerosis (MS) is something that means a lot to you. Perhaps you have MS yourself, maybe for many years or maybe you are still coming to terms with a recent diagnosis. Or perhaps you have watched someone you care about struggle to cope with their MS, or have been inspired by their strength and resolve to live as full a life as possible.

Here at the MS Trust, it means a lot to us too. Our aim is to offer help and support to people affected by MS to ensure they live as full a life as possible, and our Enquiry Service – manned by our dedicated Information Team – is an important part of this. But something we are often asked is what value there is in this service in a digital age where most information is available at the click of a button? We believe that the value in this is huge. Priceless in fact.

Providing a connection

The UK has a shortage of MS Nurses with 2 out of 3 people – approximately 68,000 – living in areas where there are not enough. The MS Trust is working to change this by funding new MS Nurses where the need is greatest – something which you can also support via Global Giving!

But until there are more MS nurses, people will continue to miss out on the care and support needed – and this is where our Enquiry Line becomes vital. People with progressive MS who do not qualify for Disease Modifying Drugs (DMDs) are particularly vulnerable to disconnection. The clinical demands on MS nurses with regards to administering and monitoring DMDS mean progressive MS patients can often fall to the bottom of the priority list, and in cases where mobility is affected it can be very difficult to seek help at all. But the MS Trust Enquiry Line is always on hand to help and offer support where it might otherwise not be available.

A place where every question can be answered

MS effects everyone differently and beyond DMDs, treatment tends to depend on an individual’s particular symptoms and the relief possible for these. The result of this is that the list of possible symptoms, treatments and outcomes is endless. The breadth of knowledge required by the Information Team to handle these enquiries is enormous. But our information team rises to this challenge on a daily basis, with over 30 years’ experience of handling enquiries relating to MS between them. Being able to just call up and ask any question at the start of your diagnosis or as it changes over the years, and knowing that you will always be able to find the answers you need is a huge support.

Information you can trust

The Information Team are also responsible for collating all our print and digital publications with information on anything from bladder issues to fatigue, exercise to pregnancy with MS, in addition to all the resources available on the MS Trust website. All of our published information is completely free to those who want it and is accredited by the Information Standard, so when someone picks up one of our booklets or consult our website, they can be sure it’s information they can trust. Yes, there is information available online – an endless amount in fact. So much so, that working out what is MS fact and what is MS fiction can be a challenge. Search engine results can often offer false hope or worry where there needn’t be, so the MS Trust Enquiry Line offers an alternative one-stop shop for evidence based and up to date information to help people with MS to make informed decisions about their own treatment and lifestyle.

A friendly voice, ready to listen

And when all is said and done, the Enquiry Line also offers a friendly voice on the end of the phone, ready to listen, offer sympathy and to help people to see a way forward. The Information team are passionate about MS care and providing assistance where they can, and at a time of crisis or crossroads, the internet can be a very confusing and lonely place indeed.

I’d like to leave you with a quote from someone who was diagnosed with MS last year, and who has since been in regular contact with the MS Trust.

“When I was first diagnosed, I was handed some literature produced by the MS Trust. I was told it was the highest quality and most reliable information around and it certainly did allay my fears. And I know fellow MS sufferers who were given absolutely no information at all, and found a tower of strength and support in the MS Trust when seeking information for themselves.”

I think that says it all! So if you have supported our Enquiry Line and Information Team, or if you are thinking of doing so, please accept my most heartfelt thanks. We receive no government or NHS funding, so it is you, our wonderful supporters, who make all this possible and we could not be more grateful for your generosity.

Yours sincerely,

Jo Sopala

Director of Fundraising

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Multiple Sclerosis Trust

Location: Letchworth Garden City, Hertfordshire - United Kingdom
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Project Leader:
Marissa Green
Letchworth Garden City, Hertfordshire United Kingdom
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