Free enquiry service for people with MS in the UK.

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

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