Free enquiry service for people with MS in the UK.

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