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.
Jun 3, 2015

MS nurses need our help, but we can't do it alone

Many people assume that MS specialist nurses are trained by the NHS. That is not the case. In fact, the majority of specialist MS training and development in the UK is provided by us – the MS Trust. The MS Trust’s education programme costs over £300,000 to run each year. 

Karen, Consultant MS Nurse “Since my specialist career began, the MS Trust has been a constant. From their outset they identified education of professionals as being key to improving patient care. The specialist education they continue to provide for nurses and therapists is unique. They engage with you, they listen to you, they know you. You’re not just another nurse; you are a person who matters, with views.”

Nikki, Clinical Nurse Specialist in MS “17 years ago there were less than 30 MS nurses, but even then I was able to attend MS Trust education events to support my clinical practice. This has been vital in enabling me to become a competent specialist practitioner. The MS Trust has developed, with input from nurses and other professionals, the national MS care pathway and the MS nurse competency framework, which we use every day to guide our practice.”

We believe MS specialist nurses and therapists offer the best care and support to people affected by MS, and that to do their job, they need regular opportunities to update their knowledge and expertise. The MS Trust runs a week-long residential course for all new in post MS specialists, which provides an essential foundation of MS knowledge in the early stages of their role. The knowledge gained from this course is then built on through our annual MS nurse meeting and multidisciplinary conference, bringing together the top opinion leaders in MS and the specialists who see people dealing with the realities of MS every day.

Pamela, Consultant Occupational Therapist To everyone who supports the MS Trust financially, I’d like to say a huge ‘thank you’. The knowledge and support gained from them has helped me in all aspects of my work, which has had, either directly or indirectly, an impact on people with MS and their carers.” 

We know not everyone has access to the MS specialist nurses and therapists they need, and we will keep fighting to get more. Through our GEMSS programme we continue to build the evidence for the value of MS specialists, identifying the areas needing additional support and working with commissioners. Whilst this work is going on, we must make sure we don’t lose the specialists we have and ensure that those currently in post have ongoing support and education which enables them to offer the best possible care.

Thank you for helping the MS Trust continue to develop and support MS specialist nurses in the UK.            

Links:

Jun 2, 2015

Reliable and reassuring

David with his family
David with his family

I was diagnosed with multiple sclerosis (MS) in September 2014. I’d noticed problems with my walking and that I was getting tired much more quickly. In February I went to the GP and she immediately referred me to a neurologist. The neurologist sent me for an MRI scan and the results confirmed that I had MS.

I knew nothing at all about MS. The neurologist explained a bit about it. She told me to accept it, get on with my life, and not let it get in my way. But she didn’t give me any written information. She told me to try not to look on the internet. But I didn’t listen. I did look, and tried to work out what appeared nonsense and what appeared sensible.

And that was how I came across the MS Trust's website, and Making Sense of MS, their information for people newly diagnosed with MS. I was especially struck by the short video clips of people who’d recently been diagnosed discussing what it meant to them. It was just seeing ordinary people in their own homes rather than clinical environments.

They came across as reliable. The message was “Don’t worry overly. You have to understand where you are, and what you can do. But get on with life”. As a result I ordered a number of books from the MS Trust. The ones about telling your kids were really useful for our younger ones. We all understand things much better now.

Links:

Mar 3, 2015

We need MS specialists at the heart of MS care

Heart of MS care
Heart of MS care

At the MS Trust, we believe that people living with MS deserve the best possible care.

That’s why we’re launching a new campaign to make sure everyone affected by MS can get access to MS specialists (that is, specialist nurses, as well as physiotherapists, occupational therapists and other health professionals with expertise in MS). But we need your help to continue our work.

“I was signed off work. I was in a really bad place. And then I met an MS nurse. It was like someone had opened a window. The reassurance!”

Showing the difference MS specialists make for people with MS

Through our innovative national GEMSS programme, we’re working with MS specialists and developing new tools to help them show managers and commissioners how they offer the best, most effective care for people living with MS. As part of GEMSS, we are running a national survey service and are gathering the views of thousands of people with MS about how specialist care makes a difference to them. By supporting our campaign, you’re helping us to make the case for specialist MS care.

Training and supporting MS specialists to provide the best possible care

We train every new MS specialist nurse in the UK, making sure they can deliver the best possible care for everyone affected by MS and we offer a full range of training and support for physiotherapists and occupational therapists to gain expertise in MS. We also provide additional training as well as support and resources to make make sure all MS specialists stay up to date with the latest developments. By supporting our campaign, you can make sure we can continue this work.

Changing national guidance

We are disappointed that the new national Guideline for MS doesn’t go far enough in highlighting the importance of MS specialists. We want NICE, the national body that provides guidance to improve health and social care, to recognise the importance of MS specialist nurses as well as physiotherapists and occupational therapists with special expertise in MS. We want to raise the profile of these roles, help build the evidence for their value and to get NICE to acknowledge the difference that their services make. By signing up to our campaign, you’re adding your voice to this call.

Find out more about our Heart of MS Care campaign on the links below.

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