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.
May 29, 2014

21 years supporting MS Nurses

MS Nurse Consultant Karen Vernon
MS Nurse Consultant Karen Vernon

This year the MS Trust is marking its 21st anniversary and as part of our 21 Stories project we asked Karen Vernon, MS Nurse Consultant in Salford and one of the early MS specialist nurses, to reflect back on some of the big developments for people with MS over the past 21 years.

In my mind, without doubt the biggest achievement over the past 21 years has been the development of specialist practitioners in MS, whether this is a neurologist, nurse or an allied healthcare professional. This has enabled the safe delivery of the disease modifying treatments to some patients, but ultimately more patients with MS have had expert care independently of whether they are on drugs or not, often from a multidisciplinary perspective. This has also acted as a catalyst for specialist networks which enables sharing of best practice, again enhancing care for all.

The support from the voluntary sector has been crucial in this. The involvement of the MS Trust in providing specialist education for practitioners has been invaluable. Very few specialist nurses in any field have the ability to undertake a development module such as the one the MS Trust runs, which enables them to have a foundation for practice. The MS Trust continuing support to specialist practitioners cannot be underestimated.

I think the biggest challenge for the next 21 years will be in maintaining and further developing services to reflect changing needs, both of people with MS and also the varying demands of the different drugs coming to license. The demands on the health service cannot be underestimated and it is essential that we do not allow MS services to become all about the drugs, and that we offer an equitable service to all people with MS.

I also think a major challenge will be the loss of a significant percentage of specialised practitioners' expertise through retirement. Succession planning is crucial in all aspects of the service and, again, the involvement of the voluntary sector in education is paramount, in order for services to continue to deliver high standards of care. How this is developed will again need to reflect changing needs within the healthcare community.

Karen Vernon, MS Nurse Consultant

The MS Trust works tirelessley to support the MS nurse workforce in the UK and with the help of donors like you, we will continue to do so, to ensure everyone with MS has access to the services they need. Thank you for your support.

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May 29, 2014

MS information you know you can trust

Information Standard logo
Information Standard logo

Search for multiple sclerosis on the internet and you’ll find a wide range of web pages, chatrooms and social media sites offering a mix of news, opinion and hearsay. How can you know if you’ve found information you can trust?

The Information Standard is a programme run by NHS England for all organisations producing health and care information for the public. The MS Trust has been part of the scheme since 2011 and we’re proud to say that this year we were once again accredited.

In March a team from the Information Standard came to our offices and took a rigorous look at our books, factsheets and website to make sure everything we produce is clear, accurate, balanced, evidence based and up to date. They checked that:

  • we have a defined and documented process for producing high quality information
  • we use only current, relevant, balanced and trustworthy evidence sources
  • we understand our users and we user-test our information
  • we double-check our end products and clearly identify any conflicts of interest
  • we take on board user feedback
  • we review our products and processes on a planned and regular basis

This means when you read our books or look on our website and see the Information Standard mark you know that our information can be trusted. We’re currently working on several new MS information resources that will be available in print and online later in the year.

Making Sense of MS

We know that being diagnosed with MS can be a particularly challenging experience. Even now, when there is so much information available, finding what’s right for you at the right time can still be difficult. To meet this challenge we’re working on a new resource designed to give people who’ve just been diagnosed the basic information about the condition and help them to get more on the topics that are important to them.

Secondary progressive MS

The change from relapsing remitting to secondary progressive MS can also be a difficult time, yet it’s a relatively neglected area. That’s why we’re working on a resource that will help you understand exactly what secondary progression means, how management of this type of MS may change and some of the research looking for new treatments.

Disease modifying treatments

Several new drugs for relapsing remitting MS have become available in recent years. While this has expanded choice, balancing the benefits and risks of treatments and deciding on the most suitable approach for you is becoming more complicated. We’re working to update our book and web pages with the latest information so that you can make informed decisions about your options.

It's only thanks to valued donors like you that we are able to provide high quality free information to help everyone affected by MS. Thank you very much for your support.

Links:

Feb 6, 2014

Securing services for people with MS

> Our GEMSS programme helps safeguard the role of an MS nurse at Northumbria NHS Trust

> The programme enters its second phase with ten new teams from around the UK

Last year we ran a pilot project called GEMSS (Generating Evidence in MS Services) helping four MS services around the UK measure the impact of their work so they can demonstrate to managers what a vital, cost effective service they deliver.

Because of a lot of this work is about managing data and writing reports it can sometimes feel a little abstract: what practical difference does it make to you if you’re affected by MS?

Well, we’ve recently found out that our work has been instrumental in keeping Miriam Forster, an MS nurse in Northumberland, in a permanent post. This means that people with MS in the region will continue to have access to high quality, expert MS care.

Northumbria NHS Trust covers one of the largest areas in the country. Because of the distances many people with MS aren’t easily able to access clinics. In the last year Miriam and her colleague Jane Metcalfe travelled over 18,000 miles, making sure that everyone with MS, no matter where they live, was able to receive expert advice and support in managing their condition.

However Miriam’s post was not permanent and was due to come to an end this year. With only one MS nurse covering such a vast area the service would inevitably deteriorate. Ultimately, with much more limited access to specialist support, advice and information, the wellbeing of people with MS could suffer.

But thanks to Jane and Miriam’s participation in GEMSS, and the evidence they were able to produce, we are delighted to report that Northumbria NHS Trust has now made Miriam’s post permanent. This is a great result for people with MS in Northumberland, but also for everyone affected by MS in the UK.

We’d like to thank you for supporting our work protecting MS services. We’re delighted to see it already making a real-life difference to people with MS. This year our GEMSS programme enters a new phase, with ten new teams of MS nurses and therapists. We look forward to helping them deliver even better services for everyone affected by MS.

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