Specialist nurses for people with MS in the UK

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.

Links:

• The MS Trust's 21 Stories project
• Find out more about the MS Trust's work supporting MS Nurses

> 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.

Links:

• More about the GEMSS programme