By Kirstie Connah | Fundraising Team
How has the role of MS Specialist Nurses developed?
A little more than 20 years ago, alongside the launch of beta interferon (self-injecting drug) to treat multiple sclerosis (MS) came the inception of MS Specialist Nurses. The first pharmaceutical company to receive a license recognised that additional nursing support would be necessary and recruited 30 agency nurses across the UK. With other drugs also awaiting licenses, there would soon be more non-NHS nurses - at a time when there were only three MS Specialist Nurses working in the NHS in the whole of the UK. The challenge was to unite and bring together all nurses to improve care for everyone with MS, not just those eligible for the new drugs. For this reason, the Royal College of Nursing called a meeting of the company, the Department of Health, MS Society and MS Trust. All recognised the value that MS nurses could bring and their scarcity; all recognised that key to their success was an education programme to increase knowledge in a relatively new (for nurses) disease area. Either the MS Society or the MS Trust had to take on this educational role.
Despite misgivings the MS Trust charity founders Jill Holt and Chris Jones agreed that the MS Trust would do so. Their reluctance stemmed from the fact that we were a small charity and had a lack of knowledge and experience of nursing, but they strongly supported the premise of MS Specialist nurses. They worked hard to develop the expertise in-house and work with health professionals to run an accredited education programme, produce a newsletter for health professionals (Way Ahead) and fund research to demonstrate the value of MS specialist nursing.
It was the beginning of a period of major expansion for the MS Trust, not only to develop the education programmes but also to meet the growing demand for information from both people with MS and health professionals.
Since then thousands of nurses and therapists have attended our education programmes, thousands of publications go out each year, and of course there’s our website. We've also become an increasingly influential in improving services for people with MS.
We continuously evaluate and review our education programme to see how we can enhance our offering and best support the MS Specialist Nurses in their perpetual task to help people living with MS.
The MS Trust has published an evaluation of its GEMSS project. GEMSS was an innovative project which saw the Trust’s facilitators work with 16 MS specialist teams in the NHS between 2012 and 2015 to enable them to evaluate and improve their services. The final report of GEMSS was published in November 2015 and is being used to improve services around the country.
GEMSS demonstrates that a patient organisation such as the MS Trust, with the right expertise in evaluation and strong relationships with the NHS, can play a key role in developing services. The project has generated significant wider interest amongst the specialist nursing community and has inspired the charity Dementia UK to evaluate their services.
Building on the work undertaken in the GEMSS programme, in Autumn 2015 we launched an innovative one year project MS Forward View. This will look at how MS services can provide greater access to care and how we can best use current resources and skills to ensure that everyone with a diagnosis of MS has access to high quality services.
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