In April 2012, the MS Trust launched the GEMSS project - Generating Evidence in Multiple Sclerosis Services - a year long project that will help to generate evidence about the tremendous value of MS specialist nurses. Since the first MS nurses were appointed back in 1993, their role has grown and there are now some 270 MS specialist nurses around the UK. The MS Trust has been at the forefront of developing the MS nurse workforce, providing specialist training as well as a competency framework which describes the range of skills and knowledge that they need to be effective.
People with MS consistently say how important MS nurses are in helping them to manage the complex range of issues with which they have to deal. Neurologists and GPs also acknowledge how valuable they are in freeing up doctor time and in providing specialist expertise. But despite this, MS specialist nursing in some areas is under threat. There are still parts of the UK without a nurse, or where the travel distance to the nearest nurse is too far. And more worryingly, in today's climate where NHS budgets are tight, some posts are not filled when people leave.
In 2010-11, the MS Trust commissioned a study to assess the evidence for the value of MS specialist nurses. The result was a report, Defining the value of MS specialist nurses, which found that MS nurses are short on robust evidence to show that their services are cost-effective, and that more work is needed to prove this to those who fund NHS services. The report also maps the nurse post around the country and shows how patchy coverage is.
The GEMSS project is the response to this work. Four MS nurse teams, representing 13 MS specialist nurses, have been selected to take part. They are based in Dorset (Poole Hospital and Dorset Disability Action), Sheffield Teaching Hospitals, Dudley Group of Hospitals and Northumbria Healthcare. The teams reflect the broad range of different MS nurse teams around the UK: acute Trust and community based, urban and rural, large and small.
In May, the teams came together for the first time, outside Sheffield, for an initial training workshop. The project will give the nurse teams involved the skills to measure the impact of what they do and demonstrate this clearly. In addition, it aims to leave a lasting legacy for MS nurse services more generally by developing a set of common quality indicators and data collection for MS nursing services - including a new patient survey.
Vicki Matthews, an MS specialist nurse in Southampton for many years and nurse adviser to the MS Trust said, "This project is developing tools and information that I wish I'd had 20 years ago that would have helped me greatly in my job". Tracy Dean, the newly appointed MS nurse in Dudley, said, "Even though we're from different places, we've all got the same passion, and same desired outcomes for our services". And Cheryl King, MS nurse at Poole Hospital said "As a specialist service we can be quite isolated. Coming together it's reassuring to see we share the same problems".
Amanda Cheesley, Long Term Conditions Advisor at the Royal College of Nursing and part of the GEMSS project steering group, said, "At a time when all NHS spending is in the spotlight, it is vital that the value of specialist nurses is clearly articulated, so that these roles which are so important to improving the lives of people living with long term conditions can be supported and built upon. We welcome the launch of this innovative project by the MS Trust."
Projects like this can only happen thanks to the generous support we receive from people who donate and fundraise on our behalf. Thank you for helping us to fight for MS specialist nurses.
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