Specialist nurses for people with MS in the UK

Vital NHS services that people living with MS rely on are facing increasing pressures which could lead to inequities in care, according to a major new report published by the MS Trust today.

 Evidence for MS specialist services, the findings from the MS Trust’s three-year GEMSS evaluation project, provides an unprecedented insight into the state of MS services, at a crucial moment in their development. Collecting data from 15 MS teams who provide services for over 15,000 people living with MS, it demonstrates the vital service that MS specialist nurses provide, the value they deliver and highlights the challenges they face in providing care.

The report reveals that people with MS rely on their MS specialist nurse for expert knowledge, support and continuing, co-ordinated care, and are more likely to turn to them than any other health professional – including neurologists and GPs. Without them, people with MS say they would have to manage alone, or seek care from overstretched GPs or even A&E departments without specialist knowledge and experience – at an increasing cost to the NHS.

The report highlights the critical challenges facing MS care. The data reveals that more and more of MS specialist nurses’ time is required to support people taking disease modifying drugs – and the MS Trust is aware of growing pressure to increase the UK’s comparatively low treatment rates. However, half of the people living with MS in the UK have progressive forms of the disease and are not eligible for these treatments. They have complex and challenging care needs, but with the greater focus on drug management, there are concerns that it will be increasingly difficult to deliver an equitable service for everyone with MS.

The report also reveals that that people with MS are finding it hard to access MS education and symptom management courses because of the pressures on specialist nurses’ time and resources. This training can help people living with MS manage difficult symptoms such as fatigue, pain, bladder and bowel problems, visual disturbances and mobility problems.

“We know from the feedback we receive every day that MS specialist nurses provide an incredible service to over 100,000 people living with MS in the UK,” said Amy Bowen, Director of Service Development at the MS Trust. “This report gives us the strongest evidence yet into the exact value of the care they provide. With new approaches to MS being developed and new treatments becoming available, we believe MS specialists nurses are going to become even more important in ensuring co-ordinated care for everyone living with MS. Following the success of this project, the MS Trust will continue to work closely with MS services to help them meet the needs of everyone living with MS.”

With its new MS Forward View project beginning in 2016, the MS Trust plans to work with MS nurses, neurologists, allied health professionals, pharmacists and other MS experts to show how MS services can provide greater access to care, making best use of current resources and skills, and still deliver value to the NHS.

About GEMSS

 The original impetus for GEMSS was the MS Trust’s 2012 report, Defining the value of MS Specialist Nurses. This report identified that MS specialist nurses (MSSNs) are highly valued by people with MS, but that there was little robust published evidence about their value and effectiveness.  MS specialist nurses were not routinely evaluating their services due to a lack of time, skills and tools to do so.  

 The GEMSS programme launched in 2012 and began working with MS specialist nurses to co-develop an evaluation framework and a set of tools and metrics for MSSN services. The aims are to build the skills and capabilities of the nurses whilst developing a culture of continuous improvement in the services evaluated.