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.
Feb 24, 2016

How has the MS Specialist Nurse role developed?

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.

Thank you for helping to support this vital work with your generous donations.

Dec 8, 2015

MS Decisions

Sharing Knowledge

Our Information Team at the MS Trust not only deals with enquiries through the telephone service, website forums and emails but through the booklets and factsheets they produce too.

These publications include information on symptoms, medications and treatments.

This year the MS Trust has worked with health professionals, people with MS and other MS charities to try to create a new focus on treating relapsing remitting MS as soon as possible. We believe there’s increasing evidence that early treatment improves the chances of people with MS staying healthy in the long term.

 

Help to consider drugs for MS

However, working out which treatment is right for you can seem more complicated than ever. The range of options for MS treatment has expanded significantly in recent years. There are now 11 disease modifying drugs licensed for treating MS in the UK. They’re each taken and monitored in different ways, and they each have their own benefits and risks. What’s more, not all of them are available in all parts of the UK.

 

Back in 2004, the Department of Health launched a website called MS Decisions. This was designed to help people find out more about MS treatment options. Thousands of people visited the site and found the independent information useful. However, over the years, the information didn’t keep pace with the changes in MS treatments.

 

This year the MS Trust took over responsibility for MS Decisions. We wanted to update it so that it offered reliable, independent information on all the MS drugs now available – and make sure it remains accurate as new treatments become available in the years to come.

 

Clear and accessible information

But we also wanted to make sure that the information was presented in a way that made it easy for people to MS to see what options were available, consider the factors that are important to them, and compare MS drugs in a simple, intuitive way.

 

We’ve worked closely with people with MS, MS nurses and neurologists to develop the new MS Decisions. The site now features a guide to making your decision, full details about all of the drugs, a list of common questions, as well the decision aid.

 

We’ve also redesigned our booklet Disease modifying drugs to complement the site and to help people with their MS become better informed and have more productive meetings with their health professionals.

 

We can only do this thanks to donations from people like you.

Dec 1, 2015

Large scale evaluation by MS Trust reveals vitally important MS services face critical challenges

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.

 

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