Support specialist nurses for people with MS

by Multiple Sclerosis Trust
Vetted

It has been a big year for the MS Trust. We already support and train all the MS nurses in the country, but now we are going one step further by funding MS nurse posts in the areas that need them the most. Our aim is simple - that everyone in the UK with MS has access to an MS specialist nurse.

MS nurses, like cancer nurses, are at the very heart of the care needed by someone living with MS, and there simply aren’t enough. In fact, our research has shown that 2 in 3 people with MS – around 68,000 – live in an area where there are not enough MS Nurses, and too often people are being left to manage their MS alone and without the specialist care they need. Those with progressive MS in areas where there is a shortage are particularly vulnerable.

We estimate that at least 58 more MS Nurses are needed and it will cost the MS Trust £46,000 to fund, train and support just one new MS nurse for a year. This is a huge undertaking for a charity of our size, but one that we need to do.

I recently met an MS Nurse called Mhairi from Lanarkshire - the only MS Nurse in Lanarkshire in fact. She looks after about 1,500 people with MS, even though it is thought that the most any one nurse can manage is 358. She works very long hours to try and get to everyone because if somebody needs her, she can’t just leave them waiting. When she heard about the MS Trust funding new MS nurses she had this to say: 

“Another MS nurse would make a massive difference. We could spend more time looking at people’s pain relief, mobility and independence. MS affects people in different ways and no two people’s care is the same, which is why specialist nurses are so critical.”                 

Mhairi is totally committed to the welfare of her patients, and it makes her so angry to know that some won’t get the care they need and deserve because despite her every effort, one MS Nurse just isn’t enough.

I know that some will wonder why the MS Trust as a charity is having to undertake this funding, and believe me we are not letting the NHS off the hook! The reality is that they are doing what they can with the resources they have. Nevertheless, we will continue to campaign for improved MS care, and a condition for every post funded is that the local NHS Trust take on this cost after 15 months.

We hope that you agree that until there’s a cure, supporting an MS nurse is one of the best possible ways we can help people with MS. And I just know that with the continued support of our wonderful supporters on Global Giving  we can do so much to make a real difference.

Yours sincerely,

Jo Sopala

Director of Fundraising

Working on patient surveys
Working on patient surveys

MS Trust patient survey service

GEMSS (Generating Evidence in Multiple Sclerosis Services) is the MS Trust’s flagship programme to collect evidence about how services work best for people with MS and develop NHS services for the future. As part of the GEMSS programme, the MS Trust developed a patient survey which proved to be the most valuable and insightful tool to help MS teams prove their worth and identify areas for improvement.

Although the survey service was initially only open to teams participating in GEMSS, the MS Trust soon realised this was a valuable service we could offer to all UK MS nurse and therapist teams.

Since January 2016, 15 MS teams have used the service, with 1,171 people with MS responding. The results have yielded vital feedback on the services, both in terms of the value of the MS specialist nurse support, but also in terms of how services might be improved to better meet the needs of people with MS.

Some examples of the feedback MS services have received:

“Over the past 12 months, the MS nurse (Natalie) has been absolutely fantastic… She helped me a lot in times of difficulties and uncertainties. And in particular she managed very well my past relapse earlier this year. I have been able to attend physiotherapy classes and receive psychological support. She couldn't be more helpful and I cannot be grateful enough.”

“I have had the same MS nurse since my diagnosis. She has been really good at making and taking the time to listen and be there. She has referred me to other professionals so I would get the help I needed. The MS nurses at hospital do a great job. I am really grateful.”

“MS specialist far more 'in tune' with disease and its effects. Also better at discussing medication... Produces more detailed reports for GP and neurologist.”

“I would like to have maybe quarterly meetings which I could attend with an MS nurse present and fellow MS sufferers. Like a group meeting to discuss and reassure about symptoms/relapses. I do feel isolated at times.”

“I would prefer to visit my MS nurse every 3 months rather than every 6. Especially as at present I only see the consultant yearly.”

Thank you

We are determined to ensure that people with MS receive the specialist support that they need. We believe the best way to achieve this is to work with the health professionals providing these vital services, to prove their worth and actively seek ways to improve their services.

We can only do it thanks to the generosity of people like you. Your support means that we can continue to support MS specialist nurses and make sure that no one has to manage MS alone. On behalf of everyone at the MS Trust and the 100,000 people living with MS in the UK, thank you very much indeed.

Links:

We’re here for MS nurses, so that they can be there for people living with multiple sclerosis (MS).

MS nurses have a huge and varied role.  From one patient to the next, they might be training someone on how to use a specific treatment, helping with benefit forms or advising a family on where to seek practical help in the home.  They are routinely described as ‘a vital lifeline’, ‘my guardian angel’, ‘the only one who understands me’.  But they can’t do their job alone. 

To provide the best care possible to people with MS they need a detailed understanding of the condition and up-to-date knowledge of treatments and the latest research. The NHS does not provide training to new MS nurses or ongoing professional development. That’s where the MS Trust comes in. Since 1999, we have trained every new MS nurse, providing them with the in-depth knowledge they need to help people deal with the complexities of MS.  And we take care of their ongoing professional development at the MS Trust Annual Conference; bringing together 300 multidisciplinary MS specialists and world class speakers to ensure MS nurses can access the latest developments on treatments, research and best practice. 

That’s not all we provide. Time spent in clinic is often limited and people don’t have time to get the answers to all of their questions. In order to offer comprehensive care and make a real difference to people’s ability to manage their MS, MS nurses need resources they can pass on to their patients. They need factsheets and books which contain trusted information and offer an additional source of support which can be referred to as needed. Of the 50,000 free publications the MS Trust sends out each year, 70 % is given to MS specialists to distribute as needed in their clinics.

Tracy, a mum living with MS “Living with MS is bearable knowing that someone cares, I am not alone and I have someone to go to if I need advice.”

You might think the NHS should fund these things but it doesn’t; we don’t receive any governments funding to provide this support. Which is why we are asking for your help.

We believe everyone affected by MS should have access to someone who understands how their condition can develop, who can arrange appropriate treatments and support and really can make a world of difference. MS nurses fulfil this vital role, but they can’t do it without our help.

Thanks to the generosity of MS Trust supporters we are able to secure the best quality of care for people with MS, now and in the future.

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.

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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Organization Information

Multiple Sclerosis Trust

Location: Letchworth Garden City, Hertfordshire - United Kingdom
Website: http:/​/​www.mstrust.org.uk/​
Project Leader:
Emily Long
Letchworth Garden City, Hertfordshire United Kingdom

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