MS Trust research was commended in July at the Royal College of Nursing as an example of good practice for demonstrating the impact of public services. Here we look back on the first year of our GEMSS project, and look forward to some exciting developments ahead.
At the MS Trust we believe that one of the best ways to help people with MS is to support their specialist nurses. Since 1996 we’ve been leading the way in campaigning for and supporting their work. We funded the only research project which shows that, as well as being vital to people with MS, MS specialist nurses also save money for the NHS by keeping people out of hospital. We estimate that a single MS specialist nurse, with an average caseload of around 250 patients, can save the NHS around £65,000 a year.
However, in recent years we’ve had to step up our work. As health budgets grow tighter, specialist MS nurses are under increasing pressure to demonstrate the impact of their work or risk having their funding removed. Some nurses have been asked to return to ward work, while some positions have become vacant (due to leave or retirement) and not been filled.
This is why we’ve been working to help MS nurses demonstrate the impact of their work, so they can make the strongest case possible to managers and commissioners about the importance of their role.
Over the past year we’ve been piloting a project called GEMSS: Generating Evidence in Multiple Sclerosis Services. We recruited MS teams from Northumbria, Dorset, Dudley and Sheffield and worked with them to develop tools to enable them to collect and analyse data on their service, so that they can demonstrate the difference their work makes to people with MS, and present this information to managers most effectively.
The pilot was a huge success, and has already been instrumental in keeping at least one nurse in post. “Without data our future is insecure,” said one nurse who took part. “But once the data is there it’s there and it’s quite easy to update. It helps us present a really powerful case to managers. Quite often they didn’t realise the service they were getting.”
This year we’re going to produce a companion piece to our report on the value of MS nurses called Defining the Value of Specialist Allied Health Professionals in MS. We will be showing why the knowledge of specialist therapists, such as MS occupational therapists, is crucial. And we plan to to roll out the GEMSS project further so that more MS services, and more types of MS specialist, have access to the tools we’ve helped to develop.
Thank you for helping to fund this work, which is already making a difference to MS services.
In the run up to MS Awareness Week (29 April to 5 May) we have been asking people to nominate their MS nurse for our Super Nurse award: an accolade given each year to a nurse that really makes a difference. We have had nominations in for more than 80 nurses so far, from all over the UK. For our latest report, I wanted to share with you some of the great comments that have been coming in from people with MS about their MS nurses. The nominations we've received really show what a difference MS nurses can make to individuals living with multiple sclerosis. “I had symptoms for nearly 20 years before diagnosis and was in a very bad place when I first met my MS nurse. She just knew, she understood and she helped so much that it felt as though I had been picked up and cradled, such was her empathy. She always finds a time to see you and goes out of her way to be there.”“My MS nurse is wonderful. He is totally reliable and is always there to answer questions. He monitors my medication every month and has a really positive attitude every time I see him. He always goes that bit extra and really cares for his clients. He is the most important person in our lives when it comes to anything related to MS.”“When I was diagnosed, my MS nurse was there to explain everything to me about treatments and therapies. She is always only ever a phone call away and is such a good listener. She has supported my family through what was initially a difficult time. She is just such a great person and I am very lucky to have her as my nurse.”“Despite caring for everyone in the county with MS, she makes me feel safe and cared for. She remembers everything. Without her I would be lost and alone.”Thank you for donating towards our MS Nurse Support Programme and for helping to protect MS nurses now and for the future. Our work continues to ensure that people living with MS get the vital support, expertise and reassurance that only MS specialist nurses can deliver.
Since the first MS nurses were appointed back in the 1990s, the MS Trust has been at the forefront of developing the MS nurse workforce. We believe that everyone with MS should have access to a specialist nurse. However, with the NHS currently needing to make big savings, the future of MS nursing in the UK is at risk and so we've had to take a tough look at how best to defend nurse posts against cost-saving measures.
As well as the obvious benefits specialist nurses can bring to people with MS, research has proven that they can actually save the NHS money. By making sure people with MS get the right care at the right time, MS nurses often prevent unnecessary hospital admissions and doctor consultations. But in order to secure funding for specialist posts when budgets are tight, commissioners need hard evidence that this is happening in practice - something many nursing services just don't have.
To tackle this problem head on, the MS Trust is working with four MS nurse teams across the UK to find the best ways to gather the evidence they need. We're arming nurses with tools to collect data as part of their regular routine and the skills to use that data to show how their services are making a difference. Once we have completed this initial stage, our GEMSS project (Generating Evidence in Multiple Sclerosis Services) will be rolled out to MS nurses across the UK. By understanding how to capture strong evidence of their quality and cost-effectiveness, MS nurses will be in a much better position to secure their services over the long term.
"Specialist nursing roles are very valuable and no one wants to see them go - you just have to make it 'easy' for people to say yes to employing them, based on real data" - Commissioner
In a recent survey of 58 specialist nurses, two thirds believed better data would help them defend against potential threats or cuts. Three quarters of them felt that they would be able to provide a better service if they could properly evaluate what they're doing. 90% of the nurses surveyed were interested in using the tools from our GEMSS project within their own services.
"The GEMSS programme has been an extremely useful tool for evidence, to highlight to others what our role entails. I feel privileged and inspired being part of the project." - MS nurse and GEMSS project participant
We will continue to fight for MS nurses and assist them in defending and developing their own services, but we can only do this with your support. Thank you very much for supporting this vital work.
MS is a complex diagnosis with an often fluctuating, variable and unpredictable pathway. This presents unique challenges to the health and social care professionals who work with people living MS. The impact of this complexity and uncertainty cannot be overstated.
MS specialist staff must keep up-to-date with the changing evidence-base, best practice, statutory guidance and therapies available to people living with MS. At present we are able to provide a limited number of study days and if more money were available, we would be in a stronger position to respond to new research findings. For example, research this year has shown that anxiety and depression are highly prevalent in people with MS, indicating that their mental health needs could be better addressed. The MS Trust would like to be able to develop an evidence-based master class in order to ensure that staff are better placed to address the mental health needs of people living with MS.
A relatively new factor that further complicates the support offered to people with MS is the creation of ‘neurological specialist’ services and posts. Where previously an MS specialist was available to people living with MS, they have in some instances been replaced with a ‘neurological specialist’ whose caseload is much wider than MS and incorporates other neurological conditions (Brain Injury, Parkinson’s Disease, Alzheimer’s, Epilepsy, Huntington’s Disease, MND, Spina Bifida, etc). The MS Trust already receives requests from some of these neurological specialists to attend some of the MS specialist master classes and study days but at present we are unable to meet this need.
Increased funding would allow us to develop and deliver a 3 day development module to ensure that neuro-specialist staff have the skills and knowledge required to support people living with MS and recognise their unique requirements amongst a wide and varied caseload.
We are grateful for your continued interest in our work to support MS specialist nurses and we look forward to updating you again soon.
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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