The MS Trust has been able to continue to supply accurate and vital information for the people directly affected by MS, their loved ones and the health professionals working in the field of multiple sclerosis.
MS Nurses are a skilled and scarce resource. We recently conducted some research and produced a report; “MS Specialist Nursing in the UK 2014: The case for equitable provision.” We have identified several examples of MS nurses introducing efficient working methods. These included:
With the generosity of the MS Trust supporters we are able to develop and share our information for those affected by multiple sclerosis and provide vital education and support for MS specialists.
The 2014 MS Trust Annual Conference received 252 delegates (39 delegates attended courtesy of bursaries granted by the MS Trust.). The MS Trust Conference is the must-attend event for all health professionals working with people with MS. The conference provides an exciting programme covering the latest developments and research in treatments and therapies for all types of MS. There are a wide range of workshops delivered by experts aiming to give up to date, practical knowledge to those in the field. The conference also provides a great opportunity for health professionals to network together with others with an interest in MS.
Please view the MS Trust’s Annual Review online for more detail of how your money has helped us positively.
Many people assume that MS specialist nurses are trained by the NHS. That is not the case. In fact, the majority of specialist MS training and development in the UK is provided by us – the MS Trust. The MS Trust’s education programme costs over £300,000 to run each year.
Karen, Consultant MS Nurse “Since my specialist career began, the MS Trust has been a constant. From their outset they identified education of professionals as being key to improving patient care. The specialist education they continue to provide for nurses and therapists is unique. They engage with you, they listen to you, they know you. You’re not just another nurse; you are a person who matters, with views.”
Nikki, Clinical Nurse Specialist in MS “17 years ago there were less than 30 MS nurses, but even then I was able to attend MS Trust education events to support my clinical practice. This has been vital in enabling me to become a competent specialist practitioner. The MS Trust has developed, with input from nurses and other professionals, the national MS care pathway and the MS nurse competency framework, which we use every day to guide our practice.”
We believe MS specialist nurses and therapists offer the best care and support to people affected by MS, and that to do their job, they need regular opportunities to update their knowledge and expertise. The MS Trust runs a week-long residential course for all new in post MS specialists, which provides an essential foundation of MS knowledge in the early stages of their role. The knowledge gained from this course is then built on through our annual MS nurse meeting and multidisciplinary conference, bringing together the top opinion leaders in MS and the specialists who see people dealing with the realities of MS every day.
Pamela, Consultant Occupational Therapist “To everyone who supports the MS Trust financially, I’d like to say a huge ‘thank you’. The knowledge and support gained from them has helped me in all aspects of my work, which has had, either directly or indirectly, an impact on people with MS and their carers.”
We know not everyone has access to the MS specialist nurses and therapists they need, and we will keep fighting to get more. Through our GEMSS programme we continue to build the evidence for the value of MS specialists, identifying the areas needing additional support and working with commissioners. Whilst this work is going on, we must make sure we don’t lose the specialists we have and ensure that those currently in post have ongoing support and education which enables them to offer the best possible care.
Thank you for helping the MS Trust continue to develop and support MS specialist nurses in the UK.
At the MS Trust, we believe that people living with MS deserve the best possible care.
That’s why we’re launching a new campaign to make sure everyone affected by MS can get access to MS specialists (that is, specialist nurses, as well as physiotherapists, occupational therapists and other health professionals with expertise in MS). But we need your help to continue our work.
“I was signed off work. I was in a really bad place. And then I met an MS nurse. It was like someone had opened a window. The reassurance!”
Showing the difference MS specialists make for people with MS
Through our innovative national GEMSS programme, we’re working with MS specialists and developing new tools to help them show managers and commissioners how they offer the best, most effective care for people living with MS. As part of GEMSS, we are running a national survey service and are gathering the views of thousands of people with MS about how specialist care makes a difference to them. By supporting our campaign, you’re helping us to make the case for specialist MS care.
Training and supporting MS specialists to provide the best possible care
We train every new MS specialist nurse in the UK, making sure they can deliver the best possible care for everyone affected by MS and we offer a full range of training and support for physiotherapists and occupational therapists to gain expertise in MS. We also provide additional training as well as support and resources to make make sure all MS specialists stay up to date with the latest developments. By supporting our campaign, you can make sure we can continue this work.
Changing national guidance
We are disappointed that the new national Guideline for MS doesn’t go far enough in highlighting the importance of MS specialists. We want NICE, the national body that provides guidance to improve health and social care, to recognise the importance of MS specialist nurses as well as physiotherapists and occupational therapists with special expertise in MS. We want to raise the profile of these roles, help build the evidence for their value and to get NICE to acknowledge the difference that their services make. By signing up to our campaign, you’re adding your voice to this call.
Find out more about our Heart of MS Care campaign on the links below.
MS Trust report suggests another 126 MS specialist nurses needed in the UK
In March and April this year we carried out a survey of every MS nurse in the UK. The response was amazing - over 97 per cent of nurses responded. But the results were disappointing.We found that we don’t have nearly enough MS nurses to care for the more than 100,000 people in the UK living with MS.
We found that there are 245 MS specialist nurses in the UK and on average they support 550 people with MS. The recommended caseload is closer to 300. We estimate that we need at least 126 more MS specialist nurses to provide an acceptable service to people with MS.
Over the last 21 years we have campaigned for and supported the growth of MS specialist nursing. However, we are concerned that ongoing changes in the NHS could leave MS specialist services under threat. We hope this report is a timely reminder to NHS managers that we need more not fewer MS nurses.
In the upcoming months we will look more closely at the challenges facing UK MS specialist nursing. We will also analyse the regional variations in more detail so we can identify the areas where we don’t have enough MS nurses.
Thank you for supporting this project and helping us to fight for specialist nurses for people with MS.
This year the MS Trust is marking its 21st anniversary and as part of our 21 Stories project we asked Karen Vernon, MS Nurse Consultant in Salford and one of the early MS specialist nurses, to reflect back on some of the big developments for people with MS over the past 21 years.
In my mind, without doubt the biggest achievement over the past 21 years has been the development of specialist practitioners in MS, whether this is a neurologist, nurse or an allied healthcare professional. This has enabled the safe delivery of the disease modifying treatments to some patients, but ultimately more patients with MS have had expert care independently of whether they are on drugs or not, often from a multidisciplinary perspective. This has also acted as a catalyst for specialist networks which enables sharing of best practice, again enhancing care for all.
The support from the voluntary sector has been crucial in this. The involvement of the MS Trust in providing specialist education for practitioners has been invaluable. Very few specialist nurses in any field have the ability to undertake a development module such as the one the MS Trust runs, which enables them to have a foundation for practice. The MS Trust continuing support to specialist practitioners cannot be underestimated.
I think the biggest challenge for the next 21 years will be in maintaining and further developing services to reflect changing needs, both of people with MS and also the varying demands of the different drugs coming to license. The demands on the health service cannot be underestimated and it is essential that we do not allow MS services to become all about the drugs, and that we offer an equitable service to all people with MS.
I also think a major challenge will be the loss of a significant percentage of specialised practitioners' expertise through retirement. Succession planning is crucial in all aspects of the service and, again, the involvement of the voluntary sector in education is paramount, in order for services to continue to deliver high standards of care. How this is developed will again need to reflect changing needs within the healthcare community.
Karen Vernon, MS Nurse Consultant
The MS Trust works tirelessley to support the MS nurse workforce in the UK and with the help of donors like you, we will continue to do so, to ensure everyone with MS has access to the services they need. Thank you for your support.
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