Support specialist nurses for people with MS

 
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Heart of MS care
Heart of MS care

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.

Links:

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.

Links:


Attachments:
MS Nurse Consultant Karen Vernon
MS Nurse Consultant Karen Vernon

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.

Links:

> Our GEMSS programme helps safeguard the role of an MS nurse at Northumbria NHS Trust

> The programme enters its second phase with ten new teams from around the UK

Last year we ran a pilot project called GEMSS (Generating Evidence in MS Services) helping four MS services around the UK measure the impact of their work so they can demonstrate to managers what a vital, cost effective service they deliver.

Because of a lot of this work is about managing data and writing reports it can sometimes feel a little abstract: what practical difference does it make to you if you’re affected by MS?

Well, we’ve recently found out that our work has been instrumental in keeping Miriam Forster, an MS nurse in Northumberland, in a permanent post. This means that people with MS in the region will continue to have access to high quality, expert MS care.

Northumbria NHS Trust covers one of the largest areas in the country. Because of the distances many people with MS aren’t easily able to access clinics. In the last year Miriam and her colleague Jane Metcalfe travelled over 18,000 miles, making sure that everyone with MS, no matter where they live, was able to receive expert advice and support in managing their condition.

However Miriam’s post was not permanent and was due to come to an end this year. With only one MS nurse covering such a vast area the service would inevitably deteriorate. Ultimately, with much more limited access to specialist support, advice and information, the wellbeing of people with MS could suffer.

But thanks to Jane and Miriam’s participation in GEMSS, and the evidence they were able to produce, we are delighted to report that Northumbria NHS Trust has now made Miriam’s post permanent. This is a great result for people with MS in Northumberland, but also for everyone affected by MS in the UK.

We’d like to thank you for supporting our work protecting MS services. We’re delighted to see it already making a real-life difference to people with MS. This year our GEMSS programme enters a new phase, with ten new teams of MS nurses and therapists. We look forward to helping them deliver even better services for everyone affected by MS.

Links:

Over the past few months, the MS Trust has been approached by a number of MS specialist nurses whose services are under threat.

The threats include downgrading of their posts, cuts to the number of nurses in the team and withdrawing funding for the service. In the drive to cut costs, the competence and experience of specialist nurses and the difference they make to people with MS needs to be proved to NHS managers and commissioners of services.

Whilst we acknowledge the need to find savings in the NHS, we are concerned about the impact of these threats to people with MS. Amy Bowen, Director of Service Development at the MS Trust, says:

“MS is a complex condition which requires the input of specialist nurses who understand the breadth of symptoms, treatments and interventions required. MS specialist nurses are uniquely skilled to provide information, support decisions between complex treatment options, help manage symptoms and support people with MS to be in control of their condition. Reducing access to MS specialist nurses is a false economy which will result in the NHS losing the vital knowledge and experience we have all worked so hard to build.”

Recently, the MS nurse team based in one of the larger MS centres in the UK faced downgrading of their posts. The MS Trust worked with the team, using the tools and skills we have developed through our GEMSS (Generating Evidence in MS Services) programme, to help them make the case for their service.

We are delighted to hear that the MS nurses' challenge was successful and the threat was withdrawn. This means that their posts are secure and people with MS will continue to receive the specialist service they need. One of the MS nurses from this team says,

“The support and impact of the MS Trust can never be exaggerated. My recent encounter with the MS Trust made me realise their significant role for MS specialist nurses: advocating, providing genuine support to secure their posts and fighting to secure services for people with MS. My MS team are forever grateful to them.”

We are currently working with a number other teams who have been in touch. This work is only possible thanks to our generous supporters. We will update you again soon.

 

MS Trust working to safeguard MS nurses' posts

Author: MS Trust

 

Over the past few months, the MS Trust has been approached by a number of MS specialist nurses whose services are under threat.

The threats range from downgrading of their posts, cuts to the number of nurses in the team or withdrawing funding for the service. In the drive to cut costs, the competence and experience of specialist nurses and the difference they make to people with MS needs to be proved to NHS managers and commissioners of services.

Whilst we acknowledge the need to find savings in the NHS, we are concerned about the impact of these threats to people with MS. Amy Bowen, Director of Service Development at the MS Trust, says:

MS is a complex condition which requires the input of specialist nurses who understand the breadth of symptoms, treatments and interventions required. MS specialist nurses are uniquely skilled to provide information, support decisions between complex treatment options, help manage symptoms and support people with MS to be in control of their condition. Reducing access to MS specialist nurses is a false economy which will result in the NHS losing the vital knowledge and experience we have all worked so hard to build.

Recently, the MS nurse team based in one of the larger MS centres in the UK faced downgrading of their posts. The MS Trust worked with the team, using the tools and skills we have developed through the GEMSS (Generating Evidence in MS Services) programme, to help them make the case for their service. We are delighted to hear that the MS nurses' challenge was successful and the threat was withdrawn. This means that their posts are secure and people with MS will continue to receive the specialist service they need. One of the MS nurses says,

The support and impact of the MS Trust can never be exaggerated. My recent encounter with MS Trust made me realise their significant role for MS specialist nurses, advocating/ providing genuine support to secure their posts and fighting to secure services for people with MS. My MS team are forever grateful to them.

We are working with the other teams who have been in touch and encourage anyone else facing the same threat to email or call Amy Bowen on info@mstrust.org.uk or 01462 476700.

Links:

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Organization

Multiple Sclerosis Trust

Letchworth Garden City, Hertfordshire, United Kingdom
http://www.mstrust.org.uk/

Project Leader

Laura Percival

Fundraising Officer
Letchworth Garden City, Hertfordshire United Kingdom

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