Support specialist nurses for people with MS

 
$6,448
$83,553
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Remaining
Sep 5, 2014

Significant shortfall in the number of MS nurses

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.

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May 29, 2014

21 years supporting MS Nurses

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.

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Feb 6, 2014

Securing services for people with MS

> 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.

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Oct 31, 2013

MS Trust working to safeguard MS nurses' posts

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:

Jul 18, 2013

GEMSS the story so far

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.

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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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