Physical Health United Kingdom Project #8310

Specialist nurses for people with MS in the UK

by Multiple Sclerosis Trust

Specialist nurses for people with MS in the UK

Project Report | Oct 31, 2013
MS Trust working to safeguard MS nurses' posts

By Jo Sopala | Director of Fundraising and Marketing

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.”

We are delighted to hear that the MS nurses' challenge was successful and the threat was withdrawn.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.

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MS Trust working to safeguard MS nurses' posts

29 October 2013

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.

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Jul 18, 2013
GEMSS the story so far

By Stephen Trousse | Senior Communications Officer

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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Mar 12, 2013
MS nurses going the extra mile

By Laura Percival | Fundraising Officer

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.

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