Multiple Sclerosis Trust

The MS Trust's mission is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. We work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.
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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Feb 6, 2014

A positive approach to multiple sclerosis

"A positive approach to multiple sclerosis" …that was the headline on the very first issue of our newsletter Open Door. As the MS Trust marks its 21st year we’re looking back at how our information service has developed in response to changing needs.

When the MS Trust was set up (initially as the MS Research Trust) in 1993, information was sparse. People were frequently told “You’ve got MS, learn to live with it”. What did exist was often too simplistic or too technical and more likely to frighten than to inform.

One of the first projects of the new charity was an information pack to provide balanced, realistic answers to the questions people had and to raise awareness of what was available to help people manage their symptoms and live their lives with MS.

In 1998 the MS Trust appointed its first Information Officer. Originally her role was mainly to support health professionals, particularly the first of the MS nurses who were starting to be appointed around the country. However, calls from people with MS quickly grew and the team began to expand.

The number of calls we receive has grown greatly. In 2001 there were 459 enquiries, half of which were from people affected by MS. In 2013 we received 2,714, with more than 80 per cent coming from people with MS or their family or friends.

The variety of questions reflects the wide range of issues that can affect someone living with MS – whether it’s from someone newly diagnosed and unsure where to turn next, or someone asking about treatments to manage their symptoms, to something more unusual such as whether having a tattoo might affect MS. Even when a topic appears several times, the response is rarely exactly the same as we try to match information to the caller’s particular needs and situation.

21 years on, the need for reliable, evidence-based information remains as strong as ever. People increasingly expect information to be available to help them make informed decisions about how they live their lives with MS. Whether through our website, our range of publications or through the personal enquiry service, the MS Trust continues to offer help in finding the information people need to live their lives.

Thank you very much for helping us to provide this vital service.

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.

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