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

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.

Links:

Oct 31, 2013

Explaining multiple sclerosis

Because multiple sclerosis is such a diverse condition, and no two people experience exactly the same symptoms, it can sometimes be tricky to explain to friends, families or colleagues just what it is, and why you might be having certain problems. To help make this a bit easier we’ve just published a new edition of our popular book, MS Explained, which you can order free or read online as a PDF

Like all our publications, MS Explained is provided free to those who need it, thanks to the generous support of donors like you. It costs us about £5 to research, write, produce and post a single book to someone with MS.

To mark the publication of the new edition we spoke to one of the book’s authors, Alison from our Information Team.

What does MS Explained cover?

It gives a basic introduction to the central nervous system, the immune system and what MS can do to the body. It also looks at the possible causes of MS and highlights research and areas where advances might be made in the future.

How popular is MS Explained?

It’s our third most popular book. Since 2004 we have sent out over 40,000 copies.

How long have you been working on this update?

I’ve been working on this update for the last eight months. The first part of the process is checking the literature to see what has dated in the old edition. Then a first draft is put together with the updated information. This goes out to review to three groups of people:

  • other members of the MS Trust Information Team
  • people with MS
  • health professionals who work with people with MS

Once we’ve got their comments we consider them, and decide whether to incorporate them into a second draft, which is then internally reviewed. Finally a third draft is completed, which is then sent to our designer for layout and printing.

What are the major changes for the new edition?

The most noticeable changes are to the ‘Future research’ section which has been updated and expanded. Also, as a result of feedback, we’ve changed the order of the contents. We also wanted to build on the glossary and explain more of the terms used in the book that people living with MS may hear regularly.

What’s the lifespan of this edition?

This edition will be reviewed in three years time. The MS Trust is a certified holder of the Information Standard. This means we’ve undergone an assessment to show that the information we produce is clear, accurate, impartial, evidence-based and up to date. To maintain our certification we have to review our publications at least every three years.

Links:

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