Information Team news
Way Ahead 2008;12(4):14-15
- Revised edition of DMT booklet currently underway
- MS Decisions website to be fully updated
- Progressive MS chatroom
- Put your service on our map of local MS services
- MS Explained - new and updated
- MS Trust information service
- Other publications to look out for
Revised edition of DMT booklet currently underway
'Disease modifying drug therapy: what you need to know' has proved to be one of the Trust's most popular publications. There have been a number of important developments in the presently available disease modifying therapies since the 2007 publication, and the MS Trust is using this as an opportunity not only to update the content of the publication, but to reassess the book's purposes and uses. For people with MS, embarking on a course of treatment on any one of the available disease modifying therapies is a big and often daunting decision to make. The MS Trust would like people with MS to have a reliable and un-biased source of information that supports them in making this decision in active partnership with their health professionals.
- If you have any observations that would help with the revision, please email info@mstrust.org.uk
MS Decisions website to be fully updated
MS Decisions is a web-based patient decision aid for people considering treatment with disease modifying drugs. The site was originally funded by the Department of Health and developed by a number of neurologists and MS nurses, people with MS and MS organisations, and was launched in 2004. It is still visited by over 100 users per day (over 38,000 in the last year), the majority of whom are in the UK. However, recent developments mean that the website, whilst still valuable, is out of date. A project to revise and re-launch the website is therefore underway, led by a steering group chaired by Professor Alan Thompson at the National Hospital. It is hoped that the revised site will be launched by the end of 2008.
- If you have any comments on the site or would like to know more, contact Geraldine Mynors, MS Decisions Update Project Manager
Progressive MS chatroom
On 25 September the MS Trust hosted a chatroom offering people affected by primary or secondary progressive MS the chance to share their experiences and to ask questions of health professionals on the subject of progressive MS.
Put your service on our map of local MS services!
Are you using the MS Trust's map of local services? We certainly do hope so! If you do not have an entry on our map, or your details have changed then please let us know! We would really urge health professionals and people with MS to use the map to its full potential - it is an excellent resource that is constantly being updated with further information about MS services and other useful groups across the UK.
Enhancing the usability of the map, Google map technology features the following functions:
- Identification of specialised services - use the drop down menu to select the service you are looking for. Coloured markers help locate local services.
- Zoom function allows you to focus on a particular area or locality within the UK.
- Navigate the map - use the arrow buttons to span across different areas of the map.
- View address and contact details for the service with a left click of your mouse over the marker
MS Explained - new and updated
A revised edition of the MS Trust's popular publication, MS Explained, will shortly be published. The publication is aimed at anyone who wants to understand the mechanisms of MS and what is causing things to go wrong. It describes the immune system and the central nervous system and then explains how MS is thought to cause them to malfunction and the symptoms that result. The latest version of the publication features an expanded section on research in MS and potential future therapies.
MS Trust information service
Every month, the information team at the MS Trust takes some time to audit the service we are providing. This offers us an opportunity to discuss trends in enquiries and demand for publications, and identify any gaps in the information available to people who use the service.
The MS Trust information team receives email, telephone and postal enquiries from people with MS, their friends and family, and the health and social care professionals who are working with them. While we are talking to these people about a range of issues on a day to day basis, without the help of our records and the statistics we can extract from them, it is difficult for us to identify any emerging patterns in the nature of the enquiries we receive and the information that people are requesting. It is for this reason that we rely on the use of statistics to paint a wider picture of the ever evolving information needs of people with MS and their health professionals.
Over the last three months, the following statistics have revealed:
What are the most common personal enquiries?
For personal callers, symptoms and treatment is the biggest category of enquiries. Within this category, fatigue, pain and continence problems are the symptoms most commonly reported. Interestingly, the treatments/ therapies that were most frequently discussed included Sativex, cannabis and vibration therapy.
What are the most common health professional enquiries?
The service most frequently requested by health professionals was literature searches and reference requests. Health professionals most often requested this service to support an area of their research or service development. Over the past three months alone, we have sent out 170 copies of papers and items from our collection of textbooks. Location of services was the next most frequent enquiry by health professionals.
What are the most popular publications for personal enquirers?
For personal enquirers over the last three months the following publications were the most frequently requested:
- Falls: managing the ups and downs of MS
- Move it for MS DVD
- Living with fatigue
- Therapists in MS
- Diet factsheet
What are the most popular publications for health professionals?
For health professionals, over the last three months, the following publications were the most frequently requested:
- Falls: managing the ups and downs of MS
- Living with Fatigue
- MS: What does it mean for me?
- Exercises for people with MS
- Young persons guide to MS
The MS Trust operates an information service Monday-Friday 9am- 5pm. The team can help identify MS services or individual contacts across the UK; provide updates on progress or development of various treatments and trials; and identify the 'media triggers' that prompt interest in specific treatments or therapies.
In addition to these more general enquiries, health professionals are encouraged to contact the team if they require literature to support any aspect of service development. The MS Trust can provide comprehensive reference lists and papers that support general MS services; MS nursing services; multidisciplinary or rehabilitation teams; physiotherapy and many other areas of practice that have direct impact upon the quality of life for people with MS.
We also provide support for students completing dissertations on MS-related topics and health professionals looking for career development through further study.
- Contact the information service or ring us on 01462 476 700
Other publications to look out for
Risks and benefits of treatment
'Finding the Balance: Benefits and risks of medical treatment.' This publication by the ABPI and the Long Term Conditions Alliance provides a first look into the benefit risk calculations central to many treatment interventions. The themes and many of the ideas in this document emerged over the past year, beginning with a large conference held at the end of 2006. Finding the Balance, run jointly by the ABPI and the LTCA, set out to address the following areas:
- a common language for benefit and risk
- the quality of information available for decision making
- why information isn't everything -making room for difference
- personal responsibility vs protection from ourselves.
This document stresses the importance of the informed and involved patient and suggests ways forward through initiatives with a call for further input.
End of life
'Exploring the interface: A survey of neurology nurses' involvement with specialist palliative care services and identification of their training needs.' This document provides results of the survey of neurology nurses that was carried out jointly between National Council for Palliative Care and the Royal College of Nursing Neuroscience Forum. 88 neurology nurses responded to the survey, 56% of whom looked after people with multiple sclerosis. The survey found little evidence of joint working with specialist palliative care services and that few nurses used local referral pathways. The survey identified the need for greater collaboration between all people caring for those with neurological conditions towards the end of life. The report also recommends the use of the Final Pathway developed by the NCPC's neurological conditions policy group. The Final Pathway is a neurological care pathway that has been designed to support professionals in meeting the palliative needs of people with long term neurological conditions.
- View the pathway or purchase a copy of the survey on the National Council for Palliative Care website
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Disclaimer
Way Ahead articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.
