Our Conference 2006 took place on Saturday 3rd June at The Glapwell Centre, The Green, Glapwell, Derbyshire S44 5LW

Forty one people attended the conference

Sheila Hawkins, Chair of the FSH Support Group, summarised achievements for the group in the last year which included:

• 46 new members, mostly through the FSH website
• An increase in the number of members who were taking part in running the group, particularly organising the conference, being a point of contact for new members and ensuring information about current research is placed on the FSH website
• e-circulation of information from the Genetic Interest Group
• Contributing to the development of the Healthcare Commission’s thinking about how it monitored services to people with long term conditions
• Greater links with the MDC campaign

Dr Margaret Phillips, Consultant and Senior Lecturer in Rehabilitation Medicine, University of Nottingham Division of Rehabilitation and Ageing, spoke about exercise and its impact on people with FSH.

She discussed the need for exercise to maintain health and reminded the group that people with FSH were just as likely to develop other conditions such as diabetes, osteoporosis etc and that regular exercise was important in preventing these conditions.

Although some people felt that they were unable to achieve five episodes of strenuous exercise a week there was evidence that any exercise was good, and that it was worth trying to achieve fewer than five episodes a week rather than none.

Dr Phillips also reviewed what research had been done on the effects of exercise and the use of albuterol on people with FSH, largely through a trial in the Netherlands by de Kooi in 2004. This trial took 65 people with FSH and divided into four groups as follows:

Although there were no significant improvements, the trial did show that exercise did not have a detrimental effect on people with FSH, which had previously been thought could be the case.

Michelle McGrath, Senior Physiotherapist at Derbyshire Hospitals NHS Trust, demonstrated how maintaining good posture impacted all parts of the body and got the meeting to control their deep pelvic muscles in order to improve the movement of their arms and legs.

Michelle also talked about various exercises and aides which could enable someone with quite limited mobility to continue to exercise to maintain what muscle power they still had.

Philip Butcher, Chief Executive of the MDC, talked about his vision for the organisation since he became CE a year ago.

There are more than sixty separate neuro-muscular conditions represented by the group, and all conditions are relatively rare.

He felt it was important to raise the profile of Muscular Dystrophy as a generic condition, and that this was best done by encouraging the various support groups to work together on areas of common interest such as:

• Information on neuro-muscular conditions for wheelchair service providers
• Information for children and siblings
• Ensuring that research was rigorous and did not favour or exclude one particular condition unnecessarily
• Campaigning to ensure people with neuro-muscular conditions received appropriate services

Philip also outlined the work of the MDC which includes the family support programme, the information services and the research programme.

Expert Patients Programme

Pauline Severn and Sheila North from Derbyshire Expert Patients Programme described the programme, a six week course which is designed to help individuals with any long term condition or illness better manage their condition and thus have more control over their lives. This was illustrated through an exercise on free thinking about ways to deal with problems with breathlessness and a relaxation exercise.

There was some discussion within the group about how health care professionals and their response to the programme but one member of the group who had done the programme thought that it had helped her better plan any consultation with health care professionals and Michelle McGrath said that she had observed that patients who had undergone the programme were more confident and able to say what treatment/exercise was working for them.

Further details available from www.expertpatients.nhs.uk

Dave Ward, Policy and Campaigns Officer at MDC
Following on from Phillip Butcher, Dave outlined the campaigning stance of MDC which was that most people with any kind of MD were likely to need similar services which might include, physiotherapy, orthotics, adaptations at home, wheelchair services etc, and that these should be offered as the norm rather than according to where people lived and whether they had a sympathetic GP or access to the right consultant.

He illustrated this by asking how many people in the room currently had physiotherapy, and how many more thought it would be helpful to them, following the presentation from Michelle McGrath.

At the moment there is a National Service Framework for Long Term Conditions but this doesn’t put any requirements on PCTs to provide particular services. The MDC is currently working to get MD put on a Department of Health list (National Definition Set) of rare conditions where PCTS are required to provide specific services.

Dave is currently collecting information about how people were able to access services, where services were good, or very poor, and how these could be improved. Where individuals had specific issues they wanted to highlight they should e-mail the details to d.ward@muscular-dystrophy.org

Sheila ended the meeting by thanking all the speakers and reminding members there were opportunities to get involved with the group, and that she would be encouraging a discussion about how the group could develop and a questionnaire has been sent out to all of our members.

She also requested help from group members in finding a suitable venue for the next meeting, with the benefit that the next meeting would be in a place that was convenient for them.

The meeting closed just after 4.00.p.m.