The theme for the day was "Keeping Well with FSH". To help us achieve this we were pleased to welcome our guest speakers for the day: Nick Emery head of physiotherapy at the Neuromuscular Centre, Winsford Cheshire; Carolyn Evans specialist neuromuscular nurse who is part of DR Ros Quinlivan’s team at the RJAH Orthopaedic Hospital Oswestry; Jane Stein Regional care advisor for the MDC based in Oxfordshire, and group member Stuart Watt, covering international cooperation in research into FSH.

As well as our speakers we were joined by Shukri Manseur and Sonia Day from Medicotech Ltd who demonstrated the Thera range of passive exercise cycles. We also had our three “Here to help” volunteers Louise, Laura and Alison,. They were available to help members and to keep the day running smoothly.

The day commenced at ten fifteen with a welcome from our chairman Sheila Hawkins who expressed her delight at seeing so many new faces and hoped that everyone would find the day helpful and informative.

Carolyn Evans Our first speaker Carolyn Evans talked about her position as a specialist Neuromuscular Nurse. She explained that when attending clinic many patients have a wide range of problems. As well as the more obvious problems that having a neuromuscular condition brings there are often hidden problems that patients often find difficult to discuss.

Carolyn regularly finds herself dealing with many issues ranging from patients needing help with walking aids, personal care or problems filling out forms for benefits right through to helping people considering Scapular Fixation procedures. She also explained that Dr Quinlivans clinics are able to offer a wide range of services including physiotherapy, orthotics, gait clinics and surgical procedures all under one roof. This means that patients are often able to access several departments in one day so avoiding the need of waiting for or travelling to different appointments

Our next speaker was Nick Emery from the Neuromuscular Centre Cheshire. Nick is head physiotherapist and explained his role and that of the centre in relation to clients who present with a neuromuscular condition. His presentation covered the benefits of physiotherapy, exercise, diet and nutrition along with complimentary therapies.

Nick explained that when attending the centre clients first have an assessment, as well as covering their individual physical problems, consideration is given to other problems the client may be having such as the use of equipment to maintain mobility. He stressed that everyone is

By having physiotherapy on a regular basis constrictors of the muscles could be alleviated and muscle tone maintained to enable some form of mobility to continue. This is achieved by using various methods including passive stretches, assisted standing, active exercise gait training and hydrotherapy. FSH–MD is the only MD that can cause pain this varies from person to person in intensity; some pain can be alleviated with physiotherapy. A good diet is essential as with reduced mobility come problem that faces many, by eating more calories than our body’s burn off then body weight will increase, adding more stress to already weakened muscles.

Nick then moved on to complimentary therapies although there was no evidence that any of them worked his advice was "if they made you feel better then carry on using them". Nick finally explained the procedure for attending the NMC. All that is required is a referral from your GP or consultant, after your initial assessment you may be offered a range of treatments including physiotherapy, if you decide to go ahead the centre will contact your local PCT who will usually fund your treatment if they don’t the centre will cover the cost of treatment at no cost to you.

Patients travel from all over the country to attend and once you have attended you are on their books for good and should you stop going for what ever reason you can always return at a later date without a doctors referral letter.

After the morning coffee break we welcomed Jane Stein who is a regional care advisor from the MDC and is based at the John Radcliffe Hospital Oxfordshire. Jane is co author of the new "Adult Self management" pack recently produced by the MDC for adults with one of the many adult onset neuromuscular conditions.

The packs are designed to cover all aspects of living with a neuromuscular condition, and to answer all those questions you wanted to ask but never knew were to go to get the answers. The pack contains an A4 size folder packed with fact sheets and information and also includes a diary for you to keep records of hospital appointments etc so you can always refer back to it when needed.

Unfortunately it wasn't possible logistically to have them available on the day but there were cards in the welcome pack that everyone received so members could send off for their own copy.

Lunch was at 12.15pm and members enjoyed a two course buffet and coffee and still had time to chat with fellow members or try out the passive exercise equipment that was demonstrated by the staff from Medicotech Ltd which proved very popular.

The afternoon commenced with workshops with either Carolyn "Your Questions Answered" or with Nick "Keep It Moving". Members split into two smaller groups and alternated between workshops.

During the afternoon coffee break the numbers were drawn for our Easter egg raffle the lucky ten winners all received a Cadbury Easter egg, we raised £75 which has been sent to the Neuromuscular Centre Cheshire.

The final presentation of the day was from Stuart Watt who as well as being a group member is also a member of the European Steering Group. He attends conferences with other European FSHD organisations with the aim to increase funding, care and research while promoting the sharing of information.

Stuart began by telling us the aims of FSHD Europe which are to:

* Be proactive and involved to stimulate finding a cure
* Raise the profile through increased awareness
* Share best practice
* FSHD individuals and families' drive and commitment
* Develop extra funding sources
* Lobby more effectively to the EU
* Create a European database to assist with research

At present Belgium, Italy, Netherlands, France, Denmark, Slovenia and the UK are members but more are being invited. Stuart went on to discuss how FSHD Europe planned to achieve these aims.

* Stimulate collaboration and accelerate translational research pathways in FSHD
* Improve quality of life, promote FSHD in health policy, raise public awareness and promote best practices
* Project databases (to avoid duplications)
* Joint call for projects (basis research for the elucidation of disease mechanisms, development of therapies, clinical trials)
* Patient registry
* Translational research programs, joint data collections
* Facilitation of interactions between people involved in FSHD (patients, clinicians, researchers, agencies, industry)
* Research consortiums

We looked at care and social integration across Europe and the standards of care proved to be very varied. If anyone would like to contact Stuart to discuss his work please email him at: stuartjmwatt@hotmail.co.uk

Members then had time to chat and discuss the day's activities and there was also a last chance to speak with all our guest speakers. At 4.00pm Sheila Hawkins closed the day's proceedings by thanking everyone for attending and hoped they had enjoyed the day. Special thanks were extended to our guest speakers who had made such a valuable and informative contribution to the day.