The Scottish Muscle Network

Autumn 2008: the Scottish Muscle Network site is in the process of relocating to www.smn.scot.nhs.uk

Aim

The aim of the Scottish Muscle network is to improve the care provided to all Scottish neuromuscular patients, regardless of where they live, by ensuring they have access to local health, social and educational professionals who are informed about their condition and its complications and are aware of what can be offered by appropriate tertiary referral specialists.

Activities

• increasing communication between health, social and educational professionals and voluntary organisations.
• providing educational opportunities for professionals.
• creating a consensus for standards of care.
• providing patients with information about how the Health Service can help them.
• setting up a variety of ways in which patients and their representatives can communicate their needs to the service deliverers.

To achieve our aim the Network sets out to make most efficient use of existing NHS, social services and voluntary organisations throughout Scotland.

This allows sharing of experience and for many professionals, leads to greater confidence in managing these relatively rare disorders. The advantage for the patients is that they have access to the most up to date management, wherever they live in Scotland. In our first three years we have delivered over 9,000 person/hours of accredited Continuing Professional Development education.

We are co-ordinating a series of patient held care cards which outline the standard of care that patients can expect and allow them to become involved in their own management. This website also helps to inform patients and allows them to feedback their experiences.

The Network communicates via the Co-ordinator, Dr Alison Wilcox, by this web site and by our annual meeting which is held in September. The meetings attract over 220 delegates, so early booking is essential.

We also hold Winter meetings particularly for community paediatricians, physiotherapists, occupational therapists, health visitors, social workers, teachers and anyone else who has a professional interest in the management of the Neuromuscular disorders in the community.  Details of these meetings can be obtained from Dr Alison Wilcox and programmes are posted on the website. 

Patients have direct input to the development of the network. Elected members of the muscular dystrophy campaign are invited to the annual meeting together with an equal number of patients, as well as a multidisciplinary range of professionals. Regular open meetings are held for patients and their families, and half of each meeting is devoted to open discussion and feedback by the patients. The Muscular Dystrophy Campaign have been pleased with our development of the Network and are now using it as a model for establishing similar networks elsewhere in the UK. The Welsh Neuromuscular Network opened in 2003.

Financial Support

The Scottish Muscle Network is currently supported by Yorkhill Division, Greater Glasgow and Clyde Health Board and the University of Glasgow. From April 2004 until March 2006 it was supported by the National Services Division of the Scottish Executive. It was supported from July 1999 until March 2003 by the Muscular Dystrophy Campaign. We continue to have very close working links with the Campaign. Our activities are also supported by the Yorkhill Muscle Fund, The Yorkhill Children's Foundation, the Orchid Ball Foundation and the Myotonic Dystrophy Support Group. We are extremely grateful to the charities and individuals who have given us their financial support. If you would like to make a donation, cheques should be made out to the Scottish Muscle Network Fund, Yorkhill NHS Division.