Access to Specialist Neuromuscular Care in Wales

Access to Specialist Neuromuscular Care in Wales: Cross Party Group on Muscular Dystrophy Review

CALL FOR EVIDENCE 18 November 2009

1 The Cross Party Group (CPG) on Muscular Dystrophy is conducting a Review into service provision for people with muscular dystrophy and related neuromuscular conditions across Wales. The CPG is chaired by Dr Dai Lloyd AM and is made up of a cross party group of Assembly Members. It aims to raise awareness of muscular dystrophy and related neuromuscular conditions amongst Assembly Members.

The Review will focus on a variety of issues which include:

 What constitutes specialist multi-disciplinary care;  The experiences of people with muscular dystrophy;  Disparities in service provision;  Commissioning and funding;  Role of care coordinators and social workers;  Workforce planning;  Provision of wheelchairs, equipment and orthotics to enable and promote independence and self determination.

The Review wants to hear the views of those people in Wales who are affected by muscular dystrophy and related neuromuscular conditions and those clinicians and health professionals who have a direct interest in the provision of services for this group of patients. We would also like to hear from those people who are responsible for the commissioning of these services and for workforce planning in the NHS.

The Building on the Foundations in Wales campaign launched last year by the Muscular Dystrophy Campaign has highlighted distinct differences in the quality of service provision for people with muscular dystrophy and related neuromuscular conditions across Wales. One year after the publication of the Neurosciences Review, access to many essential services has been greatly

2 reduced and some services have such little clinical support that they are in real danger of becoming unsustainable. The formal Terms of Reference for the Review are: “To determine the current provision and quality of specialist services in Wales for people with muscular dystrophy and related neuromuscular conditions; to highlight areas of best practice and recommend possible solutions where improvements are necessary.”

Key areas this Review will consider

1. Is specialist multi-disciplinary health care available across Wales? If yes, which sections of specialist multi-disciplinary care work well and which sections require significant improvement?

2. What are the views regarding the wide variety in the quality of health services across Wales?

3. What obstacles are currently in place preventing improved access to specialist services?

4. What measures need to be taken by local authorities to ensure that high quality care and support services for people with muscle disease are provided?

5. Is sufficient information being given to people with muscular dystrophy and related neuromuscular conditions when diagnosed in terms of the specialist health services that are available to access?

6. What barriers are being faced regarding the commissioning and funding of specialist services for people with muscle disease?

7. Are the issues surrounding workforce planning being addressed across all of Wales?

3 8. Are patients and families able to access support and information from key workers / care coordinators? Written evidence submissions

Written evidence submissions should be sent to Dr Dai Lloyd AM, Chair of the Cross Party Group on Muscular Dystrophy, at the Wales Review Secretariat, Muscular Dystrophy Campaign, 61 Southwark Street, London SE1 0HL, or by email to [email protected]

It is kindly requested that respondents’ contact details be included with the written evidence submission. The Review will accept evidence either in the format of responses to the questions or in letter format. Evidence provided may be included in the final report and if anonymity is required, this should be stated clearly in the submission.

About Muscular Dystrophy

There are more than 60 different types of muscular dystrophy and related neuromuscular conditions. It is accepted that approximately 1,000 children and adults for every 1 million of the population are affected by muscle wasting neuromuscular diseases in the UK. Therefore it is estimated that some 3,000 people are affected by a neuromuscular condition in Wales. Many neuromuscular conditions are low-incidence conditions and indeed some are very rare and are regarded as ultra orphan. Neuromuscular conditions can be genetic or acquired.