WAMES took part in the 2nd Welsh Government Task & Finish Group meeting for ME/CFS on 21st February. The Terms of Reference for the group were confirmed as:

The Task and Finish Group will provide expert advice to the Welsh Government and NHS Wales. Advice should constitute a strategic approach to improving services for people with ME/CFS and Fibromyalgia in Wales, with the aim that:

  • All children and adults with ME/CFS and Fibromyalgia should be treated with dignity and respect and receive support on an equal basis with people receiving support for any other long term health condition, both in primary care and when accessing support from a range of secondary services
  • NHS Wales should be equipped to support patients to manage their conditions (insofar as possible), using effective and evidence based interventions (where available)
  • A consistent level of support should be provided across Wales, eliminating the ‘postcode lottery’ and over-reliance on a small number of individuals with an interest in these conditions

The group was told by the Health Minister that there would be NO additional money to develop services and that all services should follow the principles of prudent healthcare.

The Group will provide a short report and make recommendations to the Minister in the following areas:

  • Implementation of the pathways recommended by the original ME/CFS and Fibromyalgia Task and Finish Group
  • Raising GP awareness of ME/CFS and Fibromyalgia, to support timely diagnosis and effective management
  • Identifying/appointing clinical champions in each local health board and a ‘home’ for these services; this coordinating role could be taken by any one of a range of specialities but should not be located within mental health services
  • Establishing stakeholder groups to implement and adapt pathways in a locally sensitive way
  • Identifying and implementing improvements to services for children and young people and ensuring effective transition from paediatric to adult services
  • Developing and implementing practical solutions for hospital attendance where required and for domiciliary or remote care for patients too ill to travel to appointments
  • Any requirements for additional guidance for training purposes, to raise standards, to support action-planning in health boards and to enable audit of service delivery
  • Mechanisms to support implementation of the recommendations

Subject to Ministerial agreement, recommendations would result in letters to Chief Executives of Health Boards, asking them to implement the recommendations. It is proposed that progress in delivery would be supported and monitored by an Implementation Group.

The third and probably final meeting of the Group will take place on 9 May.

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