On 16 September 2014 the Health Minister, Mark Drakeford, wrote to Local Health Boards drawing their attention to the Action Plan for improving services for people with ME, CFS and Fibromyalgia in Wales.
The Action Plan was devised by the ME/CFS and FM Task & Finish Group (which included WAMES), which met between December 2013 and May 2014, and looked at how to overcome the barriers that Health Boards face when providing services for patients, and is published as a Report and Recommendations. It is available on the WAMES website and will also become available on the Welsh Government website.
The 11 recommendations focus on strengthening pathway and service implementation arrangements and improving the patient voice in the process, not on discussing or defining the nature of ME, CFS and FM and the implications of that for treatments and management. Those discussions will inevitably take place at Health Board level between all the stakeholders.
The 9 main recommendations state that each Health Board should:
- identify an Executive Board member with responsibility for overseeing implementation of the recommendations below
- identify, by April 2015, an appropriate clinical lead or leads for ME/CFS and Fibromyalgia to take forward the recommendations and to identify a “home” for services for ME/CFS and Fibromyalgia. (not in mental health)
- identify relevant specialists and those with expertise or interest in developing services to establish a stakeholder group or groups (including patient representation) to support the clinical lead or leads in ensuring the effective delivery of recommendations 4-8
- develop effective local pathways for children and adults with ME/CFS and Fibromyalgia, by drawing on Map of Medicine pathways, Scottish Good Practice Guide, Neurological Delivery Plan and emerging guidance [& FM sources]
- undertake work to raise awareness of ME/CFS and Fibromyalgia in primary care, to support timely diagnosis and effective management of both children and adults
- identify the means by which they will provide support to people with ME/CFS and Fibromyalgia who need to attend hospital, or receive palliative care, as well as ensuring the delivery of care as close to home as possible, including the provision of telemedicine/home visits to severely affected patients unable to attend appointments via other means
- produce a practical, realistic and timed action plan to improve patient experience of services by people with ME/CFS and Fibromyalgia during 2015-2018, and report annually on progress
- release a representative (or representatives) to form an All Wales Implementation Group (which will also include third sector patient representatives)
- The Implementation Group to provide an All-Wales overview of service-improvement for ME/CFS and Fibromyalgia in implementing recommendations 1-8.
The report then goes on to highlight main problem areas that Health Boards need to address:
- Improving GP understanding and timely diagnosis
- Co-ordinating a range of health care specialists under clinical leads, not in mental health but not ignoring mental health needs of patients
- A clear pathway to be developed based on patient needs and utilising and developing existing professional interest and expertise
- Children’s services to include support from education and social care services and help transitioning to adult services. The practice of inappropriate pressure at attend school when ill and misdiagnosis of ‘Fabricated illness’ leading to child protection proceedings to be avoided.
- The lack of in-patient hospital services and home visits (domiciliary services) for the approximately 25% severely affected.
We are aware that everybody is very frustrated by the length of time this is taking and that no additional money has been allocated to this task. There is still a long way to go and it could be next year before patients and carers can get involved in local stakeholder groups to discuss patient needs with health professionals in their Health Board area.
On the plus side work is well underway on the development of a pathway in Hywel Dda. Hopefully this work will be of benefit to the other Health Boards and speed up the process there.
There are a number of things that we are particularly pleased have been included in the Report:
- A timetable and monitoring of progress at a national level.
- The importance given to the patient voice when developing a pathway and services.
- The use of the term ME/CFS, though we would have preferred the term used by the WHO: ‘encephalomyelitis’.
- Highlighting the Scottish Good Practice guide (which promotes the Canadian guidelines) and the need to heed emerging guidance.
- Highlighting the relevance of the Neurological Delivery plan to ME and CFS.
- Highlighting the key problem areas of timely diagnosis, misdiagnosis as a mental health condition or ‘fabricated illness’, attitudes to children and education, services for the severely affected.
WAMES will continue to be involved at a national and local level and push for speedy progress and will be hoping patients and carers all over Wales will be able to join in, when the time comes. We intend to join Health Boards in looking for constructive solutions to service provision in less than ideal circumstances. It is hoped that as health professionals learn more about the nature of ME and patient needs, they will become as keen as us to see services improve.