#TimeForUnrestWales

 a campaign for recognition of ME and health equality

There is a Health and Social Care crisis for people with ME in Wales, starting with the struggle patients have to find an accurate diagnosis from doctors who understand ME.

The Welsh Government has had a plan to change that since 2014 – the Task & Finish Group Report and Recommendations – but NHS Wales has failed to take them seriously and  little has changed.

WAMES is therefore asking the Cabinet Secretary for Health:

to provide, as a matter of urgency, support and finance for a national training and awareness programme.

The Task & Finish Group Report describes the challenges:

For patients: achieving timely diagnosis for ME/CFS remains a significant challenge (5.1)

“Many patients still do not feel that GPs take them seriously and some continue to report experiencing hostility. Patients express concerns that GPs seem to have limited knowledge of their condition… 

Delayed and/or multiple referrals are common due to difficulty in identifying the condition and/or the most appropriate specialist, and diagnosis can sometimes take several years. Such significant delays in providing effective self-management support may result in considerably greater long term support needs.

Patient groups report that some GPs have a low understanding of the post-exertional nature of the condition, the sheer degree of physical debilitation which it can cause, sub-groups of patients and the range of severity that is seen. There are also difficulties with obtaining home visits where needed and with GPs understanding that, due to cognitive difficulties, patients may need a written summary of discussions.”

For GPs (5:1):

“GPs meanwhile face significant challenges in diagnosis and management because of multiple and complex symptoms and a historic lack of consensus on diagnosis and treatment. This is compounded by the lack of a clear referral pathway and the limited specialist interest in diagnosis or providing treatment once a diagnosis is reached…when they [Health Boards] provide training for GPs, sessions tend to be attended by those who already have an interest, without the knowledge spreading further.”

For Health Boards (5):

  • “limitations to the evidence base for appropriate interventions;
  • a shortage of professionals with specialist knowledge, interest or the confidence to diagnose 
  • few clinical champions within NHS Wales 
  • resource and financial constraints “

The Report recommends:

Recommendation 5: “Each Health Board should 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 

Health Boards should provide support to GPs to support people living with ME/CFS and Fibromyalgia to become experts in their own care and self-management, as well as providing clear pathways for referral for specialist support as appropriate. 

Recommendation 8: The All Wales Implementation Group to “provide advice on an All-Wales approach to the provision of training and support for GPs

WAMES has asked the Cabinet Secretary for Health & Social Services, Vaughan Gething, to #HelpNHSbeMEaware and:

to provide, as a matter of urgency, support and finance for a national training and awareness programme which takes into account:

  • The need to invite expert clinicians from outside Wales to take part – There are no medical experts in Wales available to share their knowledge, and if we wait for them to ‘miraculously appear’ there will be no training and awareness undertaken.
  • The controversy over aetiology, diagnostic criteria and management advice – It would be important to develop a strategy that accepts this current tension and informs staff about it.

Many NHS staff are happy to accept the current NICE guidelines (now being revised) whose treatment recommendations are based on a psycho-social understanding of CFS and partially based on research results that have been found to have been inaccurate).

On the other hand patients and some NHS staff know about the biomedical research revelations and understand ME to be a condition classified as neurological with neuro-immune-endocrine involvement.

Neither belief should be allowed to be a barrier to patients getting a diagnosis and accessing medical care and other support. e.g. A medical diagnosis is necessary to access social care, transport, educational adjustments, benefits etc.  Without social care severely affected patients can live in squalor and extreme distress.

Carers are collapsing under the strain of caring for their loved ones alone.  The right of patients, including children,  to choose the care they wish should be included as a theme running through the programme.

  • The need for a standard training / awareness programme for use across Wales – Experienced trainers need to develop a programme so that an even standard is achieved, in spite of the lack of local knowledge, the controversies surrounding the illness, and the limitations of outside experts with no knowledge of the NHS in Wales. This programme should also give staff the opportunity to hear the experiences of people with ME and CFS.
  • Funding for travel – The initiative could also fund clinicians to attend major conferences and workshops in England, where they can learn from international researchers and experienced clinicians.
  • Ongoing programme – There is a need for Health Boards to hold ongoing awareness sessions to ensure a wide range of staff are reached over a period of time.

Much work is needed to put ME & CFS on an equal basis with other neurological conditions!

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One Response to #TimeForUnrestWales – the struggle to get an accurate diagnosis

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