Women’s Health Wales Quality Statement calls for improved care for women with ME
On Saturday 28th May, International Day of Action for Women’s Health, a report has been published by a coalition of charities and health organisations, which discusses how women in Wales have poorer health outcomes than men and urgent action is needed to ensure they receive equal care and treatment.
For the past year WAMES have been working as part of the #WomensHealthWales Coalition, made up of over 60 charities, patient representatives, clinicians, and professional bodies to draw up a plan to help end health inequalities experienced by women, girls, and those assigned female at birth.
ME affects more women than men,
in an approximate ratio of 4:1
(MERUK)
Scottish Government has a plan, UK Government has consulted on a plan for England, and now, Welsh Government has committed to drafting a plan for Wales.
Health inequalities are rife in Wales. Welsh Government’s plan needs to be ambitious in its aims to end systemic sex and gender health inequalities in Wales and it needs to be co-produced by both Coalition members, patients, and public.
What is the report about?
The Women’s Health Wales report is a collaborative, co-produced report that outlines 26 areas of healthcare where women, girls, and those assigned female at birth are disproportionately impacted. It includes a range of physical and mental health conditions and issues which might affect this population at different points in their lives and makes a series of recommendations we wish to see implemented to improve their health, lives, and wellbeing – both now and for future generations.
Recommendations for Myalgic Encephalomyelitis (ME)
The Report outlines the key issues which lead to difficulties for patients in accessing appropriate services in Wales and gives recommendations for ways the Welsh Government can contribute to the improvement in ME/CFS healthcare (p97-100):
~ Implement NICE guidance, removing GET and CBT
Ensure healthcare professionals are following the updated NICE guidance removing GET and CBT as treatments in rehabilitation clinics which include people with ME. Many patients with ME are also referred to the National Exercise Referral Scheme (NERS), but the lack of expertise or monitoring constitutes unsafe practice and has historically proven harmful to those with confirmed ME.
~All healthcare professionals should understand ME and PEM
Develop cross-team understanding of the nature and impact of people’s illness and ensure they are aware of the specific characteristics of ME so to provide appropriate patient-centred care. This includes a better understanding of ME’s main characteristic, which is post-exertional malaise.
~Develop medical pathways with the help of all stakeholders
Work with patient advocates, specialist groups, and clinicians to develop straightforward medical pathways for ME patients across Wales which should
include:
- Sufficiently trained GPs to identify specific characteristics of ME and
diagnose - Occupational therapy for day-to-day management
- Trained community nurses who can provide care and monitoring for those
who are housebound due to severity of condition or relapse - Access to additional specialist expertise wherever it is located
~Training for diagnosis
Increase training for GPs to diagnose and manage the condition. A 2016 patient survey found that over 60% had waited a year or more for a diagnosis.
~Good quality information for patients
Patients must be empowered to make informed decisions about approaches to symptom management and able to work in partnerships with their healthcare
professionals to co-design treatment plans/pathways which suit their individual
needs and experiences as part of a commitment to shared decision making.
~Support development of management plans
Urge service providers to provide support for healthcare professionals to implement
the NICE guideline’s recommendation of developing individualised energy management plans, which take account of the need for both rest & maintaining
physical condition.
~Medical training
Ensure co-produced training is delivered both to medical students and existing healthcare professionals.
~All-Wales commitment to recording diagnoses
Oversee an all-Wales commitment to ensuring GPs accurately diagnose and record incidence of ME using SNOMED system which enables health boards and service providers across Wales to understand prevalence and commission/ design services accordingly. Data collection should also include patients who have received private diagnosis or one from ‘out of area’.
~Provide guidance about equality issues
Clearer messaging and guidance about the Equality Act 2010 and associated rights and support, including provision of independent advocacy as referenced in the Social Services and Wellbeing Act Wales 2014, part 9278 and reasonable adjustments in the workplace.
Download the report #WomensHealthWales
