Calls for urgent action on waiting lists, more specialist staff and an end to the postcode lottery impacting endometriosis patients across Wales.
Support from Sian Harries, Amelia Womack, Jenny Rathbone MS, and patient-led women’s health charity Fair Treatment for the Women of Wales.
A petition calling for Welsh Government to Improve Endometriosis Healthcare in Wales was handed in to Jenny Rathbone MS, Chair of the Women’s Health Cross Party Group, at the Senedd today (Wednesday 2nd February 2022). The charity Fair Treatment for the Women of Wales (FTWW) is warning that care for Welsh patients is in crisis and needs urgent intervention from Welsh Government.
Endometriosis is a common gynaecological condition, affecting at least one in ten women, girls, and those assigned female at birth. It occurs when cells like those in the womb are found elsewhere in the body. These cells (or ‘lesions’) cause localised irritation and bleeding, leading to inflammation and the formation of scar tissue called adhesions – which can pull organs out of place or stick them together, resulting in pain and organ dysfunction. Despite being as common as diabetes and asthma, in Wales, it takes an average of nine years to diagnose – the longest of the home nations – and many patients describe being dismissed or misdiagnosed due to the lack of understanding and treatment for the condition.
The petition was started by Beth Hales, a volunteer with FTWW and an endometriosis patient. She realised she had to act following a discussion with her husband. “We realised that for the rest of our careers, we would have to work in jobs where at least one of us had private healthcare included for our daughters,” said Beth. “If we don’t and they grow up to have endometriosis as I do, they will be in serious trouble when trying to access treatment unless things significantly improve. We wouldn’t have had to have that conversation if they were boys.”
FTWW has been campaigning for improved healthcare for many years; they wrote the report ‘Making the Case for Better Endometriosis Treatment in Wales’ in 2015. In response, Welsh Government formed the Endometriosis Task and Finish Group and – working with FTWW and healthcare professionals – published their recommendations in 2018, stating that ‘Current service provision is not meeting need, resulting in lack of access to appropriate care for women across Wales.’ Whilst some recommendations have been implemented – such as the recruitment of endometriosis nurses and pelvic health co-ordinators in each health board – others have not, particularly those which would see more gynaecologists specialising in the condition, and equitable access to centres of excellence. Patients and healthcare professionals alike are calling for urgent Welsh Government intervention to improve services.
“Had those recommendations been implemented, I would not have needed to create this petition,” said Beth. “Unfortunately, endometriosis care is now in crisis; Wales has lost a specialist from Wales’ only fully-accredited specialist centre (based in Cardiff) and there are no plans to replace him. Referrals from other health board areas are being rejected, against NICE guidance, and patients are being forced to take out loans to pay privately – patients who are lucky enough to have their referrals accepted to the two NHS specialists are now being told they face a wait for up to seven-and-a-half years for the surgery they need. The system was near breaking point before the pandemic but now it has been completely decimated.”
Chair of the Women’s Health Cross Party Group and Chair of the Equality and Social Justice Committee, Jenny Rathbone MS, has long campaigned for Endometriosis patients. In October 2020, the MS for Cardiff Central proposed a motion that the Senedd should recognise the devastating impact of the condition, acknowledge the diagnostic delay, make menstrual wellbeing education mandatory for all Welsh pupils, and ensure that more endometriosis specialists are trained and accessible to patients across Wales. Despite the motion being unanimously agreed, only the teaching of menstrual wellbeing education has moved forward, having been added to the new school curriculum. “I am pleased to receive Beth’s petition today at the Senedd,” said Jenny. “But it is disappointing that full recommendations from the 2018 report are taking so long to implement. Women are suffering tremendously and it is casting a huge shadow on their lives through no fault of their own. Welsh Government must act now to get their health needs addressed.”
The petition also has the support of Amelia Womack, Deputy Leader of the Green Party of England and Wales, and Welsh writer and actor, Sian Harries, who is also an endometriosis patient.
“The lack of appropriate care for endometriosis patients in Wales is nothing short of a scandal,” said Amelia. “Patients having referrals refused (in breach of NICE guidelines), seven-and-a-half year waiting lists, and patients being advised to go private should not be happening in the country that is blessed with the NHS. In 2018 the Welsh Government committed to becoming a feminist government – that cannot happen while so many women are being denied appropriate healthcare, losing their jobs and their quality of lives because of the impact of their symptoms, and falling victim to a postcode lottery.”
“We’re told one in ten women suffer from endometriosis – although personally I believe there are more of us, as I know so many women currently suffering with symptoms but who can’t get a diagnosis in a healthcare system full of shoddy advice and a lack of understanding, specialists and facilities,” said Sian. “This debilitating disease also has a knock-on effect on these women’s children, partners, families and employers. Wales is such a caring country, traditionally implementing progressive policies to protect society – free school meals for children, free prescriptions, the rules we put in place to protect our NHS throughout the pandemic. It therefore makes no sense to see Wales lagging behind England and Scotland when it comes to protecting women’s health and this petition highlights the support out there from those who desperately want this to change.”
Beth’s petition received nearly six thousand signatures, and she submitted four key questions to the Petition’s Committee regarding the following:
1. What element of the £140m pledged by the health minister for tackling NHS waiting lists will be allocated to endometriosis?
2. Accredited Endometriosis specialists have reduced from three to two for the whole of Wales – what are the timescales for increasing this number to six, as per the recommendations of the 2018 report?
3. What plans do Welsh Government have to ensure equal access to appropriate endometriosis healthcare regardless of patients’ locations?
4. With Cardiff currently the only fully accredited specialist centre in Wales, are there plans to develop similar facilities in other health boards, and will the funding system change to allow funding to follow the patient for out-of-area referrals?
The office for Eluned Morgan MS, Welsh Government’s Health Minister’s response states that “Welsh Government officials wrote to health boards in August 2018 seeking assurance that services were being delivered in line with the NICE guidance on endometriosis and all health boards confirmed compliance.”
“Sadly, this is not reflected in what patients across Wales are reporting,” said Beth. “We hear regularly of referrals to specialists being refused, and this is nothing new; it is described in the 2018 Task & Finish Group Report, and it continues today. This is why FTWW joined more than twenty organisations to launch the pan-Wales campaign, ‘Ending the Postcode Lottery’, calling for an overarching NHS executive to mandate service provision and processes to improve patient care. It should not be left to small charities like ours to pick up the pieces.”
There is some hope on the horizon; with Women’s Health Plans being developed by the Scottish and UK Governments, in Wales, a third sector coalition of over 40 organisations, charities and royal colleges are developing a Women and Girls’ Health Plan, which they hope to see implemented by Welsh Government in partnership with coalition members and patient advocates. Meanwhile, the Senedd’s Health and Social Care Committee has made ‘Women’s Health’ one of its top priorities for this Senedd term.