It hasn’t been a great year for women’s health, with Covid eclipsing, disrupting and delaying routine healthcare services from cancer screenings to maternity care. But one ray of hope, published this week, was the report from the All Party Parliamentary Group (APPG) on endometriosis.
More than 10,000 endometriosis patients contributed to the inquiry. For many of them, this report and its recommendations are a symbol of hope that – after years of endometriosis being sidelined, dismissed, under-funded and under-researched – the government might finally listen and take action.
But comments made by Nadine Dorries, the Minister with responsibility for Women’s Health, at Tuesday’s launch event left a sour taste. In her closing remarks, responding to the question “What will the government do now to raise the profile of endometriosis, and when will it commit to reducing diagnosis times?”, Dorries appeared to dodge responsibility, saying: “Raising the profile is upon all of us – it’s not for the government, it’s not for the opposition, it’s not for the APPG, it’s for everybody.”
She went on to say: “that is partly our problem as women – we don’t talk enough… I think women actually have a responsibility when they go to the GP’s practice not to take no for an answer, not to be fobbed off by a doctor. They do not push back, they don’t challenge, they’re not confident enough to raise an issue, and so they’re very easily dismissed.”
To add insult to victim-blaming injury, Dorries then compared endometriosis patients to the victims of Dr Ian Paterson – the breast cancer surgeon who intentionally wounded and performed brutal surgery on his patients – saying: “We know that women who went back to [Paterson] did not challenge him on the treatment they were receiving, and I think women would be alive today if they did. We as women have this responsibility to speak out... By raising the profile, by making endometriosis a more widely known and a bigger issue, that will in itself educate GPs and embolden women to challenge their preliminary diagnoses.”
Stunned by her comments, I turned to Twitter: “I’m sorry, did @NadineDorries actually just say that women are partly to blame for the state of endometriosis care because they don’t speak up enough and allow themselves to be fobbed off by doctors?” wrote one woman. For the rest of the evening, responses from hurt and angry endometriosis patients came flooding in.
“That was hard to listen to,” one woman responded. “In January I had an A&E doctor accuse me of lying about my endo pain. He then interpreted my arguing with him (at approximately 1.45am) as my pain ‘not being that bad’. I waited over six hours to be seen. I could barely walk. I was sent home.”
Another posted: “We do stand up and say it’s not good enough. I had one GP call me the ‘patient from hell’ because I asked for support! He called me that while I was in the room.”
Endometriosis is a debilitating condition affecting one in 10 women, as well as some trans men and non-binary people, with an estimated 1.5 million sufferers in the UK. It’s as prevalent as diabetes, but there’s an awful lot that science still doesn’t understand about it.
The APPG report is hard-hitting about the problems that patients face: 58 per cent visited their GP more than 10 times before being diagnosed, and the average waiting time for a diagnosis has actually increased in the last decade, from 7.5 to 8 years. That’s just the average – one patient I heard from this week was kept waiting 23 years from the onset of symptoms before finally getting a diagnosis.
Recommendations in the report call on the government to commit to reducing the diagnosis time, invest in research, and ensure proper implementation of the 2018 National Institute for Health and Care Excellence (NICE) quality standards on endometriosis treatment and management.
But in September, a month before the report’s publication, Dorries confirmed during Parliamentary questions that the Government has “no [current] plans to reduce the diagnosis time for endometriosis”, and “there has been no assessment of improvement to the diagnosis and management of endometriosis since the publication of the 2018 [NICE] quality standards.”
Her implication this week, that patients should bear the responsibility for educating doctors and improving their own care, suggests little has changed.
The government has, she said, committed £2 million to one research project looking into the management of chronic pelvic pain in women with endometriosis. This is, don’t get me wrong, a great start. But it must be the beginning, not the end, of its commitment – and the responsibility should rest firmly with those who have the power to influence research, policy, and medical education. To suggest otherwise is, frankly, an insult to the desperate endometriosis patients who have already had to spend years advocating for themselves.
Endometriosis sufferer and campaigner Brittnee Leysen tweeted, in response to Dorries’ comments: “It is NOT your fault if your doctor does not listen. That is on them and their failure as a medical professional. It is not ‘inspiring’ to tell women they need to fight more. We have been fighting. We are tired.”
Speaking to me, she added: “I feel that overall the inquiry is a fantastic first step, but we cannot lose sight of the fact that there are systemic changes that need to be made. Blaming women for not being loud enough is the exact opposite of that much needed change.”
Emma Cox, CEO of Endometriosis UK, told me: “The government cannot ignore the overwhelming evidence in the report showing those with endometriosis are waiting far too long for a diagnosis, and face a postcode lottery when it comes to accessing specialist care.
“Everyone with endometriosis should have access to the right care at the right time, and for too long this hasn't happened. We need to see the government committing to reducing diagnosis time and ensuring the NICE guidelines are followed to provide a basic level of care for all.
“Action is needed so that those with endometriosis receive the healthcare they need, plus support in the workplace, during their education, and in accessing statutory sick pay and benefits for those unable to work. It’s time for the government to take responsibility, and make sure the NHS is there for the 1.5 million with endometriosis.”
“Without implementing the recommendations in the report, the next generation of those with endometriosis will be robbed of the future they deserve.”