Vicky Taylor is campaigning for better care as patients face eight-year diagnosis delays and lengthy treatment waits
Vicky Taylor recovering from the diagnostic laproscopy (Image: Vicky Taylor)
Campaigners are urging the NHS to increase its support for women’s health. Endometriosis, a condition affecting hundreds of thousands of women across the UK, is a particular concern for Vicky Taylor from Leeds.
She is now advocating for improved care for women suffering from this condition in Leeds and throughout Yorkshire.
Earlier this year, the British Society for Gynaecological Endoscopy (BSGE) granted Leeds Teaching Hospitals NHS Trust the provisional Accredited Endometriosis Centre status. This accolade recognises the Trust’s efforts in treating endometriosis, positioning Leeds as one of the leading hospitals in the UK for endometriosis treatment.
While Vicky commends the staff, she believes the Trust could do more to assist those living with the condition. She said: “Research suggests that the average time to get a diagnosis is eight years. I think that’s actually an underestimate, I think that actually it’s probably a lot longer than that.”
“My own personal journey is 20 years plus that I’ve been going in to medical professionals and even having to present in AandE with problems that weren’t taken seriously or investigated. Leeds recently became a provisional BSGE Centre which means they’re able to take very, very complex endometriosis cases, often where they need multiple surgeons, like a bowel surgeon, a bladder surgeon, or a thoracic surgeon to do the lungs, which is absolutely amazing and something Leeds Hospitals should be really proud of.
“But unfortunately, the Trust isn’t really giving the department the resources it needs to function properly with the influx of patients. They’re not just taking Leeds patients now they’re taking patients from all over Yorkshire, but nothing else has been put into that department so that’s just added to the wait times for people.
“It’s really, really hard to even get referred into the service in the first place. Average time is eight years according to research, but then, once you’re on that wait list, people are waiting over a year just to see the specialist consultant. Then the surgery wait time is then at a further year, some women are waiting more than that, so if you’ve already been waiting eight plus years just to see somebody and be taken seriously, then you have another further two years wait before you’re even offered any treatment.
“That’s a long time to be living with something that grows and spreads and get’s worse the longer it’s left.”
‘There’s no cure’
For women who suffer with endometriosis, the symptoms can vary, and diagnosis is slow. Vicky explained: “It operates in the same way that cancer does, but it’s benign, and it’s basically tissue that is very similar to what grows in the uterus lining, grows outside of the uterus in the body, reports Yorkshire Live.
“It infiltrates other organs such as the bowel, the bladder, the lungs, the ovaries. They don’t actually known what causes it due to a significant lack of funding into women’s health issues. There’s no cure.”
Symptoms include severe period pain, heavy periods, pain in the lower stomach and back, pain when you go to the toilet, and more. It can also cause problems with fertility and multiple tests are often needed.
For Vicky, it took two decades after she was told she had IBS had bad period pain for a full diagnosis of endometriosis. It can have severe consequences, with some women unable to work regularly due to the pain, and others having multiple miscarriages. As a result, Vicky describes the waiting list for treatment as a “national health crisis”.
Vicky Taylor recovering from the diagnostic laproscopy which confirmed she had stage four severe deep infiltrating endometriosis after a two decade search for answers(Image: Vicky Taylor)
Vicky has now pulled together a list of improvements she believes the Trust could make to the service here in Leeds, and has written a petition. The suggestions are:
Mr James Tibbott, Lead Clinician for Gynaecology at Leeds Teaching Hospitals NHS Trust, said: “Leeds is a specialist centre for endometriosis care with provisional accreditation from the British Society for Gynaecological Endoscopy (BSGE). This reflects the dedication and expertise of our staff and has contributed to a rise in referrals to the service.
“We understand how difficult and frustrating long waits for an appointment can be, and we are sorry for the impact this has on those living with pain or waiting for a diagnosis.
“We are committed to strengthening endometriosis care which has already included the introduction of complex robotic surgery and pioneering research, and many of the proposals in the petition reflect our ambitions for the service. We are actively exploring what can be achieved within current and future resources, and we will continue to work closely with commissioners and NHS partners to advocate for the investments that meet the needs of our patients.”
If you want to support Vicky’s petition, you can do by signing it here. Vicky is collating stories from people suffering with endometriosis anonymously to gather them for an open letter to the Chief Executive. If you wish to participate in this you can fill in a form here.