“Patients Are Going Round in Circles”

The Medical Technology Group spoke to Judy Birch, co-founder and CEO of the Pelvic Pain Support Network, about her decades-long experience navigating gynaecological care in the UK — and why she believes the NHS urgently needs to learn from countries like France.

The MTG’s new report, A System That Learns, found that gynaecology has some of the starkest gaps in data collection, pathway adherence and accountability across the NHS. More than 750,000 women are currently waiting for hospital gynaecology services, while most Integrated Care Boards (ICBs) hold no data on diagnosis, treatment or outcomes, and few have mechanisms to monitor adherence to NICE guidance.

We spoke to Judy Birch of the Pelvic Pain Support Network to illustrate what this systemic issue looks like for patients across the country.

Your own experience of pelvic pain illustrates some of the systemic issues with gynaecology highlighted in our recent report. Can you describe what seeking care in the UK was like?

After a few visits to a GP in the UK for severe pelvic pain, I went to live in the USA. On my second visit to a GP there, when I couldn’t stand up anymore I was referred to a gynaecologist. An ultrasound found a large mass on the left ovary, which turned out to be a 12 centimetre cyst. The ovary was completely destroyed, removed surgically and at this point endometriosis was diagnosed.

Back in the UK, years of hormone treatments, ultrasound scans and further laparoscopies followed a progressive worsening of the condition with deep disease repeatedly missed or inadequately treated. I eventually had to travel to Belgium for surgery because the waiting times here were so long — and even after that, my pain continued. It eventually took a neurosurgeon in France to find a severely trapped nerve in my pelvis. At that point I had been lying down virtually 24 hours a day for several years. I had to give up my job and was almost suicidal with pain.

What do you see as the fundamental failure of the system for women who present with pelvic pain?

There are no appropriate pathways. Patients end up going round in circles, seeing various people. And that’s if they get a referral at all. Gynaecology services seem to be the last thing considered, only after multiple visits. There are currently around 500,000 patients waiting for a laparoscopy. I speak to patients who have been waiting one to two years. They don’t hear anything from the hospital, they have nothing in the meantime to help with their pain. Patients are being told to choose between going on the waiting list for a laparoscopy or for pain advice and management — they can’t do both. I think this is ultimately an ethical issue. Leaving people in severe pain, with no clear outcome is not ethical.

Our report found that most ICBs hold no data on gynaecology outcomes and have no mechanisms to monitor whether NICE guidance is being followed. Does that match what you hear from patients?

Completely. Patient-reported experience measures for endometriosis have never been done at a national level. There have been some qualitative interviews and the same things keep coming up again and again. Almost half of all laparoscopies performed for chronic pelvic pain come back negative — and we don’t really know whether that’s down to a lack of expertise on the part of the surgeon, because many of these procedures are carried out by those with little training. I hear of people who have had several negative laparoscopies and then suddenly a positive result when they finally see someone with the right expertise. If there’s no data, we can’t know. And if we can’t know, nothing changes.

The imaging situation is another example. Within our support network we’ve been working with radiologists and sonographers, and there are big differences in how things are dealt with across the country. There are no guidelines on what information a sonographer can give to a patient. I was in Paris for an ultrasound recently — the sonographer spoke to me throughout the whole scan and had the report ready for me before I left. Here, the report goes to your GP, who may not fully understand what it says, or to whoever referred you. It becomes second or third hand. There’s a massive gap in communication.

The MTG report recommends that the Government commission comparative research on international women’s health pathways, specifically citing France’s direct referral model. You’ve experienced both systems — what’s the difference?

In France, patients don’t have to go via a GP for everything. They can find out who in their area is an expert in a particular field, contact the hospital themselves, and make an appointment. They are covered for that care through a mutual insurance system that all employees contribute to — and that covers things like physiotherapy too.

But ultimately there’s a cultural difference too. The pain I experienced was given much greater importance in France. Pelvic pain can be an incredibly complex field, and I think GPs need support in helping patients get timely support before they get lost in the system. I found out about an interventional radiologist who is based in my area and asked my GP to refer me. GP practices don’t always have the information about the services or expertise in their geographical area. These structural barriers can cost patients years of their lives through debilitating pain.

The Government has proposed Women’s Health Hubs as part of its wider women’s health strategy. Are you hopeful?

I want to be. But I’m quite sceptical. When I first moved to Dorset, there was something called a Well Woman Centre. When I mentioned endometriosis, I was told: “That’s very specialised, we don’t know anything about that.” This was years ago, but the risk is the same now. It’s going to need a great deal of training and a genuine cultural shift to make Women’s Health Hubs meaningful.

The idea of directing people to a setting where there might be a bit more knowledge and resources is a step, but only if the expertise is actually there. The ultrasound guidelines for endometriosis were only just launched at the British Medical Ultrasound Society conference. My concern is: what will be the expertise of the people doing those ultrasounds in community hubs? If they’re at a basic level, they may miss something and the patient won’t be referred on. It would be preferable to have sonographers trained to a higher level going from hospitals into community settings.

What is your single biggest ask of the NHS and the Government right now?

Proper pathways, with proper data. You cannot fix what you cannot see. Patient reported experience measures, outcome tracking, communication standards for imaging — none of this is in place consistently. Until it is, patients will keep going round in circles, and the system will keep failing them.

I think AI can be genuinely helpful — but it doesn’t replace a conversation with a human who has knowledge, expertise and empathy. Technology should support that, not substitute for it. The MTG’s recommendation for a French-style direct referral model is something I have been calling for for years. Patients need to be able to reach the right expert without fighting through layer after layer of a system that wasn’t designed with their condition in mind.

The MTG’s report A System That Learns calls on the Department of Health and Social Care to commission comparative research on international women’s health pathways, using models such as France’s direct referral approach to inform UK reform. It also recommends national oversight of NICE guidance implementation for endometriosis and other chronic pelvic pain conditions supported by regular ICB reporting.

Image Credit: Judy Birch headshot via healthawareness.co.uk

May, 2026