Are women in Wales and Scotland being left behind in endometriosis care?
- Ella Wilson
- Mar 23
- 3 min read
Ella Wilson
Women with endometriosis share their experiences, revealing significant disparities in the quality of care across Great Britain.
Care for those with endometriosis is difficult to access, and often comes after an average 8-year delay for a diagnosis. They then are faced with a postcode lottery in the quality of their care and support.
Endometriosis is a long-term female gynaecological condition, where tissue similar to the lining of the uterus grows elsewhere, affecting more than 190 million women and girls globally. This includes around 250,000 in Wales and Scotland. [Health Policy Partnership].
Care for endometriosis differs wherever you go. With health being devolved to both Wales and Scotland, the care disparities are evident.
Responsibility for health and social care services in Wales lies with the Senedd (Welsh Parliament) and the Welsh Government. Scotland's NHS remains a separate body from the other public health systems in the UK, meaning that decisions about health policy are made by the Scottish Government and Scottish Parliament.
Whilst there are currently 17 specialist endometriosis centres across England accredited by the British Society of Gynaecological Endoscopy (BSGE), there are only 2 in Wales, and 3 in Scotland.
Wales
The 2 centres in Wales are based at the University of Wales Hospital in Cardiff and the Singleton Hospital in Swansea. There is also a new provisional centre at the Royal Gwent hospital in Newport.
“It’s a nightmare here in Wales,” said Anna Cooper, from Wrexham.
“Unfortunately, in North and Mid Wales we have no endometriosis specialists. We’ve got one in the south. But you can’t be referred from North to South because they’re different health boards. You’re not allowed to go from health board to health board.”
The nearest endometriosis specialist centres for those in North Wales requiring specialist care are currently in England and while arrangements exist for cross-border referrals, they are sometimes hard to secure.
With approximately 150,000 women in Wales suffering with endometriosis, it is plain to see that the sole 2 NHS specialist centres are just not enough.
Additionally, individual health boards in Wales are keen to ensure that their patients do not go ‘out of the area’ for treatment. It is, therefore, incredibly difficult for patients across Wales to access reasonable care. [Fair Treatment for the Women of Wales].
Anna said: “Unlike in England where currently you have a right to choose, you can’t do that in Wales. You have to go to your local hospital. There’s no other choice.
“You have to wait to see a general gynaecologist who doesn’t specialise in endometriosis, and you could be waiting 18 months to 2 ½ years for that appointment.
"You then sit in front of that consultant for them to say that you need to see an endometriosis specialist across the border. You’re then waiting another 2 years for an appointment in Liverpool. So, then you’re up to 6 years and that’s so detrimental in somebody’s care, especially in a condition like endometriosis where it can be incredibly progressive.”
Scotland
In Scotland, only 3 endometriosis specialist centres exist. This can mean little to no access to specialist treatment even if a patient is suffering from deep endometriosis.
In 2021, the Scottish Government produced a Women's Health Plan, which among other matters, addressed endometriosis diagnosis and care. Endometriosis UK worked with the Scottish Government on implementation of the commitments on endometriosis.
Dionne McFarlane, from Edinburgh, said that the care in Scotland could be improved.
She added: “I had to chase up a lot of things. I had to phone the secretaries, I had to email and tell them how bad it is. I had to beg for support which was just awful.”
Dionne decided to invest in private healthcare in London, due to the quality of care she was receiving in Scotland.
She said: “When I looked into care down in London, I was surprised at how quickly somebody got me the appointment. I’ve been so surprised with the care, because it’s just like night and day with Scotland and London.”
Currently it takes on average a shocking 8.5 years to get a diagnosis in Scotland, according to the 2021 Women's Health Plan.
“When you get told you’ll get an appointment, but they can’t give you a time frame, it just feels like forever,” said Dionne.
“There was a time in 2021 where I was really struggling, and it was more like surviving than actually living. I had emailed my consultant, and spoke to the specialist nurse, and was told they’d get me an appointment but with the wait, when you’re struggling that feels like forever.”
With clear disparities in healthcare and a striking inequality in the number of specialist centres, the need for improvement in endometriosis care across Great Britain is undeniable.
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