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England: Unacceptable care delays for endometriosis

New data from Endometriosis UK shows that those with endometriosis in England are still facing unacceptable delays for treatment

11 August 2022

Endometriosis UK says “More action is still needed to ensure those with endometriosis who are stuck on NHS waiting lists receive the care they need.”

While NHS England is reporting a fall in patients waiting more than two years for care[1], Endometriosis UK has found that 22% of those with endometriosis who had gynaecology appointments cancelled or postponed during the pandemic are still waiting, and many have been forced to seek private care. This follows gynaecology waiting lists seeing the biggest percentage increase of all NHS services during the pandemic, and waiting times soaring by 60% across the UK[2].

A recent survey of 1,100 of those with endometriosis in England[3] found that, of those who reported having NHS gynaecology care cancelled or postponed:

  • Up to 22% are still waiting for new appointments.
  • Of those waiting for surgery, up to 37% are still waiting for a new surgery date[4].
  • 17% sought private care for endometriosis due to long NHS waiting times. 68% of those who had private care had never done so before the pandemic[5].

Emma Cox, CEO of Endometriosis UK said:

“Whilst overall progress has been reported on reducing NHS England waiting lists, there is still a long way to go to ensure those with endometriosis receive the timely treatment and care they need. We’re particularly concerned that the needs of those requiring complex surgery may be being neglected. 

Endometriosis UK regularly hears from those with endometriosis who are struggling with debilitating symptoms and can't get the care and treatment they need, including surgery, due to long waiting times. Others are struggling to get a diagnosis, without which they can't access the care they need. The impact endometriosis can have on someone’s physical and mental health can be huge, with no idea how long they'll be suffering chronic pain and sometimes debilitating symptoms while they wait.

It cannot be a case of wait or pay for those with endometriosis stuck on long NHS England waiting lists. We’re calling for endometriosis to be given due priority, so that those living with the disease and waiting for care are not left behind. There must be an overhaul of the way the NHS England prioritises patients so those in most need get access to care, including consideration of the disease on wider impacts such as quality of life and stopping people working, and fertility. This requires strategic capacity planning of endometriosis care, without which those with endometriosis in England will continue to face unacceptable waiting times”.

While the data cited here is for England, the same problems face those with endometriosis across the UK[6] and much more needs to be done.


Notes for editors

[1]NHS marks milestone in recovery plan as longest waits virtually eliminated”, NHS England, 9 August 2022

[2]Left Too Long – understanding the scale and impact of gynaecology waiting lists”, Royal College of Obstetricians and Gynaecologists (RCOG) report on waiting times, 6 April 2022

[3] The survey is a UK wide survey undertaken by Endometriosis UK asking those with confirmed or suspected endometriosis about their experience of accessing NHS care since the Covid pandemic began in March 2020. The data cited here is based on analysis of the responses of 1104 people living in England, 964 of whom had confirmed endometriosis, who filled in the survey between 6 June and 9 August 2022.

[4] Of those with confirmed endometriosis who reported having had surgery including laparoscopy cancelled since March 2020 (n = 256), 21% (n = 55) waited 6 months or less for a new date, 43% (n =109) waited 1-2 years, and 36% (n = 92) are still waiting. Of those who had surgery postponed (n = 212) since March 2020, 22% (n = 46) waited 6 months or less for a new date, 41% (n= 87) waited 1- 2 years, and 37% (n = 79) are still waiting.

[5] Of the respondents with confirmed endometriosis in England who said they’d sought private care for their endometriosis since the pandemic began (n = 172), 121 (70%) had a gynaecologist appointment either in a gynaecology department or an endometriosis specialist centre, and 60 (35%) had surgery including laparoscopy for their endometriosis.

[6] Initial analysis of the UK wide data from the survey, which includes respondents from Wales, Scotland and Northern Ireland as well as England, shows a similar picture in relation to waiting times for cancelled and postponed NHS appointments, and recourse to private care.

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