1 in 10 (1.5 million) people suffer from endometriosis in the UK. In Nottingham this accounts for around 30,000 people. It currently takes an average of eight years to be diagnosed.
What’s the story in Nottingham?
Nottingham Women’s Centre’s staff, network and service users are suffering due to the lack of a specialist NHS endometriosis clinic in Nottingham.
People are being forced to travel to Leicester, Peterborough, Birmingham, and other parts of the country for treatment. This is particularly difficult for those with caring responsibilities and those who don’t have cars.
The lack of appropriate and timely treatment for endometriosis can have a serious impact on people’s mental health and has been linked to painkiller addiction. 90% of the people we polled who live with endometriosis said they would have liked psychological support, but they had not been offered this as part of their treatment.
We ran a poll through our social media platforms and found that 45% of respondents with endometriosis said they had to travel to other parts of the country for treatment. It was unanimously agreed that it was “extremely important” that Nottingham gets a specialist endometriosis treatment centre.
Because I have severe endometriosis, I have to be treated by a specialist endometriosis centre, however Nottingham does not have such a centre so I need to travel to Leicester for my care. This is also where my surgery will take place meaning it is unlikely that any friends or family will be able to visit me while I’m in hospital.”
What has NWC done?
- We’ve engaged with: NHS Trust Nottingham, Nottinghamshire Integrated Care Board, Endometriosis UK, specialist doctors and nurses, Nottingham Keep Our NHS Public, people with lived experiences, and research groups at the University of Nottingham and University of Leicester.
- We submitted a proposal for change on endometriosis to feed into the Nottinghamshire ICS Strategy.
- In March 2023, we led an endometriosis awareness campaign on our social media channels with useful tips about endometriosis as well as promoting an online event with healthcare professionals.
- We hosted this ‘All About Endometriosis’ online workshop in May 2023 with Dr Deb Shilpa (Consultant Gynaecologist) and Sanya Kurmani from NHS Nottingham. They answered questions on: symptom, diagnosis, treatment option and where and how to access support for anyone with suspected and/or confirmed endometriosis within the Nottingham. This workshop was really impactful with many local people in attendance.
- Submitted evidence to the Women Equality Committee inquiry into reproductive and gynaecological health
‘It’s nice to know you’re not alone.’‘All About Endometriosis’ workshop participant
What support is there?
Nottingham has it’s own endometriosis support group – an informal space to share stories and experiences without judgments and learn more from other people in your situation. Endometriosis UK also have lots of support and information.
We’re several steps away from achieving our goal of there being a specialist endometriosis clinic in Nottingham and have met some challenges, we want to see people experiencing this condition have access to the services they need. If you know how to make that happen, get in touch.