How the Government must prioritise endometriosis care for the 1.5 million

All too often, women and those assigned female at birth have their pain ignored, told it’s normal, or that it’s “all in their head”. The average diagnosis time in the UK currently stands at a shocking 8 years – a statistic that hasn’t improved in a decade. This injustice is robbing those with the disease the future they deserve. Not only without treatment can the disease progress, but it can have a huge impact on people’s careers, education, mental health and relationships.

Getting access to the right treatment and support, at the right time and in the right place with access to skilled and experienced healthcare practitioners gives the best chance for endometriosis to be managed effectively. We work with a number of healthcare practitioners who are at the forefront of delivering patient-centred care whilst also fighting to improve endometriosis services for all. Championing patient voices, listening and believing people’s pain, and ensuring everyone gets on the right pathway to care is the experience everyone should get to have.

Historic and systematic failure to acknowledge women’s pain has contributed to such lengthy diagnosis times, as well as a lack of funding into research, societal stigma, and a lack of awareness and education resulting in many not recognising that the symptoms they are experiencing aren’t normal, and could be a sign of a menstrual health condition like endometriosis. This is even more prevalent within certain cultures and faith groups, those from the LGBTQ+ community, and anyone who has a pre-existing disability or mental health condition, many of whom face additional barriers in accessing care. Nobody should face discrimination in accessing care, and more must be done to tackle these inequalities and ensure everyone with endometriosis is heard and has access to the right care at the right time.

Times are starting to change, with improved awareness amongst healthcare practitioners, governments and employers. But we must see an overhaul of the way the NHS prioritises endometriosis patients if we are to ensure those in most need get access to care. There needs to be sufficient planning, funding and workforce to ensure endometriosis patients have their needs met.

The Women’s Health Strategy for England has promised some exciting change for endometriosis patients. We have welcomed the commitment to reducing the time it takes to get a diagnosis, and plans to establish new health hubs to assist with diagnosis. But again, we are left with gaps in understanding how this will be implemented. With NHS resources already stretched, and gynaecological waiting times hit harder than any other specialism since the pandemic, funding allocated to endometriosis care has never been more vital.

We are pleased NICE have agreed to update parts of their guideline on Endometriosis Diagnosis and Management.  These areas include: diagnosis including the use of imaging, surgical management, and surgical management where fertility is a priority. The Guideline was issued and adopted across the UK in 2017, but sadly not always implemented. Updating guidelines and ensuring recommendations are implemented is key to ensuring all those with the disease have access to the right care. This would be a significant change in improving endometriosis diagnosis, treatment and care; helping to reduce wasted appointments with GPs and reoccurring hospital and A&E admissions, and saving the undiagnosed years of suffering and distress.

A key change that we would like to see is an end to the term ‘benign’ when talking about endometriosis and other gynaecological health conditions. In medicine, ‘benign gynaecology’ is widely used to describe non-cancer gynaecology, and gets applied to a range of conditions including endometriosis, fibroids, adenomyosis and PCOS. Using the term benign results in conditions like endometriosis being normalised and not seen as serious, the potential severity and impact undermined, and subsequently deprioritised within the NHS at times of pressure. Over the coming weeks, we’ll be launching further details about how to get involved in the campaign. Do keep an eye on our website for further details.

Biography

Faye Farthing is Head of Communications and Campaigns at Endometriosis UK, the UK’s largest charity supporting people affected by endometriosis. Faye is passionate about tackling inequalities in healthcare and working to ensure patients are at the forefront of political change.