Endometriosis UK welcomes the NCEPOD (The National Confidential Enquiry into Patient Outcome and Death) report ‘A Long and Painful Road’ published today, with new research on the quality of care provided to adult patients diagnosed with endometriosis in England, Wales and Northern Ireland, and recommending improvements. The report is based on extensive review of clinical data by expert healthcare practitioners plus a survey of patients.
‘A Long and Painful Road’ calls for a step change in how endometriosis care is provided in the NHS, recognising it as a chronic condition and putting endometriosis care on a parity with other chronic conditions such as diabetes and bowel disease. Currently, endometriosis symptoms are generally treated as multiple acute (one-off) episodes, with symptoms often going unrecognised by healthcare practitioners as potentially being endometriosis. The need for care pathways, holistic and medical management supporting mental as well as physical health, and follow up if symptoms recure are all highlighted in the report – all of which Endometriosis UK has long been calling for.
Not only will implementing the recommendations reduce the burden of endometriosis on individuals, it could also save needed NHS resources. The report states:
“The delay in diagnosis is not only costly in terms of loss of education and work productivity for the patient but can also impact on fertility and lead to chronic pain; all of which results in a significantly higher use of healthcare.”
Endometriosis UKs own research shows that prior to diagnosis those with symptoms often have multiple GP, hospital and A&E appointments, and during the 8 yrs 10 months on average it takes to get a diagnosis, the disease may progress. Getting a prompt diagnosis and accessing the right treatment at the right time will reduce appointments taken, and reduce the need for additional treatment and support if the disease has progressed.
Even once a diagnosis is secured, it is often hard to access the treatments that would help. Should symptoms recur after treatment, it can be like having to get diagnosed all over again with multiple appointments – unnecessary if there is a chronic care pathway.
Recommendations in the report to the NHS and Governments, many of which are already in the NICE Guideline on Endometriosis (*NG73, 2017) but have yet to be implemented, include:
- treat endometriosis like the chronic condition it is
- raise awareness and improve training with all healthcare professionals
- patients to be asked about quality of life as well as physical health, and supported to access the care they need
- endometriosis Multidisciplinary Team and Clinical networks to be set up to facilitate appropriate care (only 16% of hospitals that are not specialist endometriosis centres provide this)
- provide pain management support
- formalise a care pathway for patients including follow up.
Emma Cox, CEO of Endometriosis UK, said:
“NCEPOD’s ‘A Long and Painful Road’ clearly evidences the issues faced today by those with endometriosis, and the recommendations show how improvements can – and must - be made. Implementing these will not only reduce suffering for those with endometriosis, it will also save the NHS time and resources.
‘A Long and Painful Road’ provides new research but highlights long standing issues; those with endometriosis have faced delays in accessing treatment and care for far too long. The report comes at a perfect time, we have a new Government who have committed to no longer neglect women’s health, and to prioritise women’s health as the NHS is reformed.
Endometriosis UK looks forward to working with Ministers and Government to implement the recommendations within the report, improve endometriosis care and make a difference to 1.5 million with the disease. “
Professor Andrew Horne, Endometriosis UK Trustee and Director of the University of Edinburgh’s Centre for Reproductive Health says:
“Endometriosis is frequently treated as a series of acute episodes rather than as a continuous, chronic condition. This fragmented care model overlooks the necessity for ongoing, comprehensive management, which is crucial.
The NCEPOD report recognises the gaps in our current approach and provides important actionable guidance to drive improvements in endometriosis care.”
Dr Katy Vincent, Associate Professor, university of Oxford and member of Endometriosis UK’s medical advisory panel:
“This report represents a huge and important piece of work and I am delighted to see it published. Endometriosis affects all areas of life and the information collected by this enquiry starkly illustrates the challenges that those with the condition experience throughout their lives.
I am particularly pleased to see that the report highlights the need for holistic, multi-disciplinary care and for a pathway that takes into account the chronic nature of the disease, as these are areas that I have long considered need improvement.
I hope that those who contributed their experiences to the report feel they were heard and that clinicians and policy makers can now take these findings on board to urgently improve care for this common condition.”
Read the full report here: Endometriosis_A Long and Painful Road_full report.pdf (ncepod.org.uk)
Reference:
*Endometriosis: diagnosis and management; NICE guideline [NG73] Published: 06 September 2017
