Endometriosis should be treated as a chronic condition by the NHS and taken as seriously as conditions such as diabetes and bowel disease, experts say.
A study into the quality of care for adult patients diagnosed with endometriosis found that the condition is often treated within health care as multiple isolated episodes of acute care, rather than being viewed as a continuum of symptoms, as conditions such as diabetes are recognised.
Endometriosis is a condition where tissue similar to the lining of the womb grows elsewhere, such as in the ovaries and fallopian tubes, and can affect fertility and other pelvic organs. Symptoms include painful periods, painful bowel movements, painful urination and pain during or after sex. It is thought to affect around one in ten women of childbearing age in the UK.
The report, published by the National Confidential Survey of Patient Outcome and Mortalityan independent health charity, also recommended improving training for healthcare professionals to recognise the symptoms of endometriosis, such as pelvic pain and heavy periods. Patients with endometriosis should also be asked how the condition affects them, beyond the physical symptoms.
Endometriosis care has long been substandard, with a previous report showing that women in the UK wait an average of almost nine years for a diagnosis.
Emma Cox, chief executive of Endometriosis UK, said the report “provides clear evidence of the challenges facing people with endometriosis today, and the recommendations show how improvements can – and should – be made,” and that “implementing these will not only reduce the suffering of people with endometriosis, but will also save the NHS time and resources.”
Cox added: “(The report) provides new research but highlights long-standing issues; people with endometriosis have faced delays in accessing treatment and care for far too long. The report comes at the perfect time, we have a new government that has committed to ending the neglect of women’s health and prioritising women’s health as the NHS is reformed.
“Endometriosis UK looks forward to working with Ministers and Government to implement the recommendations in the report, improve endometriosis care and make a difference to the 1.5 million people with the disease.”
Dr Geeta Kumar, vice-president for clinical quality at the Royal College of Gynaecologists, said: “Endometriosis is a chronic condition that can have a significant impact on the physical and mental health of people living with it, and delayed diagnosis is currently a major problem.
“This illuminating, in-depth look at how women and people with endometriosis are cared for by the NHS found room for improvement in around half of the patient cases studied. Clear recommendations are made for NHS organisations, royal colleges and individual teams to support through audit and quality improvement initiatives.”
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Kumar added: “The overarching message is to implement holistic, integrated multidisciplinary care with appropriate referral pathways accessible to both primary and secondary care, including discharge planning and follow-up. Women reported better care experiences when referred to specialist centres and the key role of specialist endometriosis nurses also shines through.”
NHS England has been contacted for comment.