Endo Bonds want to make it easier for everyone to find relevant and helpful information to further their understanding of endometriosis.
THE APPG REPORT
The All Party Parliamentary Group
The APPG on Endometriosis found that those with endometriosis are waiting an average of 8 years for a diagnosis.
Despite over 58% visiting their GP 10 or more times with symptoms, 53% visited A&E with symptoms, and 21% saw doctors in hospital 10 or more times with symptoms.
The average wait in Scotland is 8.5 years, 6 months longer than the national average.
The APPG recommends a target for diagnosis time be adopted across the UK, an average of
4 years or less by 2025 and under 1 year by 2030.
Praise for the APPG
Dr Edward Morris, President of the Royal College of Obstetricians and Gynaecologists (RCOG), said:
“This report is vital in understanding how women living with endometriosis in the UK continue to be let down when it comes to their diagnosis, treatment and the support they receive to manage their condition.
"While endometriosis costs the UK economy billions of pounds per year in treatment, loss of work and healthcare costs, the impact on women's wellbeing and mental health is much greater.
"The long diagnosis times and poor patient experience could be attributed to the significant gap in data regarding women and girls. What the RCOG would like to see is medical research in this area prioritised to ensure they get the advice and treatment that's right for them so they can lead happy and healthy lives."
The APPG recommends the following actions to support this reduction in waiting times:
• Implementation of the NICE Guideline on Endometriosis: Diagnosis and
Management (2017) and NICE Quality Standard on Endometriosis (2018) across the UK.
• It is vital for healthcare practitioners to recognise the symptoms of endometriosis, to be able to support diagnosis and ongoing treatment and care.
The APPG is calling on the Royal College of GPs,
Royal College of Obstetricians and Gynaecologists and Royal College of
Nursing, to review how to ensure their members gain the knowledge, training
and experience they need to recognise the symptoms of endometriosis.
Women and mental health
Mental health problems affect women and men equally, but some are more common among women. Treatments need to be sensitive to and reflect gender differences.
Persistent pain is a challenge: for the person with pain, their family or carers, their friends, their employer and certainly their GP and health care practitioners. The medical model of care is considered redundant as pain scientists have shown a biopsychosocial approach is more effective to manage pain. Persistent pain cannot be ‘fixed or cured’ and needs person-centred management to help people live better lives with it.
Clinicians, especially general practitioners, realise the need to change how they work with people with persistent pain. The reliance on medication only with its range of side effects and long term problems just adds to the challenges.
The way forward for clinicians is therefore to know more about persistent pain and ways to engage patients in shifting from a “fix it for me” mindset to “help me make the best of my life.”
To help you do this, Live Well with Pain offers a range of knowledge, skills, tools and resources to use in brief patient contact time.
They are designed to help clinicians enable patients to become clearer about their needs, manage or cope with their pain well and be more effective in their use of health care.
Live Well with Pain was developed by clinicians, for clinicians to help you support your patients towards better self-management of their long term pain.
A New Approach
Mathew Leonardi, MD is asking the question Endo Bonds and the Scottish Endo Community want answers to.
We know time is a factor in preserving internal organs and fertility when treating endometriosis, having a similar status to cancer for treatments would ensure thousands of women speedier and comprehensive care.
Mathew Leonardi, MD;
Alan Lam, MBMB(Hons);
Mauricio S. Abrao, MD;
Neil P. Johnson, MD;
George Condous, MD
"We are proposing a shift in mindset in the field of endometriosis, whereby care for patients with endometriosis mirrors that of patients with gynaecological cancer.
To achieve this, we advocate for the recognition of complex benign gynaecology as a subspecialty. Since the establishment of gynaecological oncology as a subspecialty, outcomes for patients with ovarian cancer have improved, with their care managed by multidisciplinary teams in specialized units.
Despite the marked difference in the primary treatment goal between these two conditions, they share common diagnostic and therapeutic challenges.
We believe that care management by a multidisciplinary team of dedicated and specialized health care professionals will lead to improved outcomes, including improved quality of life, for people living with endometriosis" Mathew Leonardi
The Women’s Health Plan underpins actions to improve women’s health inequalities by raising awareness around women’s health, improving access to health care and reducing inequalities in health outcomes for girls and women, both for sex-specific conditions and in women’s general health.