Endometriosis New Zealand is speaking out on behalf of hundreds of New Zealand women and girls who’ve suffered from a lack of diagnosis and treatment during COVID-19.
“During the seven-week lockdown alone we received cries for help from 568 women desperate for help, some suicidal, struggling to deal with their endometriosis,” says Endometriosis New Zealand (ENZ) Chief Executive Deborah Bush. “Some were completely broken due to their long-awaited surgeries being cancelled with no rescheduling date in sight, while others were too scared to seek help for their painful symptoms at hospital Emergency Departments”.
ENZ says while surgery cancellations for endometriosis were unavoidable and understandable during lockdown and in Level 3, government inaction in failing to support two key endometriosis initiatives during this critical period has only made things worse. The first issue, it says, has been the government and Health Ministry’s failure to support the implementation of long-awaited Clinical Guidelines for the treatment of Endometriosis, launched at Parliament in March.
“There was satisfaction that we managed to get the Clinical Guidelines across the line after twelve years of pushing for a formal pathway for all New Zealand health professionals to follow when diagnosing and treating endometriosis,” says Bush. “But despite ministerial support at the March 2nd parliamentary launch, our calls for funding to now have the guidelines implemented and adopted by health professionals nationwide have been met with silence. This lack of ministry follow-through has delayed the prospect of more timely diagnosis and best practice treatment for the 130 thousand New Zealand women and girls living with this debilitating disease”.
“Endometriosis takes eight years on average to diagnose, with some patients as young as ten and eleven. Once picked up, it’s absolutely vital that treatment is appropriately tailored to the individual patient with doctors empowered to ‘Think Endo First’ when seeing a patient with debilitating period pain, lower back pain, IBS symptoms, abnormal menstrual bleeding, and pain with sex”.
“Failing to support the implementation of the new clinical guidelines to ensure health professionals understand and follow them, shows the government is once again sidelining the healthcare and needs of thousands of New Zealand women says endometriosis Gynaecologist Mr. Michael East. ”We are calling on the government to act now to rectify this. There are few medical conditions that significantly damage the health of around 10% of the female population at some stage in their lives so it makes no sense to ignore it”.
ENZ says the second disappointment came with a government decision to reject ENZ’s bid for funding from the Ministry for Women’s $1 million-dollar COVID-19 Community Fund. The ENZ bid requested a modest $50,000 sum to provide its EndoHelp online/phone/telehealth service to the hundreds of women and girls including the 568 who contacted the organisation for support, information, and advice on self-management and coping during levels 2 to 4 of lockdown.
“We missed out which was extremely disappointing,” says Bush. “While taking nothing away from the other worthy community projects selected for the COVID fund, we felt our bid warranted closer consideration”.
The Clinical Pathway encourages women and girls to seek early assessment and ENZ says discussions were underway with the Health Ministry and Associate Minister of Health for their support in implementing a nationwide online rollout of its multi-award-winning endometriosis school education program to support earlier detection. The ME (Menstrual Health and Education) programme was taught in 50 secondary schools alone last year thanks to philanthropic funding.
“Published data shows 27 percent of young Kiwi girls are missing school every month due to their symptoms, which interferes with their education, limits their future careers, risks their mental health, future fertility and their ability to maintain employment and contribute to society” says East. “It’s unfathomable to me that for a small investment, the government could not possibly support a small initiative like this which would most certainly change lives”.
“The health ministry claims it has put several initiatives in place to support the implementation of the Clinical Guidelines, including disseminating information through RNZCGP epulse communication, DHB Clinical Directors of Obstetrics and Gynaecology and through Health Pathways says Deborah Bush. “However we are struggling to find evidence of this. Finance Minister Grant Robertson is on record for his statement in May that ‘a strong publicly funded health system is critical to the well-being of New Zealanders’. It’s therefore disgraceful for the government and health ministry to then disregard the health and wellbeing of tens of thousands of women and girls with endometriosis and embarrassing to witness New Zealand falling well behind other countries in the treatment of this disease. We are calling for immediate action to fix this”.
Endometriosis is an inflammatory pelvic disease, affecting girls and women in their reproductive years where tissue similar to the lining of the uterus is found in places outside the uterus.
The battle to establish formal clinical guidelines relating to the disease in this country has been a personal crusade for New Zealand’s global endometriosis campaigner Deborah Bush, (MNZM) who co-founded Endometriosis New Zealand in 1985, sits on the World Endometriosis Society Board and also established the ME (Menstrual Health and Endometriosis Education) programme.