New Zealand Parliament speech by Jodee Watts – Patient Representative, 13 March 2019
My speeches are not always that easy to listen to, it is a natural reaction to feel at times uncomfortable or to feel like I just rained on your parade. As patient representative the number I represent is a large female population in New Zealand. And as shocking as it sounds because it is shocking, some of those are children just finishing primary school.
My experience, as a young girl and then later as a grown woman with Grade 4 Endometriosis, is that it is a particularly nasty torturous disease. Physically, emotionally, it is one of the most painful diseases you can endure. Every month Endometriosis has the potential to flare, leaving some girls in severe exhausting pain. Teenage life meant sickly days missing school. I believe some of us understand the concept of torture before we finished being a teenager.
The treatments I would describe as extremely gruelling and not what you would want any child of this genetic disease to become aware of. My adult life led to 4 major surgeries and heavy medications. My abdominal organs became stuck together and had to be split apart. I lost the ability to have children. I spent a large amount of my time either debilitated from sickly pain or in a cycle of surgery and hospital rehab, intensely battled out over the best part of a decade. And although I can speak of this, what is challenging as patient representative, is that my story simply does not represent near enough the different types of devastation that our young girls and women are living right now. There are several ways this disease can limit or be debilitating with the added possibility of severe complications from treatments.
Everything we do as an adult once we realise we have it, is about trying to minimise the impact of the devastation it can cause. But what’s most important about that statement, is that helping patients like us takes a medical team to minimise it. Typically, it’s not just one medical professional that you need helping you to live through it, especially when you are in an aggressive battle fighting this disease and keeping in mind there is no cure. A medical team made up of different types of specialists and practitioners, is what you end up seeking or have assigned to you, who if you’re very lucky, fully understand and are knowledgeable about the disease or are at least open to that. Unfortunately, that largely is not what is available out there to all girls and women throughout New Zealand.
For far too long, this disease has been under the shadow and inappropriately mistaken as nothing more than bad periods. That attitude has made my battle and that of other patients much harder to manage and more severe than what it had needed to be. That attitude has stopped a lot of work progressing that could have changed lives by now.
So, what I think we urgently need is the Ministry of Health to set out medical pathways for this area of women’s health. We need to ensure enough medical professionals are trained to work with the 1 in 10 patients there are nationwide, not the 1 in 30 figure as illustrated on the New Zealand Ministry of Health Website. And put the ME program into schools to educate teenagers and parents. If you put all of that together surely that will lead to making early diagnosis and therefore allowing treatments to begin early. Not to mention, most likely decreasing the amount of surgeries required as a result of late diagnosis. The knock-on effect would be life changing.
Witnessing as a patient the work of Endometriosis NZ and the Taskforce, I have felt some relief watching great minds who are truly skilled, navigate with collaborative ideas ways to manage everything about Endometriosis. Everything is well considered, for the first time I believe all patients of this disease can feel this is a real attempt to manage our needs that could result in the changes we have long needed.
My great great great uncle Sir James Carroll was the first Maori to be knighted as a member of the Liberal party and was acting prime minister in 1909 and 1911. He adopted several children with my aunty because they could not have children naturally. Knowing what we now know about the devastation of this disease 100 years later, I have little doubt that he too would have supported implementing medial pathways around endometriosis and pelvic pain. An average seven-year to ten-year delay in diagnosis as it currently stands today, is GROSSLY UNACCEPTABLE. It is #TimeForChange!
Jodee Watts Copyright 2019