"They don't care if you live or die"

Battling The System

Kia ora - I spent a long time working out if I would publish this. But my husband read it and said ‘do it’ and so did other whānau so here we are.

CONTENT WARNING: Suicidal ideation, racism, health system inequalities, diabetes complications.

“I gave up. I can’t do it anymore….I feel like I don’t even deserve to have my child because what mum gives up on their child. But I can’t keep fighting I’m so exhausted I want to sleep and never wake up” - Shared anonymously with permission.

Photo by Kelly Sikkema

Seven months ago, our kind GP put The Referral though. We were exhausted. In the land of diabetes speak my son was still hypo-unaware at night, still on three different kinds of insulin. His diabetes team, always incredible, understood our struggle and supported us.

Caregiver burnout is the specific breed of black dog that haunts parents of children with disabilities and chronic illnesses. Now, it had come for my husband and we needed support.

It was a no-brainer really: The Referral. Carer support funding is ostensibly what it says on the tin. Funded by Whaikaha - Ministry of Disabled People, it is meant to provide support for carers. You begin with a ‘needs assessment’ of your tamariki.

Hence The Referral.

The first call about The Referral came over a month later. A delay unusual even for a DHB known for its delays. It was of course at 3pm, as I struggled to park and get to the school gate.

The woman on the phone began rattling on, asking personal questions without declaring who she actually was, confusing type one and type two diabetes. Making strange comments about how we already have a CGM when that wasn’t what we were asking for…

I had no idea what was going on. Needs assessments don’t happen over the phone - out of nowhere. What she seemed to be trying to do was have a discussion you’d have in a needs assessment meeting - which is what The Referral was for.

I still didn’t know who she actually was.

I asked if she could have someone call back who had a better understanding of diabetes, or if she could follow the usual protocol of contacting his diabetes team or the GP who made the referral.

A month later I still hadn’t heard from her and had no idea if The Referral had been accepted or declined.

We trudged through Christmas and got Covid 19 for the first time. Each layer of exhausted care built up on us. We needed support more than ever.

February felt harder still, I began to feel like I might be dying inside. I would feel pain and suddenly realise I was clenching my jaw, my hands in fists, my shoulders aching. My husband spun every plate as they threatened to fall one by one, the tiredness pulling at his face, blackening circles around each eye.

In our whare, I handle admin, order supplies, make sure we never run out, make appointments, manage the diary. He handles carb counting, changing needles, putting on continuous glucose monitors. We both handle injecting our little boy, but he takes the lion’s share. I spend hours on the phone - ‘yes, he still has diabetes so he still needs a teacher aide’, ‘yes he still has diabetes so….’, ‘yes, diabetes is a life-long illness’.

He still has diabetes. It’s an incurable condition. It’s incurable. Yes, it’s incurable.

I start to call the Care Coordination Service handling the referral most days. “Hi, it’s me again. I am still waiting for someone to get back to me’.

‘Hi, it’s just my daily call’.

Nobody ever responds to me.

I write a formal complaint four months after The Referral was sent in.

Good morning Emily

Thank you for your emails.  Your complaint has now been logged and submitted through to the Senior Manager here who deals with  the Care Coordination Service, and you will receive a response.  A response can take up to 20 working days, however it will of course be completed at the earliest possible time. 

I call again.

No response.

I set a reminder on my phone to call.

One day I call just before school pick up. I’m frustrated and exhausted. I snap ‘I really, really need this referral. Please!’.

The bored-sounding receptionist says ‘it was declined last year’.

I hang up and sob.

I cry so hard that my eyes feel raw and bloody. My head pounds and I want to slam it into the steering wheel. My heart is thudding in my ears and I try to steady my shaking hands. I put on a song and smile brightly to try to trick myself into stopping the tears that keep coming and coming.

Last year.

Last fucking year.

I have spent so many, many, many hours - days - on this and it was declined last year?

I shake the thoughts away. I smile. I turn the music up and smile. I trick myself. I walk to the school gate and the kids come running toward me, arms outstretched like they could fly.

I can hide my tears.

That night I fall to my knees and vomit on the floor. I don’t stop. I tell my husband I’m not going to emergency until the morning. Then I’m unconscious. Then I’m in hospital.

I have emergency surgery. I go into surgery not knowing how many organs I’ll lose. I’m grateful I just lose one. How did it happen? Apparently stress can be a trigger.

Twenty business days pass. There is no response to my complaint.

The Health and Disability advocacy team are kind and supportive and write another complaint.

Key issues for Ms [….]:

• [Eddie’s] NASC referral was declined unbeknown to Ms [….].

• She had to contact your service for an update on his referral, there she was advised the referral was declined

• There has been no formal letter declining [Eddie’s] referral.

• Since submitting her complaint she has received no response to her concerns. 

Response to concerns:

Ms [….] has requested you respond in writing to each of her issues outlined above.

She has advised she will consider their complaint resolved if she receives:

• A response to her previous letter of complaint.

• Clarification regarding if [Eddie’s] referral has been declined and why.

• An explanation as to why it has taken so long to receive a response to her complaint and why she has not been formally informed that the referral has been declined.

There is no response to my complaint.

There is no response to their complaint.

I have still not received any formal word that the referral has been declined. There has been no call, no letter, no email. Maybe it wasn’t declined? Under what criteria would it have been declined? He meets the criteria so why was it declined?

I see my GP. We put through another referral.

I contact the Needs Assessment Service Coordination (NASC) team directly in May. There has still not been a response to either complaint.

The NASC administrator has no health qualifications. She says on 15 May in response to my email: “The referral I received came in to Capital Support in 2022 and was declined by Capital Support as does not meet our eligibility.”

I ask to see the email or letter. I ask what criteria it doesn’t meet - because I know it meets the criteria. WHY WAS IT DECLINED? I am exhausted, incoherent. Furious. My email is all caps and all rage, I’m shaking and crying.

She replies:

“My email sent to you on the 15th May, Monday explains that this was declined.”

I go back to the email. “The referral I received came in to Capital Support in 2022 and was declined by Capital Support as does not meet our eligibility.”

I feel like I’m going insane. Where does it explain that it was declined? What’s going on? It does meet the eligibility. What is the eligibility if he doesn’t meet it? Am I really losing it this time?

I ask a friend to read the emails to see if I’ve lost my mind.

She reads silently for 20 minutes, there are dozens and dozens of emails. When she finishes, she hugs me with tears in her eyes. “I’m so sorry you have to do this. I can’t believe these emails, they’re being awful”.

I call my dad after a new email lands. I am sobbing, barely getting a word out. I send him the emails. He’s furious at how dismissive their emails are. He tears up as I wail at him through a screen.

It’s May. There has still not been a response to my complaint or the complaint by the Health and Disability Advocacy Team.

I email Paul Eagle - my local MP. I email the Human Rights Commission. I email Hon Priyanca Radhakrishnan as she’s the Minister for Disability Issues.

On behalf of Hon Priyanca Radhakrishnan, thank you for taking the time to get in touch. Please be assured your concerns have been noted.

The subject matter you raise falls within the portfolio responsibilities of the Minister for Health, Hon Dr Ayesha Verrall.

When I email Paul Eagle I tell him my son and his son whakapapa to the same iwi. I feel ashamed. But I need somebody to take notice.

I consider asking a friend who is a journalist to contact them but feel embarrassed by my inability to provide for my child. I feel crazy too. I start to dread opening my email. I’d rather deal with a thousand anti-vaxx ACT supporters than one more DHB administrator.

Another message lands in my DMs on Instagram.

Hi Emily, I have a friend who is fighting for funding for equipment for her daughter who can’t walk. She needs a […] but they won’t reply to her GP. What can I do?

Another arrives just ten minutes later.

I don’t know what to do anymore. Pharmac declined the request for [….] and I’m terrified. Can you help?

On May 15, I get a response from Paul Eagle’s office - “Just a quick update to let you know we received this and are currently working on who to contact to try to assist. I’ll come back to you as soon as possible.”

It’s June 1. Apparently the first day of winter. We shuffle in and out of Eddie’s room throughout the night - highs and lows.

At school he is thriving. He is leader of the kura’s kapa haka roopu now. But he’s exhausted by 4pm. Sluggish. No child should have to wake so often through the night.

Health NZ is now called Te Whatu Ora. The Ministry of Disabled People is Whaikaha. And every email is signed off ‘ngā mihi’.

Māori aged 45–64 years die at nine times the rate of non Māori New Zealanders of the same age due to diabetes. Māori are diagnosed younger and are more likely to develop diabetic complications such as eye disease, kidney failure, strokes and heart disease.

Just last year, the University of Waikato looked at type 2 diabetes, and found that many Māori and Pacific peoples with Type 2 diabetes are less likely than non-Māori or non-Pacific to be prescribed the appropriate medications. In some cases, they are prescribed no medication at all.

If our referral had been accepted, we had evidence of how often we wake during the night to check our son’s glucose levels. We would have used the funding for an alarmed CGM so we could get more sleep. This would have provided us respite - clearly fitting the criteria for carer support respite care.

Flexibility and person-led choice is key to Carer Support, so when making a claim or thinking of using your Carer Support funds you should first consider "is this purchase offering the full time Carer a break?" 

Yes, we would have told others and encouraged them to do the same. Yes, we would have shared this to help other families survive.

We knew we might not be approved. But we hoped we’d be able to have the conversation. To not even be worthy of a response…To be treated this way. It has been devastating.

Analyses revealed that up to 76% of caregivers reported poor sleep quality. Characteristics of the care recipient, such as health status, and the caregiver’s own health status and symptoms, such as depression, fatigue, and anxiety, were associated with sleep disturbance in caregivers. These factors may help clinicians identify caregivers at highest risk for developing sleep disturbance and guide the family toward additional support.

The long-term stress-related consequences of caregiving include increased risk for mortality and morbidities such as coronary heart disease or stroke.

But it’s more than that. It’s the stress of dealing with a system that feels designed to break you. It’s the anxiety of opening your email wondering what you’re going to find - will you have another administrator just casually dismissing you like you and your family are worth nothing at all?

Families have told me - and I feel exactly the same - that dealing with the health system is worse than having a child with high health needs. Sitting in front of someone and trying to justify why your child deserves $56.60 is soul destroying. Especially when the person approving or denying you is acting like you’re coming to steal from their wallet.

Suicidal ideation and deaths by suicide have since been reported in studies of caregivers from Australia, Malawi, the Netherlands, India, Japan, and the USA [here], [here], [here], [here], [here], and [here].

The Te Pae Tata Interim New Zealand Health Plan 2022 is in place now. It apparently ‘transforms’ the health system. Number one in the charter says this new system will “Place whānau at the heart of the system to improve equity and outcomes” and will “Implement mechanisms that ensure Te Whatu Ora and Te Aka Whai Ora value the voices of consumers and whānau in all service design and improvements, including Māori, Pacific, Tāngata whaikaha | Disabled people, ethnic and rainbow communities”.

Māuiuitanga taumaha (people living with chronic health conditions) are also specifically mentioned.

It has been 85 days since we made our complaint about Eddie’s referral.

It has been 195 days since we asked for help.

“There’s no point asking for help. I’ve asked so many times and nobody will help me. I tell parents of newly diagnosed kids - ‘you’re on your own, they don’t care if you live or die’” - anonymous parent, shared with permission.