Thank you all so much for your comments I just had a really big cry with my husband and he sends his thanks to you all for your kind words too x I’m going to go offline for an hour or too but will reply to you all and I’m so grateful for your kindness x
Emily. I'm so heartbroken to read all of this. I'm so glad you published it. People need to understand the reality for your whānau and others like it. This should be sent to every administrator, every minister, so they know there are entire lives on the end of these Referrals.
Ka aroha hoki ki a koe me tō whānau. There is so much of this that resonates with my experiences as the mother of a child with high special needs and I wish wish wish this hadn’t happened to you. It has been almost seven years since my daughter died but the memories of daily battles of fighting for recognition of our needs within a faceless health and social welfare system are vivid when I read your words. When her needs repeatedly put us in the Children’s Ward (staffed by Angels), I was so aware of my own privilege at having a reasonable set of literacy and advocacy skills to navigate the systems we were thrust into. But I met many families who had been kneecapped by the institutions they were up against - probably for generations. It broke my heart every time.
I “got out” because my daughter died and (only other parents would acknowledge this) there are times when I honestly feel grateful that we didn’t have to fight anymore.
I’m subscribing today because I see your mahi. I see your words and I know this fight. If all i can do now is send a bit of coin to stand alongside you and support your voice and the change it might bring - I will.
I’m so so sorry Louise. Thank you for sharing some of your story with us all - I am so sorry your daughter died and so sorry you had to battle for so long and that battle is fresh in your mind. I think all the time that I have so much privilege yet it’s so hard. A huge part of doing this is to try to pave the way so other parents don’t have to fight so hard. But it’s exhausting. I think about the angels on the ward a lot - If we just worked with them we would be so much better off. Thank you again for sharing, for your kind words, and for subscribing ❤️
Fucking hell Emily. I'm absolutely furious on your behalf; this is beyond the goddamn pale. I'm so sorry you've had to deal with this - you shouldn't have. No one should.
Emily, firstly you need to crowd fund for an alarmed cgm. I would donate straight away and I bet others would too. It will not solve the systemic issues but it will help your whanau.
Secondly, I’m feeling the same way about the health system as I am about the climate. This is it. It’s never going to get better, only worse. I hope I’m wrong. Sadly I work as a doctor which is why I’m so pessimistic. Please do the crowd funding. You do so much for others and so does Eddie. If Eddie heard his own story he would immediately start a fundraiser. Let us help you.
This is so kind Amy - we have discussed this as a whanau and it’s not the right step for us. But we think it’s such a kind offer. We are lucky to have a lot of family support and are not in the same place many other families are who don’t have two parents with jobs. But we do appreciate the support - what we really want to do is be there for the parents who are falling through the cracks. And help those who are in a worse position than us. We also had a lot of help from subscribers when I was in hospital - everyone stuck with us - so we don’t want to take money again from good people when almost everyone is struggling in these cost of living times x arohanui and thank you x
I understand your position completely Emily but if you do reconsider I would love to donate. I'll also donate an equal amount to Diabetes NZ or any other charity you prefer. I think many of us would like to help your whānau in a tangible way. I'm so sorry you and others have to navigate this awful system
Fucking outrageous, it’s so so unbelievable that I’m not surprised you feel like you’re going crazy, sending you around and around in circles. I’m so sorry. Thank you for being brave and hitting puckish. You did a good thing. People need to understand what isn’t working. Nui Te Aroha.
Dear Emily - I rushing out to a meeting - trying to get carers for my son's flat - it ...is ...never...ending.
Enraged to read what you have experienced. I've sent it off to my MP and asked her to send it to ALL parliamentarians. walk a mile in our shoes. It reminds me of Trevor Mallard to related the story of a woman with a child on the autism spectrum who was beside herself. She arrived ay his electoral office, said - "I'm over it You sort it - back in an hour or two." The child climbed up Mallard's leg and he had to cope. Brave mother - we'd never do that - too scared, too conditioned, too scared our child will be whipped off us. I urge everyone to send this post to their local MP - ask them to read it and make an appointment to talk these issues out. I've already got an appointment with mine on Monday - this is going on the agenda. You are so brave Emily. Thank you. Late for meeting - don't care - this is too important. I call myself a 'survivor' not because of Trav, but because of the bloody, indifferent system. Lots of love and aroha Colleen
I'm on the executive of Child Poverty Action Group. I sent it to our wonderful coms guru Julie - she has posted it on our FB page and copied in all relevant MPs across the political parties. Again I would urge everyone who has read the post, to forward it to mates, forward to your local MPs. Emily, at great personal cost has disclosed what she has experienced - we owe it to all the other 'Emily's' out there to speak up.
Thank you for the time and energy it took to share this ❤️ it’s absolutely horrific what your whānau (and unfortunately many others) have had to deal with. I hate that we all have our own stories of battling these systems and being so dehumanised. I so relate to your points about questioning your own sanity.
Fucking hell this is so incredibly fucked. My god. Emily 💔Thank you for sharing.
I know this isn’t how it should work, but can we collectively help you? We could donate something ? I’m so so very sorry you’ve been going thru this 🫂
PS I’m disabled from an accident and now have PTSD from the way acc treated me, so I can empathise with some of what you’re going thru. It’s absolutely de-humanising, sending my heartfelt love from Tamaki Makaurau.
I’m so sorry you were treated so badly by ACC - I gave heard many horror stories over the years. Thank you for your kind words. My hope is through writing this and people sharing I will get some help from the people who were meant to help. But I appreciate your very kind offer. This community is always financially helping each other and it’s so appreciated but so many are struggling in this cost of living crisis climate we are in ❤️ I won’t add to that burden x
Thank you 🙏🏻 I really hope you do, and let us know if there’s anything else we can do. I will forward to my MP Chloe Swarbruck. Auckland but she seems to really care about this stuff. The disability and chronically ill community have kept me going, when I’m well enough I hope to do more in this space in return. Thanks for all you do and I hope your week is calmer and the support you need arrive with bells and bows ❤️🩹❤️🩹❤️🩹 🙏🏻🌞 aroha nui x
Oh all the aroha Emily! I know you're not one for hugs, so please take all the aroha I can send through a computer screen.
It's heart breaking. I work in private allied health, and as frustrating as it was for the parent, I referred them straight back to the health system that is currently failing their whanau and urged them to make sure that the person they were communicating with was aware of ALL of their concerns, to make sure that they were accessing the care that they need, and as soon as possible (which in this case is hard, as we know that this part of the system is severely under staffed and has multitudes of referrals that they will never be able to see), I felt awful sending them back.
Locally we had the NASC team visit my work and talk about what they do, what the process is. The first step is someone calling the whanau to confirm they've received the referral, that the referral received meets criteria, and to the whanau know that a needs assessor will be in touch to go through the full conversation of what supports may be beneficial to the whanau. It sounds like your referral has fallen at this first step, even though your GP will be well aware of what would meet criteria, this is thoroughly frustrating, and more so because they haven't provided you with any answers.
I don't know what else to say, but if this has happened to you, how many other people have been impacted by this? Who else is not accessing the support they need and are entitled to? Gosh that makes my blood boil!
Thank you x that’s helpful context I appreciate it. When my little boy was diagnosed we didn’t even have to apply for a NASC it just kind of happened...and quickly. And the NASC was at home - and thorough. So I have no idea what has gone so wrong in the last few years. Anyway, I am with you - I do this to stand up not just for my kids but for all families who are falling through the cracks. X
Thank you for doing this, it takes so much strength to do. I know it's hard when the systems failing you and your tamariki, and this is literally what you are trying to get help with, but as I tell parents/caregivers that get in touch, take some time to look after yourself, and your husband too. Whether that's tag teaming extra sleep time for each other, or just taking 5 minutes to just stop, breathe, and drink that hot drink, enjoy that view, find that delicious smell, whatever you need to get that little bit of peace, of recharge, of space.
Argh this has undone me because I honestly thought I was going crazy and being ridiculous. We fight this every single day for our regular 'stuff'... Then you add more layers of complexity like a giant hole in your child's jaw that according to the specialist surgeon is critical and could cause a break at any time - and they can't get the critically necessary braces they need because there's a hole in their jaw.... You pay for specialist maxillofacial surgeon to say these things - he quotes $5000 to fix it. You gulp and ask the kids dad if he can apply for a loan because banks don't look kindly on teachers... He applies dutifully and the banks laugh at his 5k request (despite him earning 6 figures!!). Oh and you've used ill gotten Carer Support 'hours' to pay the 400 for the surgeon and 600 for the CT scan, which you will lie awake at night over. You refer back to the public system. The paediatrician adds his recommendation. You wait and wait and wait. The hole is there, in her 15 yr old jaw. In her 15 yr old autistic ADHD ARFID jaw. She can't get the braces that will help her to finally chew food properly until it's fixed. And even then - a loan for 11k?? The banks will laugh until they piss themselves in their tailored suits. Because it wasn't already hard enough, every day, every meal, every IEP, every useless referral to health systems that are fundamentally broken to their core. So yeah - how do we do this? How do we actually get out of bed every day and keep going? This is not how I imagined my life.
I don’t even know what to say that’s so bloody horrible. I’ve heard so many horror stories in the last few hours and it’s just devastating. God I’m so sorry x
I am disgusted and horrified at their complete lack of response and dignity. I know it's not easy to do so but this is absolutely worthy of an HDC complaint. I'm a medical administrator and as much as I know I can't take on everyone's problems as my own, I cannot imagine treating a patient and their family in such a dismissive fashion. Just resolving the issue and responding appropriately in the first place would take so much less time for all involved and cause so much less anguish.
Truly if they’d just responded back then and told me they’d declined it I would have wanted to know why but it would have saved me months of angst. I think the issue is it shouldn’t have been declined and they don’t know what to do now.
Hey ❤️ the health and disability commission have been awesome. But the dhb hasn’t responded to their complaint either! They’ve worked hard but can’t do much if the dhb ignores them too I suppose?
Thank you all so much for your comments I just had a really big cry with my husband and he sends his thanks to you all for your kind words too x I’m going to go offline for an hour or too but will reply to you all and I’m so grateful for your kindness x
Emily. I'm so heartbroken to read all of this. I'm so glad you published it. People need to understand the reality for your whānau and others like it. This should be sent to every administrator, every minister, so they know there are entire lives on the end of these Referrals.
Arohanui x thank you ❤️
Ka aroha hoki ki a koe me tō whānau. There is so much of this that resonates with my experiences as the mother of a child with high special needs and I wish wish wish this hadn’t happened to you. It has been almost seven years since my daughter died but the memories of daily battles of fighting for recognition of our needs within a faceless health and social welfare system are vivid when I read your words. When her needs repeatedly put us in the Children’s Ward (staffed by Angels), I was so aware of my own privilege at having a reasonable set of literacy and advocacy skills to navigate the systems we were thrust into. But I met many families who had been kneecapped by the institutions they were up against - probably for generations. It broke my heart every time.
I “got out” because my daughter died and (only other parents would acknowledge this) there are times when I honestly feel grateful that we didn’t have to fight anymore.
I’m subscribing today because I see your mahi. I see your words and I know this fight. If all i can do now is send a bit of coin to stand alongside you and support your voice and the change it might bring - I will.
I’m so so sorry Louise. Thank you for sharing some of your story with us all - I am so sorry your daughter died and so sorry you had to battle for so long and that battle is fresh in your mind. I think all the time that I have so much privilege yet it’s so hard. A huge part of doing this is to try to pave the way so other parents don’t have to fight so hard. But it’s exhausting. I think about the angels on the ward a lot - If we just worked with them we would be so much better off. Thank you again for sharing, for your kind words, and for subscribing ❤️
Fucking hell Emily. I'm absolutely furious on your behalf; this is beyond the goddamn pale. I'm so sorry you've had to deal with this - you shouldn't have. No one should.
Thank you Josh ❤️ it’s been so hard that it feels like a weight off my shoulders now that it’s out there.
Emily, firstly you need to crowd fund for an alarmed cgm. I would donate straight away and I bet others would too. It will not solve the systemic issues but it will help your whanau.
Secondly, I’m feeling the same way about the health system as I am about the climate. This is it. It’s never going to get better, only worse. I hope I’m wrong. Sadly I work as a doctor which is why I’m so pessimistic. Please do the crowd funding. You do so much for others and so does Eddie. If Eddie heard his own story he would immediately start a fundraiser. Let us help you.
This is so kind Amy - we have discussed this as a whanau and it’s not the right step for us. But we think it’s such a kind offer. We are lucky to have a lot of family support and are not in the same place many other families are who don’t have two parents with jobs. But we do appreciate the support - what we really want to do is be there for the parents who are falling through the cracks. And help those who are in a worse position than us. We also had a lot of help from subscribers when I was in hospital - everyone stuck with us - so we don’t want to take money again from good people when almost everyone is struggling in these cost of living times x arohanui and thank you x
Please reconsider your decision. *It’s ok to accept help!* I will contribute as well.
I understand your position completely Emily but if you do reconsider I would love to donate. I'll also donate an equal amount to Diabetes NZ or any other charity you prefer. I think many of us would like to help your whānau in a tangible way. I'm so sorry you and others have to navigate this awful system
Brilliant suggestion. I’d donate too ❤️
Ditto.
Same here
Fucking outrageous, it’s so so unbelievable that I’m not surprised you feel like you’re going crazy, sending you around and around in circles. I’m so sorry. Thank you for being brave and hitting puckish. You did a good thing. People need to understand what isn’t working. Nui Te Aroha.
Ngā mihi kare x I so appreciate your kindness
Dear Emily - I rushing out to a meeting - trying to get carers for my son's flat - it ...is ...never...ending.
Enraged to read what you have experienced. I've sent it off to my MP and asked her to send it to ALL parliamentarians. walk a mile in our shoes. It reminds me of Trevor Mallard to related the story of a woman with a child on the autism spectrum who was beside herself. She arrived ay his electoral office, said - "I'm over it You sort it - back in an hour or two." The child climbed up Mallard's leg and he had to cope. Brave mother - we'd never do that - too scared, too conditioned, too scared our child will be whipped off us. I urge everyone to send this post to their local MP - ask them to read it and make an appointment to talk these issues out. I've already got an appointment with mine on Monday - this is going on the agenda. You are so brave Emily. Thank you. Late for meeting - don't care - this is too important. I call myself a 'survivor' not because of Trav, but because of the bloody, indifferent system. Lots of love and aroha Colleen
Thank you so much for sending it to your MP. Maybe I’ll finally find out what happened to The Referral now?
I'm on the executive of Child Poverty Action Group. I sent it to our wonderful coms guru Julie - she has posted it on our FB page and copied in all relevant MPs across the political parties. Again I would urge everyone who has read the post, to forward it to mates, forward to your local MPs. Emily, at great personal cost has disclosed what she has experienced - we owe it to all the other 'Emily's' out there to speak up.
I’m going to too. My MP is Grant Robertson!
Thank you for the time and energy it took to share this ❤️ it’s absolutely horrific what your whānau (and unfortunately many others) have had to deal with. I hate that we all have our own stories of battling these systems and being so dehumanised. I so relate to your points about questioning your own sanity.
Arohanui Natalie x thank you for your kind words
Fucking hell this is so incredibly fucked. My god. Emily 💔Thank you for sharing.
I know this isn’t how it should work, but can we collectively help you? We could donate something ? I’m so so very sorry you’ve been going thru this 🫂
PS I’m disabled from an accident and now have PTSD from the way acc treated me, so I can empathise with some of what you’re going thru. It’s absolutely de-humanising, sending my heartfelt love from Tamaki Makaurau.
I’m so sorry you were treated so badly by ACC - I gave heard many horror stories over the years. Thank you for your kind words. My hope is through writing this and people sharing I will get some help from the people who were meant to help. But I appreciate your very kind offer. This community is always financially helping each other and it’s so appreciated but so many are struggling in this cost of living crisis climate we are in ❤️ I won’t add to that burden x
Thank you 🙏🏻 I really hope you do, and let us know if there’s anything else we can do. I will forward to my MP Chloe Swarbruck. Auckland but she seems to really care about this stuff. The disability and chronically ill community have kept me going, when I’m well enough I hope to do more in this space in return. Thanks for all you do and I hope your week is calmer and the support you need arrive with bells and bows ❤️🩹❤️🩹❤️🩹 🙏🏻🌞 aroha nui x
Actually Chloe is the Greens mental health spokesperson, so maybe she can help! 🤞🏽
Dismayed and enraged by so much of this, Emily. So very sorry this has been happening to you
Thank you David x
Oh all the aroha Emily! I know you're not one for hugs, so please take all the aroha I can send through a computer screen.
It's heart breaking. I work in private allied health, and as frustrating as it was for the parent, I referred them straight back to the health system that is currently failing their whanau and urged them to make sure that the person they were communicating with was aware of ALL of their concerns, to make sure that they were accessing the care that they need, and as soon as possible (which in this case is hard, as we know that this part of the system is severely under staffed and has multitudes of referrals that they will never be able to see), I felt awful sending them back.
Locally we had the NASC team visit my work and talk about what they do, what the process is. The first step is someone calling the whanau to confirm they've received the referral, that the referral received meets criteria, and to the whanau know that a needs assessor will be in touch to go through the full conversation of what supports may be beneficial to the whanau. It sounds like your referral has fallen at this first step, even though your GP will be well aware of what would meet criteria, this is thoroughly frustrating, and more so because they haven't provided you with any answers.
I don't know what else to say, but if this has happened to you, how many other people have been impacted by this? Who else is not accessing the support they need and are entitled to? Gosh that makes my blood boil!
Thank you x that’s helpful context I appreciate it. When my little boy was diagnosed we didn’t even have to apply for a NASC it just kind of happened...and quickly. And the NASC was at home - and thorough. So I have no idea what has gone so wrong in the last few years. Anyway, I am with you - I do this to stand up not just for my kids but for all families who are falling through the cracks. X
Thank you for doing this, it takes so much strength to do. I know it's hard when the systems failing you and your tamariki, and this is literally what you are trying to get help with, but as I tell parents/caregivers that get in touch, take some time to look after yourself, and your husband too. Whether that's tag teaming extra sleep time for each other, or just taking 5 minutes to just stop, breathe, and drink that hot drink, enjoy that view, find that delicious smell, whatever you need to get that little bit of peace, of recharge, of space.
Argh this has undone me because I honestly thought I was going crazy and being ridiculous. We fight this every single day for our regular 'stuff'... Then you add more layers of complexity like a giant hole in your child's jaw that according to the specialist surgeon is critical and could cause a break at any time - and they can't get the critically necessary braces they need because there's a hole in their jaw.... You pay for specialist maxillofacial surgeon to say these things - he quotes $5000 to fix it. You gulp and ask the kids dad if he can apply for a loan because banks don't look kindly on teachers... He applies dutifully and the banks laugh at his 5k request (despite him earning 6 figures!!). Oh and you've used ill gotten Carer Support 'hours' to pay the 400 for the surgeon and 600 for the CT scan, which you will lie awake at night over. You refer back to the public system. The paediatrician adds his recommendation. You wait and wait and wait. The hole is there, in her 15 yr old jaw. In her 15 yr old autistic ADHD ARFID jaw. She can't get the braces that will help her to finally chew food properly until it's fixed. And even then - a loan for 11k?? The banks will laugh until they piss themselves in their tailored suits. Because it wasn't already hard enough, every day, every meal, every IEP, every useless referral to health systems that are fundamentally broken to their core. So yeah - how do we do this? How do we actually get out of bed every day and keep going? This is not how I imagined my life.
We all just want to parent - not fight. But they make us fight so hard.
I don’t even know what to say that’s so bloody horrible. I’ve heard so many horror stories in the last few hours and it’s just devastating. God I’m so sorry x
I have subscribed to you Emily. I was inspired by Josh's call out. I unsubbed from another newsletter.
It's what I can do. Aroha nui.
You’re so kind Libby. It means so much to me.
I have no words, but I do have this tattoo art of a capybara with a knife.... https://decaffedepresso.myshopify.com/products/knife-capybara-1
I love this x thank you! This is basically me haha
There's another design for your husband, just sayin 🤣
I am disgusted and horrified at their complete lack of response and dignity. I know it's not easy to do so but this is absolutely worthy of an HDC complaint. I'm a medical administrator and as much as I know I can't take on everyone's problems as my own, I cannot imagine treating a patient and their family in such a dismissive fashion. Just resolving the issue and responding appropriately in the first place would take so much less time for all involved and cause so much less anguish.
Truly if they’d just responded back then and told me they’d declined it I would have wanted to know why but it would have saved me months of angst. I think the issue is it shouldn’t have been declined and they don’t know what to do now.
Hey ❤️ the health and disability commission have been awesome. But the dhb hasn’t responded to their complaint either! They’ve worked hard but can’t do much if the dhb ignores them too I suppose?
Oh woops I missed that line. I don't think they can unfortunately :( Utter bastards.
I felt my blood pressure rising just reading this, it's absolutely appalling. I'm so sorry. As if you didn't have enough things to deal with with. ❤️
Thanks Alina ❤️