When Karl Andrews’ son was first diagnosed with eczema as a baby, he thought it would be an easy fix. Caring for him has been a constant struggle.
Watching his son grapple with full-body eczema so bad it hospitalised him has been agonising, but he's also fighting for help to pay for his son’s needs.
As a low-wage earner, Andrews says he has resorted to Afterpay debt to help his adult son, who currently receives a disability allowance, meet medically necessary cleaning needs and other costs.
And his applications for urgent assistance to the Ministry of Social Development feel like they’re going nowhere, he told RNZ, despite submitting a thick folder of paperwork and letters from clinicians.
The need for a medical-grade full clean of his son's room each week, recommended by his doctor and therapist, goes above and beyond what Andrews can achieve himself, and he is currently paying a nurse to come in every fortnight to do it.
His son has been fighting a Staphylococcus infection that hospitalised him, resulting from his eczema. And the family is racking up extra power costs to run a dehumidifier and for the litres of hot water needed for constant laundry and cleaning, while Andrews has also purchased two new full sets of bedding for his son to help ease the skin condition.
'Easy fix right – just a bit of cream?'
When Andrews' son was first diagnosed with eczema as an infant he admits to thinking "eczema, okay, no problem, easy fix right – just a bit of cream?' But the nurse explained that what they faced was far more severe.
He had allergic reactions to pet hair, nuts and fish, "but the main one was he was off the charts for dust mites - you really don't know what you're in for until you're faced with it," Andrews says.
The work needed to care for him as a boy was "constant", and much more involved than many people realise, he says. Requiring ointments, creams, baths, and emulsifying waxes to help ease the contact of clothes with his skin, which were almost impossible to clean out: "You'd hang his clothes on the line and it was just like cardboard," so they needed replacing frequently.
'I don't want to die'
The family were relieved when the eczema eased at about seven years old.
"It wasn't until he hit around 18, 19 [years old] that here we are now. He messaged me – I got a whole series of messages late at night on my WhatsApp, that said 'I don't want to die'. It might sound dramatic, but ... his whole arms were covered in staph ... staph obviously kills, right – it can poison the blood.
"For the first time as a teenager he had full blown eczema again. It had come back. And it's all over his legs - it's still there, we're still trying to get that off - it crept up his chest and down his arms ...
"I took him to the doctor, dealt with it immediately. We managed to get rid of a lot of it through cleaning, so we went through the cleaning process, and also got him on antibiotics."
The full-body eczema makes it difficult for his son to move about, let alone to clean, and he has now emptied all his belongings out of his room: "His bedroom has just got shelving with medication on it, and that's it - because anything that holds dust, he won't put it in his room'.
A medical-grade clean at least once a week
"The doctor's concerned about stress levels. As a teenager – he told me what it's like to go to bed with a full coat of eczema: 'I can't sleep'. It adds stress. The doctors are saying 'he's not going to be able to focus and do normal things like normal people'."
Stress can worsen eczema, and Andrews says they are battling to gain ground on this bout, to get off the medications. They have been told by the doctor they need the medical-grade clean at least once a week, as well as vacuuming two or three times a week.
"What's happened is I'm paying for the cleaner presently, and I can only afford once every fortnight. We are on a proper chemical clean from a professional cleaner - she's a nurse, when she comes in and does her job he automatically feels relief in his room .. we're talking hospital grade chemicals."
Meanwhile the cost to run a dehumidifier is also running up the power bill, and giving him 'nightmares', Andrews says, and "everything's a hot water wash, you can't just kill dust mites in a cold water wash."
Eczema Association of New Zealand president Vanessa Jenkins says eczema is prevalent in New Zealand, ranging from mild to more extreme cases, and clearer parameters are needed for the supports available to people living with it.
When people apply for support, it was difficult for those assessing the requests to understand the profound effects eczema could have, or the individual's specific needs, when reading about it from a form, Jenkins says.
And the costs involved could be "huge": "Massive amounts of time and extra money go into managing the skin, making sure people stay safe. Things like the cleaning, things like the washing, and all of that kind of thing, it's all very specific and it does cost extra funds.
"Dust is a huge factor with eczema's severity, and this ranges from babies to right the way through. To be able to have a sterile clean environment it can make a massive difference... in severe cases those are really important things, things like the hot washes – they can make a difference."
New Zealand had also fallen behind in the medicines and treatments on offer to combat eczema, by about 10 years, Jenkins says.
Medsafe has taken the unusual step of issuing a "do not use" for two products - Naturacoco Moisturising Cream or Dok Apo Moisturiser. (Source: 1News)
Funding request going 'in loops'
Andrews says his requests to the Ministry of Social Development for financial help to help meet his sons' medical needs have felt like a series of ongoing loops, going nowhere.
"It seems to be kicking the can down the road. I've gotten letters like 'can you send us all your power bills for the past 12 months, can you us notes from the psychologist, can you send us notes', but I've had no decision letter."
Ministry for Social Development Regional Commissioner Gagau Annandale-Stone told RNZ extra help would be considered "once we have received the clinical evidence".
A Disability Allowance was granted to help cover Andrews' son’s medical fees and prescriptions for eczema, and backdated to July. And while "generally, Disability Allowance cannot be used to cover indoor house cleaning costs," Annandale-Stone says they have asked for clinical evidence about whether the son is able to do the cleaning himself or if the services can be provided by other agencies: "This is so we can consider any support we could offer."
"Where someone's disability or health condition is severe enough that they need help with interior home cleaning, this would generally be provided through the health system, following a GP referral and a needs assessment," Annandale-Stone says.
"We are awaiting further information and verification in relation to his application for assistance with cleaning costs, bedding, and mattress costs, before making final decisions on these. Decisions are pending on power and detergent costs, and whether these exceed normal expected costs."
SHARE ME