Mum battles red tape to get help for child with OCD

• Twelve-year-old hospitalised multiple times for severe OCD offered just one hour of therapy a week
• Family says promised "wrap-around care" never delivered
• Six-month fight to get funding for respite days already approved
• Funding due to run out at the end of August
• Health NZ acknowledges family's distress

A child who spent months in a psychiatric hospital for severe obsessive compulsive disorder was sent home with just one hour of therapy a week.

His mother - who has been forced to leave work to care for him - said the family has received none of the "wrap-around care" she was promised.

It was May last year when her "sporty, outgoing" 12-year-old underwent a sudden and dramatic personality change.

"He wouldn't come near anyone, like he was afraid. He was doing excessive exercising, counting and tapping things.

"It was like something had switched in his brain overnight, and was consuming him. He just wasn't himself."

He was setting off on 40km bike rides at bed-time, and exercising in his room until 3am.

She took him to the GP, who prescribed medication for his previously diagnosed ADHD - but that triggered what appeared to be psychotic episodes.

"He would stand still in the middle of the room and say 'Something's wrong, something's happening to me', which was quite terrifying to witness, or he would just go blank.

"He was unable to sleep, he was unable to eat, he was unable to swallow saliva. He had rapid weight loss. He was at the point of dying from exhaustion."

After weeks of trying to get an urgent referral to mental health services, she took him to a private counsellor.

"The counsellor realised immediately this was beyond her scope. She said 'your son needs help now, he's in a crisis situation. You need to rush him straight to ED'."

At Dunedin Hospital's emergency department, he became so distressed, he started kicking and punching walls and had to be sedated.

Because there was no space at the paediatric psychiatry service, he was admitted to Dunedin's adult in-patient psychiatric unit.

"I had to be with him at all times because of the adults walking around the ward."

After a week, he was transported by ambulance to Nga Kākano at Hillmorton Hospital in Christchurch, where he spent six months being treated for severe "treatment-resistant" obsessive compulsive disorder (OCD).

The specialist team described him as one of the most severe cases on record.

Clinical notes seen by RNZ describe him as "pale and gaunt".

"He looked exhausted, and yet he was driven 'like a motor' to move constantly. We were concerned he may collapse if this continued. He appeared driven and tortured by his obsession and compulsion to move. His insight and judgement were severely impaired. His main risk at admission was physical compromise due to his food restricting and excessive exercise."

His mother said the multidisciplinary team at Nga Kākano was "amazing" and taught her so much.

Yet despite the severity of her son's condition, he was discharged in January with just one hour of therapy a week with Child and Youth Mental Health Services in Dunedin and a doctor to oversee his heavy-duty medication regime.

There was no wrap-around support, "not even a teacher aide", his mother said.

"That was my biggest fear: that we would be discharged and I would be left on my own. I was promised that wouldn't happen - and it's exactly what happened."

Without support, school was "a disaster". He has had two more hospital admissions, and has been out of school most of the year.

Synergy Wellness, which is contracted by Health NZ to do mental health needs assessments and co-ordination, initially assessed him as needing 20 hours' a week wrap-around support - but subsequently admitted there was no capacity to provide that.

The family was instead offered 3.5 hours per week of "Mental Health Home Support".

However, the two approved providers in Otago said his needs were too complex for them.

The mother was also allocated 14 days' Carer Support over six months to give her a break - but told to find her own carer.

"It's impossible to find someone to care for someone with that level of high, complex need for $80 a day."

She pushed for more and got 26 days - but was not actually able to claim them, "due to Synergy not completing forms correctly".

"They told me someone else had already claimed the funding for flights! I asked for this to be investigated but it took until July to sort it out, at which point Synergy apologised for the mistake, and said there were 60 days sitting there, but they needed to be used before the end of August."

The only person she could find to give her a break was her 70-year-old father.

"And it's a bit much for him frankly, it's affected his health too."

In response to her direct plea to Mental Health Minister Matt Doocey, she received "an auto-generated email with a couple of minor adjustments to make it sound personalised", listing the government's investments in mental health services.

Services for children and young people 'lacking' - agencies

Synergy Wellness manager Rob Willers said the agency had acknowledged its mistakes and shortcomings to the family, and "made every effort to meet its obligations and make things right".

"Generally support services for children and young people are lacking, and we do the best with what we have available to us."

Community health provider Te Roopu Tautoko Ki Te Tonga stepped in after a family friend put them in touch.

"They drove straight out and were horrified that we had been left on our own, once they saw him, and jumped in to give us support off their own back."

However, Te Roopu was turned down to provide the funded support hours because it was not an "approved provider".

Manager Rhonda Ross told RNZ she contacted the needs assessment agency, Health NZ managers, clinicians, local care providers and even the Health and Disability Commission - but got nowhere.

"It is bureaucratic bullshit red tape that's holding it up. If they release this funding, she can employ someone for 20 hours a week and go back to work.

"I don't care if we get the money or not, I couldn't give a flying - whatever. It's about getting support for this kid.

"Don't get me wrong - yes she came to us an organisation, but none of us are doing this mahi as an organisation. We're doing this as humans."

Te Roopu was mainly a Whanau Ora provider - but had staff with mental health training and experience, which was what this boy needed, she said.

"It appears to have been presented as basically a glorified babysitting job, which it's not. He's a really fantastic kid but he's got some very complex needs."

In many cases, there was no mental health support available for children and young people, unless they committed a crime or became "some other kind of statistic".

"We've tried and tried everywhere we could. This mum, this poor beautiful mum, who's an incredible parent, such a beautiful family - she's had to quit her job.

"She was told the only solution was to give kid to Oranga Tamariki, or lock him up in a secure unit. What the hell kind of answer is that?"

Health NZ responds

RNZ has asked Health NZ Te Whatu Ora why it took so many weeks - and an emergency admission - for this boy to get specialist mental health support in the first place, and about the shortage of qualified care providers in Dunedin for children with complex mental health needs, and the apparent lack of a co-ordinated response between health, education and social services.

In a written response, Southern interim group director of operations Craig Ashton acknowledged the distress the family had experienced.

"We are sorry they feel they haven't received adequate care for their medical conditions.

"Our team is committed to upholding high standards of care, communication and compassion for our patients and their whānau.

"It is always disappointing to hear when someone feels we have not delivered to these expectations, and we take all patient concerns seriously."

Health NZ had "stayed in touch" with the family throughout, including face-to-face meetings, email and phone contact, he said.

An intervention plan was agreed at a cross-agency meeting with the family in June, and regular meetings continued.

"We understand that the family's support request was determined to be best managed via Carer Support hours, which can provide a break for full-time carers and which are funded directly to the carer via a claims process."

Beginning in term three, the boy is receiving two hours' of schooling a day, four times a week at a special day programme.

Following advocacy by the office of Taieri MP Ingrid Leary, the Ministry of Education special education advisor/ behaviour practitioner is working with that provider and mental health services with the goal of "transitioning" him into mainstream education.

The mother just wants her son, who is now 13, to have a future.

"He's got his whole life ahead of him. He has rights, he deserves a life. An isolated life away from everyone is not fair."

With the current funding due to expire at the end of August, the family is now waiting for another needs assessment.

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