Navigating the system

Families supporting a member with a mental illness can struggle to navigate a complicated system. In the last of the Lifting the Lid series, STACEY KNOTT looks at how a person's mental illness affects their family.

Susan O’Connell, manager of Supporting Families in Mental Illness, Nelson, says families need
information and people who ...
MARION VAN DIJK/FAIRFAX

Susan O’Connell, manager of Supporting Families in Mental Illness, Nelson, says families need information and people who will listen.

Parents Sharron Martin and Colin Smith felt alone and grief-stricken when their son started to develop mental health problems as an adult.

In the early days of his illness, Martin asked her son's nurse how long it would take for him to get better. She thought that he would be better within months. The nurse told her it could be seven years, it could be with him his whole life.

"He said it so flippantly, I was so gobsmacked."

Martin and Smith didn't know what to do.

"We were really struggling. We felt very alone, grief-stricken. We could see he was losing hope, his life had been totally turned upside down. We didn't know how to help."

They had "well-meaning" friends and colleagues try to offer advice, "but looking back now showed us how ignorant they were of mental health services".

But one family friend offered life-changing advice. She suggested they visit Supporting Families in Mental Illness Nelson.

"It was like finding water in a desert. We met other parents coping with similar situations."

It was a safe place to cry, let go and feel supported, Martin said.

The service and the people they met through it, became family.

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"It's where we have made amazing friendships. Because there are parents there dealing with similar issues you know what each other is going through."

They call it an interface between clinical services.

"We would be in a very different place today if it wasn't for SF."

Manager of the Supporting Families in Mental Illness Nelson branch, Susan O'Connell, said one of the biggest hurdles for families can be helping their family member to access the right services in the first place.

The organisation is contracted through the Nelson Marlborough District Health Board to offer education, information and advocacy for families dealing with a family member who has a mental illness.

Established in 1984, it offers free in-person or telephone emotional and practical support.

"The more empowered a family is with information . . . the better they can support their person," O'Connell says.

The service helps families navigate through the mental health system, and sometimes helps liaise with other services.

"When families are distressed and upset, they have lots of questions but staff are really busy because they are looking after some really unwell people. Families don't always feel like they are being heard. If they come here we will hear them."

On the whole there were some good developments in mental health services, she said. The DHB had researched what families needed to support someone with mental illness.

"It came down to two things, they want to be included but mostly they need to have information."

The DHB this year launched a series of pamphlets, called ASK. It was an information display at every mental health service through the DHB.

O'Connell said while services in Nelson were good, people needing help could be hampered because they could not afford to go to their GP in the first place for a referral, or to be able to afford prescriptions for medication to deal with mental illness.

There was also the time it took to get into the services.

"GP referrals for a mental health assessment can sometimes take weeks and families are often concerned about their family members' wellbeing while waiting for the assessment."

Another service that has been credited by mental health service users in this series is Nikau House.

Tina Lane, who has lived on the streets, and battled mental illness and addiction says Nikau House, a NMDHB service open to adults with a history of a major mental illness, is unrivalled in New Zealand.

It offers all the things she lacked when she was living rough. There are day programmes based around physical health and wellness, employment support and work experience.

The house is managed by Richard Savill, who says they try and help people get back into the community and to live full lives.

"It's one thing to deal with mental illness its another to have full lives - that's what maintains wellness," he said.

"It's not just treating disease, it's building lives."

The centre sees 25-35 people a day, with 230 people on the books. Some people are there all day, every day, others will pop in for an occasional coffee.

There's a lounge, pool table, computers, workshops and support.

Lane will go to the house for "social interaction with like-minded people".

Most important to her, "there's no power imbalance. I find it very empowering. It's very helpful. I haven't known anything like this in New Zealand".

Josh (last name withheld to protect his aunt) moved to Nelson around 2006 to live with and care for his aunt who has bi-polar effective disorder. He lived with her for the first two years, while also working and studying. His aunt is now in a home, but Josh has ongoing input into her care.

Josh is a trained medical professional, and through his own experience with his aunt, and what he has seen in his profession, he says there needs to be more done around care planning with family and extended family for people with a mental illness.

Josh and other family members in Nelson would tell services about their concerns - that his aunt was suicidal and at risk, but felt the concerns weren't addressed. He says Mental Health Services didn't think his aunt was a danger to herself or others.

Josh saw a real risk. There were times he felt the pressure was overwhelming and he felt like he had to be on-call 24/7. He would have to rush home from work or study to check on her, or spend nights with her at the hospital.

"With the knowledge I know now, there's a lot more that could have been done or at least the processes started. It wouldn't have actually been that hard to put her on a CTO (compulsory treatment order) and keep her in hospital."

But they could never get her admitted into the acute unit.

"It felt to us it was easier to keep her out in the community than in the unit."

Since he spent so much time with her, Josh knew what was going on with his aunt and could relay this to mental health services.

"Sometimes that was taken very seriously other times it was taken with a grain of salt. They wouldn't listen to what was going on. They knew best. Whereas I had spent night on every day with her for the past two years."

He believed it came back to the budgets and he could see how much pressure and strain the services were under. That there probably wasn't a bed free that his aunt could take in the unit.

"I wouldn't blame any of the people in the service, there were times where they were absolutely fantastic they would be there as soon as we needed them at other times they were flat-tack."

When they needed to set up other appointments, there would be "page and pages" of a diary to flick through, to get to a free space.

Josh never put a complaint in.

"At the time, it was one more thing to do. Complaining was not going to change the system."

He also worried about what complaining would do to his aunt's treatment, "if it would be held against us".

Robyn Byers NMDHB, Mental Health Services director and Heather McPherson say they do not think there are issues with their funding.

They could not comment on specific cases like Josh's but said they worked to include family where they could, though they had to balance that with the rights of a client.

Byers says they would "absolutely" listen to a family member who offered knowledge on a client's presentations and needs.

She said timeframes for appointments were arranged by the clinicians concerned and depended on the client's needs. Caseloads were an average amount, and were not overburdened compared to national averages.

McPherson said services can only improve if they are made aware of problems.

 - The Nelson Mail

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