Cash pleas unheard
Losing your hearing is frightening, frustrating and lonely. Cochlear implants can be a miracle – so why does New Zealand carry out so few? Andrea Vance and photographer Iain McGregor investigate.
The first cochlear implant in New Zealand was carried out in 1986, but we now lag well behind other developed countries.
Across the ditch, in 2017, more than twice the number of Australian patients (547) received a government-funded implant than in New Zealand.
In the UK, the National Health Service has uncapped funding and, if a hearing aid has no benefit over a three-month period, suitable patients are entitled to an implant.
In Germany, the procedure is covered by statutory health insurance. And in Brazil, cochlear implants are guaranteed to all ages through the national health system.
Lewis Williams, 58, says New Zealand has some of the most stringent assessment and access criteria in the world. She began losing her hearing in 1997, receding into a silent world before finally receiving an implant last year.
The university professor, from Tauranga, believes the Government is breaching its international obligations, under the UN Convention on the Rights of Persons with Disabilities.
She has launched a petition and hopes to get it in front of MPs on Parliament’s health select committee. Currently signed by 1638 people, she’d like to boost that to 5000.
Her pleas are likely to fall on deaf ears.
As chief executive of the Northern Cochlear Implant Trust (NCIT), Lee Schoushkoff has met multiple times with the Ministry of Health and ministers and was bitterly disappointed by the Government’s Wellbeing Budget.
‘‘It just seems to us the ‘wellbeing’ doesn’t apply to older adults,’’ he says.
‘‘These are real people who have had a quality of life that has been taken away from them and yet there is this incredible technology tantalisingly close that can enable them to get their lives back. The government has had all the cost benefits explained to them over the years, which has also been supported by international studies.
‘‘We understand that there are competing priorities within the health budget, and government cannot fully fund everything that needs support. But . . . these people have nowhere else to go; all avenues have been exhausted, hearing aids don’t work for them any more . . . the only hope they have for a life worth living is a cochlear implant.’’
NCIT, which covers patients living north of Taupo¯ , saw a record 24 new patients in December, and Schoushkoff says the number of referrals has steadily increased in the past two years.
Ad hoc funding decisions, which see one-off boosts, put strain on the system.
‘‘We have had a number of one-off funding injections over the years since 2005 and it is always welcomed when it happens as it does reduce the waiting list temporarily.
‘‘However, that is not an ideal long-term solution . . . It tends to put additional loading on to already stretched clinical staff.
‘‘The best solution is to adequately fund 120 implants for adults per year so that the programmes have certainty and can increase the clinical capacity required to accommodate them.’’
National MP Michael Woodhouse is profoundly deaf in one ear. In the future, he may have to look at wearing a hearing aid.
‘‘It is a very debilitating condition . . . I don’t think people understand quite how socially isolating. When I was at school, I would always sit on the righthand side of the classroom, so my good ear was out to the teacher.
‘‘People can think I’m aloof for ignoring them. But I can function quite well and, at the moment, I feel like it isn’t a hindrance to my social interactions except in a large crowd, where it can be quite a problem.’’
The Opposition has pledged to boost funding for cochlear implants. During the 2017 election campaign, the National Government agreed to pay for an extra 60 operations, after a campaign by 22-year-old Danielle MacKay, who spent three years on the waiting list.
The surgeries took place. But the following year, the Labourled Government discontinued the additional funding.
‘‘It flummoxed me,’’ Woodhouse says. ‘‘It was callous, but it was also politically, I think, very naive.’’ He says National will restore the funding if elected again in September.
Associate Minister of Health Jenny Salesa says she wants to see ‘‘more significant investment’’ in cochlear implants and will lobby her colleagues, including Health Minister David Clark.
‘‘It is completely inaccurate to say that National increased funding for cochlear implants, and that our Government has cut funding for this important area,’’ she says. ‘‘National cynically made a one-off election-year spend, but they didn’t lift the baseline funding to ensure their one-off hit was replicated in subsequent years.
‘‘Disability has long been underfunded in our health system, and I acknowledge that turning around decades of underfunding will take time . . . I hear from families and advocates that more is needed, including for cochlear operations.’’
Those sentiments don’t impress MacKay, who fought hard for her implant, overcoming crippling nerves to speak to a crowd on the steps of Parliament and persuading 26,000 people to sign her petition.
She underwent the procedure in October 2017. But it has been a long and frustrating journey.
A cochlear implant is very different to a hearing aid, which simply amplifies sounds. Hearing with an implant is much more active – and patients must learn to hear.
At first many just perceive noise – volume, but not speech.
They often cannot understand the sound – and the brain must ‘‘rewire’’ itself.
It can take months of hard work, speech therapy and audiology appointments before hearing becomes a reality.
‘‘There were lots of times where I would constantly take the implant out and leave it,’’ she says.
‘‘The first year was the most frustrating and emotional ride
. . . at times I did get upset because I didn’t think it was working, and it was taking too long for my hearing to get back to normal.
‘‘The truth is that it is still not perfect but it is a whole lot better . . . Hearing the birds for the very first time, the fridge and washing machine – a weird sound to learn.
‘‘I am now able to understand my family on the phone . . . it has absolutely, 100 per cent changed my life.’’
She was delighted when she landed a fulltime job at Turks Poultry in Foxton. ‘‘I’m fortunate enough that Turks love to have me working for them . . . most deaf people are stuck at home with no jobs because no-one will employ them because they can’t hear.’’
She’s ‘‘sad and angry’’ others are being denied the same opportunities.
‘‘Are we not important any more? More and more people are needing a cochlear implant, and unfortunately not everyone can afford it, so the waiting list just keeps getting longer.
‘‘It’s not a luxury to us. We want a life, to be able to work for a living.’’
Almost a month after his surgery, Ricky McLeod is back at work at the garage in the small North Island town of Raetihi, adapting to life with the volume turned up.
Business partner Rick Horne says their work days used to be punctuated by long silences, sometimes lasting two hours.
‘‘Now he asks a lot of questions, he talks a lot more. I’ve noticed a difference.’’
McLeod says he’s happier, less lonely. ‘‘I don’t feel left out any more. I feel a lot more confident now than before . . . I don’t doubt myself any more.
‘‘Am I happier? I’ve been told I am. I feel happier too.
‘‘I don’t have to look at a person to hear them when they talk . . . I enjoy that and I enjoy hearing a phone ring, the indicators going on my car. I couldn’t hear that before.’’
Sandy Brett is a close friend and travelled with McLeod to Christchurch when he underwent surgery. Each day, they carry out hearing tests together. Brett sits behind him and reads out words and sentences, which he repeats.
‘‘It’s a miracle . . . he’s a different person,’’ she says. ‘‘He’s lighter. He’s more outgoing. He’s going out of his comfort zone.
‘‘He’s just got a bounce to him that was never there before and he used to always be really serious . . . he’d laugh but not a lot, you know, so he laughs a lot more.’’
She breaks down in tears. ‘‘I would like to talk to the donor [who provided the funding for McLeod’s operation] . . . I want to say thank you so much for me and from Ricky, because you have literally changed a man’s life for the better.
‘‘And it’s only going to get better for him from now on.’’