Hunter eye care: blinded by the cost

IT is a popular dinner party question: if you had to choose, which of the five senses would you least like to lose?

Eight times out of the 10 the answer will be sight. International surveys have shown that 82per cent of people fear losing their vision far more than hearing, touch, smell or taste. Yet it is a sense that an increasing number of Hunter residents are having to learn to live without. Given the ageing population, a growing number of people are being diagnosed with eye-related diseases of ageing: cataracts, glaucoma, skin cancers, diabetic retinopathy and macular degeneration.

That was why news this month that John Hunter Hospital had closed its outpatient eye clinic at the Royal Newcastle Centre sparked outrage among eye surgeons and their patients alike. The hospital was quick to emphasise it was still able to perform public patient procedures, such as cataract surgery, but its 700 public patients would have to visit specialist ophthalmologists at their private consulting rooms, as public patients, for consultations. For many that will mean a Medicare ‘‘gap’’ payment, where previously the clinic was free.

The former head of ophthalmology at the hospital, Dr Chris Challinor, went on to dispute the hospital’s claim it was focused on treating emergency surgeries and general ophthalmology surgery. While the hospital was well-equipped for the surgeries themselves, he said they did not have the proper equipment to take measurements for the surgery. The clinic closed because ophthalmologists were unhappy with the standard of equipment, which was so bad the Royal Australian and New Zealand College of Ophthalmologists in January removed the hospital’s training accreditation.

Ophthalmologists said they had battled for months to keep the clinic open. They estimated $500,000 was needed to bring it up to scratch. Ophthalmologist Dr Tim Ruddell was one of the specialists at the former clinic. ‘‘It’s not as if it was full of cockroaches, they just didn’t have equipment considered [up to the required] standard of care,’’ he said.

Challinor said he was told initially that funds were coming but then learned the hospital would not pay for the staff the equipment would require, then later that nothing would be funded.

Ultimately doctors have blamed a lack of will on behalf of hospital bosses.

‘‘They did not seem too concerned about it,’’ Challinor said.

‘‘I just think it’s incredibly shortsighted of them. They do not understand the problems involved.’’

Hunter New England Health chief executive Michael DiRienzo said the ophthalmologists wanted extra resources the hospital was not able to provide.

‘‘We all wish there were unlimited resources for health but this isn’t the case,’’ he said.

Hospital general manager Michael Symonds said the service was also working with general practitioners to better diagnose and treat more eye conditions at the local surgery through its Health Pathways partnership.

If public patients want a free eye clinic consultation they must trek to Sydney Eye Hospital, where the waiting list is between two and 13 months, depending on need.

On Tuesday the issue came to a head in NSW Parliament. NSW Health Minister Jillian Skinner said she had formally asked what exactly it was that ophthalmologists needed.

Adding to the hospital’s woes were accusations it had not replaced its paediatric ophthalmologist, meaning premature newborns were not screened on site for the potentially blinding retinopathy of prematurity.

This made it the only major hospital in Australian without such a specialist in its neonatal intensive care unit.

The hospital said ‘‘retcam’’ technology allowed nurses to screen babies and send the scans to ophthalmologists, and they were recruiting a new doctor.

Angela Solway, of Cessnock, whose five-year-old daughter needs regular check-ups with an eye surgeon, said she was only told of the eye clinic’s closure in October, one month before her appointment.

Her daughter Emily has juvenile arthritis and needs to have her eyes checked every four to six months because the condition can cause swelling behind the eye and blindness. It will now cost her $265 up front for a private appointment and she will get back only $100 from Medicare.

‘‘This is a joke – such a major hospital, a teaching hospital, and they close a much-needed clinic like this,’’ she said.‘‘When we were there you could tell they needed a bit of stuff because the appointment always went over time.’’

Another Maryland woman, who did not want to be named, said when she suddenly lost her vision on a weekend 18 months ago she went to John Hunter for help. However, they were not able to diagnose her as they did not have the optical coherence tomography or fundus fluorescein angiography scanning machines that take images of the eye’s blood vessels.

‘‘I was told to make an appointment with a private ophthalmologist but that there was no immediate urgency,’’ the 45-year-old told the Newcastle Herald.

‘‘I saw an ophthalmologist as soon as I could get in the next week but it was too late as I had a stroke of the retina.’’

She lost some vision in one eye.

‘‘I don’t blame the John Hunter at all for this – they seriously need funding in this area. My eyesight has adapted fairly well. We are talking about a major hospital here that doesn’t have the qualified staff or equipment on hand for serious emergencies such as the one I had. If it happens on a weekend or overnight you can’t get help.’’

The clinic’s closure baffled ophthalmologists, who believe there is demand for their services.

Many Hunter residents are affected by eye diseases and need public treatment, especially given the high proportion of the aged in the region. Annual hospitalisations for ophthalmological treatment in Hunter New England public health area rose from 4164 to 4335 between 2007 and 2011. All up there were more than 14,000 hospitalisations across Hunter public and private hospitals, with private hospitals carrying most of the ophthalmological burden.

One of the most prevalent eye diseases in the region is age-related macular degeneration. The degenerative disease affects the centre of the eye’s retina, which is responsible for distinguishing details. It is four times more prevalent among the aged than dementia and its numbers are set to go up as the baby boomers age.

One in seven people over 50 show signs of the condition and it is the leading cause of blindness in Australia. Half of all blindness in 2011 was caused by the disease, followed by glaucoma (16per cent), cataracts (12per cent), and other conditions including diabetic retinopathy (2per cent).

Generally cataracts are the prevalent eye disease (31per cent), followed by age-related macular degeneration (3.1per cent), diabetic retinopathy (2.8per cent) and glaucoma (2.3per cent). Cataracts are easily treatable, often with surgery. Glaucoma can be treated with drops, laser or surgery but can be equally as serious as macular degeneration.

Ophthalmologists said while diabetic retinopathy was serious, most people were typically treated before it progressed.

People with the wet form of macular degeneration need about one shot monthly of a special drug called ranibizumab, or its commercial name Lucentis, to maintain their sight. Lucentis costs between $5.50 and $35.40 at the pharmacy, then a gap payment at the ophthalmologists to have it injected. Most treatments of Lucentis last about a month and annual costs are a significant expense.

The pharmaceutical company that produces it, Roche, charges the federal government Pharmaceutical Benefits Scheme about $11,700 a year for each patient. Multiply that by the estimated 1.7million macular degeneration sufferers predicted in 20 years time, half of whom will have the treatable wet form, and it is set to be big business in the future.

It and other treatments already cost the government more than $600million a year.

However the Macular Degeneration Foundation said without the drug the costs of vision loss-related falls, nursing home care, depression and aids would be $6billion.

Val Wiltshire has lost a great deal of her sight from macular degeneration.

‘‘I can see to get around in the home but I can’t read,’’ she said. ‘‘Outside is very difficult , I cannot recognise people.’’

The 88-year-old needs the use of an electronic reader and magnifier, which set the pensioner back more than $4000. When people are losing their sight, they have no choice but to pay.

Macular Degeneration Foundation chief executive Julie Heraghty said aids were a major problem. People with hearing loss had access to a national scheme but there was not a consistent approach for the vision-impaired.

‘‘Your access to assistance is dependent entirely on your postcode,’’ she said.

The foundation fears the problem will be classified an ageing disease under the looming National Disability Insurance Scheme and not covered.

After she was diagnosed Wiltshire had to quit driving and playing bowls.

‘‘That was the hardest thing,’’ she said. ‘‘Since then I have more or less adapted to the situation.’’

Wiltshire still looks after the Bonnells Bay home shared with her husband and said independence was the most important thing. ‘‘It doesn’t depress me. I just more or less get on with it.’’

Heraghty said the key was catching any condition, whether it be glaucoma, macular degeneration or diabetic retinopathy, early because vision loss could be halted.

It’s a message emphasised by Robin Bartlett. The Valentine man was on a trip to Mount Sugarloaf in 2009 when things went awry. He was sitting at the cafe staring at the ABC television tower, which looked bent. It wasn’t.

He went to a specialist the next day and was diagnosed with macular degeneration. One eye was already too far gone but he has partial sight in the remaining eye. The 76-year-old has had injections every six to 10 weeks for past three years to keep what is left of his sight.

‘‘I can read the paper with my glasses; sometimes I might need a magnifier,’’ he said. ‘‘I can’t drive at night any more and I had to give up my truck licence. I’m an ex-fitter and turner, it took a while to come to terms with it. Now I just get around things, like any disability.’’

He urged everyone to get checked regularly and see a doctor if they experienced sudden vision loss or changes.