Anne Harper, 100 years old, blind but "a very astute and alive woman", died of scabies.
Of course no one dies of scabies - tiny mites that burrow in the skin surface causing intense itching. It was the secondary infections - cellulitis, an eye infection, and pneumonia, plus being overrun with thrush, that ended her long life.
But the relatively easily treated skin infection had gone unrecognised for months at the Tauranga rest home, Cedar Manor, where she'd been living. Her family are distraught.
"It was all avoidable. If she had been diagnosed months earlier and treated she'd still be with us," says her son, Geoff Harper.
"It could have been prevented. This is what we are so mad about," says daughter Philippa Bailey.
Worse still, the family speak of watching their much loved mother die in considerable discomfort.
"She was writhing in pain on her hospital bed, scratching at the undiagnosed scabies rash, in the end drawing blood. They had to put stockings around her hands to stop her from scratching," says Harper. "She had pneumonia in one lung and she was coughing all the time and she couldn't swallow. The whole thing was just..., I wouldn't like to repeat it again, put it that way. It was very stressful on the family," says Bailey.
Even at Tauranga Hospital, where Anne was admitted in early September, it would take eight days before a specialist dermatologist confirmed "diffuse crusted scabies" and ordered "Lyderm stat".
But by then, although she was treated with the insecticide cream, and with antibiotics and antifungals, it was too late. No longer considered acute, she was discharged to a "level 5 care" rest home where she died three days later. Was she any better when discharged?
"No she was no better, she was just the same," says Bailey. "I think really they wanted the bed. You know what hospitals are like, they do like to get rid of people - especially before the weekend. They wanted her to go out on the Friday and we said no."
For one born in 1910, who had lived through two world wars and the Depression, married a dairy farmer and had five children, it wasn't a dignified end. But then death often isn't.
All the parties involved in the care of Anne will defend their actions, saying in the circumstances they did the best they could. But for Harper, an ex-district councillor and an accountant trained in auditing; and his wife Jill, a registered nurse and formerly a charge nurse in a state-run rest home, there are questions.
Not just about what happened to Anne, but what it reveals about the state of aged care in New Zealand. The couple, both of retirement age, wonder what standard of care they can expect.
The Harpers are far from alone in their concerns. Several recent reports point to a tsunami of problems bearing down on the sector: a burgeoning ageing population; a lack of facilities; a lack of Government money; and poor standards, auditing and complaints procedures.
A picture is emerging of a sector mostly run by multinationals more focused on profit than care, and stifled by a morass of bureaucracy with a low paid workforce.
Green MP Sue Kedgley, one of the key instigators of A Report into Aged Care: What does the future hold for older New Zealanders?, compiled by Labour, the Greens and Grey Power, says what happened to Anne Harper is not just a one-off mistake.
"Sadly it's part of a much larger problem with the entire aged care industry." Travelling around the country and speaking to those who work in aged care, and people with relatives in aged care she's been shocked at what's been revealed.
"There were stories of neglect and even abuse - of residents suffering from chronic dehydration or malnutrition; residents being sedated to make them more easily managed; residents not being toileted properly and becoming incontinent; and residents who weren't diagnosed properly for common conditions such as bed sores, urinary tract infections and falls, and who ended up in hospital as a result."
Last week she received an email from a woman whose father, in a rest home, developed scabies which went undiagnosed and unattended for weeks until he ended up in hospital. He was also given anti-psychotic medication to sedate him, against the family's wishes, and lost all mobility, and even his speech, as a result.
"At one point she turned up unannounced to her father's bedside to find him unwashed and smelly, semi-comatose in an armchair. There were three full urine bottles piled on a dresser, along with dirty pyjamas. He rapidly lost weight after suffering a fall, became skeletal and dehydrated, and died shortly afterwards."
Kedgley says the key problem is the acute shortage of staff in many homes. It's a view that coincides with what the Harper family found, but it's only part of the story.
Anne Harper moved into Cedar Manor about nine months ago from an assisted living facility where she was getting good care - seven showers a week and assisted with food and other needs. But there was no cover for her from 8pm until 7am and after a fall from bed the family decided a facility with 24-hour care was needed.
They had heard good reports about Cedar Manor and the brochure said it all: "...a community focused, welcoming, well-equipped purpose-built home providing professional care for older people who no longer can live independently...".
But within a few weeks concerns began to emerge. Anne was now only getting three showers a week and there were other small problems with getting assistance. The family discussed their concerns with the staff and made some headway resolving some of them. But they also found with just four caregivers on during the day for 55 "level 4 care" residents, the staff were rushed off their feet and often simply didn't have the time.
"The general standard of hygiene and care was vastly lower than what we had anticipated," says Geoff Harper, who also began to learn a lot about how standards were set down by Bupa Care Services, the company which owns Cedar Manor and other rest homes. "They said they were complying with the general standards and we said, 'What are these?"' To cut a long story short,Harper found that he had to buy the General Standards from the Standards Association at a cost of $206.
On reading them he was further dismayed at how vague they were. Standard 81341.42 for a safe and appropriate environment says "consumers are provided with an appropriate accessible physical environment for facilities that are fit for their purpose".
For toilets, showers and bathing facilities the standard says "consumers are provided with adequate toilet shower and bathing facilities". As Harper points out, it all depends on what's considered "adequate" and what's "appropriate". He was also told 1.65 hours per resident per day was the industry standard for Cedar Manor.
Harper did some more digging and found the norm overseas is 3.18 hours per resident per day. He also discovered that the General Standards were formulated in 2008 by a committee of 22, heavily weighted in favour of provider interests - with just three representing the interests of the residents of rest homes and mental health institutions.
"The General Standards took the regulations from prescriptive to aspirational and in my view are unenforceable and vague," says Harper. He believes some rest home providers may be using the loopholes in these Standards to reduce the staffing and services to residents.
"We certainly meet the guidelines for Cedar Manor and we certainly meet them across the country on the whole," says Bupa Care Services chief executive Dwayne Crombie. He says the standard for care is 2.0 hours per resident per day - comprising a caregiver and registered nurse component. He says Bupa's average across all its facilities is 2.7 hours on rest home care, 3.7 hours for dementia and about 4.8 hours on hospital care."The residential aged care sector isn't home," says Bupa Care Services Quality and Risk general manager Gina Langlands. "We cannot reproduce the care that can be provided at home. It is always going to feel less."
Cedar Manor general manager Judi Strachan pointed out that while three showers a week was the minimum, it didn't mean residents went to bed at night unclean or unwashed. "Mrs Harper actually had many more than three a week and on the other days a full body wash."
Unable to resolve their concerns about hygiene processes and basic care at Cedar Manor, the Harpers lodged a complaint with the Health and Disability Commissioner at the beginning of June who referred the matter to the Bay of Plenty District Health Board to carry out an "issues-based audit".
In a statement the DHB said: "We are satisfied that the Provider has taken all reasonable steps to address the concerns of the Harper family and the Audit did not give the DHB reason to believe that further action, other than follow up on the identified corrective actions, is necessary by the DHB."
The Harper's frustration with the process is that they didn't receive the outcome of the audit until October after Mrs Harper had died and throughout the investigation no one actually visited their mother. In essence the audit just looked at management structures and processes. Geoff Harper wonders how this is possible - especially considering that during this time his mother was suffering from undiagnosed scabies.
The Harpers get some support for their view from the Auditor General who in in his December 2009 report, Effectiveness of arrangements to check the standard of services provided by rest homes, said: "Auditing by designated auditing agencies has been inconsistent and sometimes of poor quality."
But the auditor general found issues-based audits carried out by DHB's had been effective in finding failings missed by other audit processes.
In reviewing the Harpers' case, Bupa's Langlands said: "There was excellent documentation. There was everything within the file that I would have wanted access to." She says Cedar Manor staff "bent over backwards to try and resolve the concerns of this family and we were unable to do that." She points out that in terms of treatment of Mrs Harper's persistent rash, staff were following the diagnosis of Grover's disease by Dr Neil Matson, the doctor looking after her.
Dr Matson told the Herald: " I must admit to the delay in diagnosis. A dermatology referral was a possibility in private as the next option, as there is significant delay at hospital clinics. Certainly I did briefly discuss with nurses that an option may be a trial of treatment for scabies. This condition can be difficult to diagnose, but is easier to consider in retrospect. It has been called 'the 7-year itch' because of this common delay in diagnosis. Scabies obviously has 'hygiene' considerations and perhaps subconsciously we underdiagnose initially."
What frustrates the Harpers is that Jill Harper, who has experience in geriatric care, had asked staff early on to rule out scabies or bed bugs. Geoff Harper had also written to Dr Matson in August asking for a specialist opinion.
Bay of Plenty District Health Board general manager for Governance and Quality Gail Bingham confirms that scabies is difficult to diagnose. "Our clinical people tell us it is missed in 50 per cent of cases." She says when Mrs Harper was admitted to Tauranga Hospital staff started treatment for the rash even though they didn't know what was causing it.
The hospital medical file on admission records a discussion with the GP noting "Grave's Disease" rather than Grover's and "no scabies in rest home". Results for skin scrapings taken at the time record "no fungal elements seen".
Bingham says the medical file shows Mrs Harper was getting appropriate pain medication and that she was uncomfortable because of the itching which is different from pain. She said though family requested intravenous morphine rather than the oral Oxynorm painkiller, the medical team decided it wasn't appropriate. "IV morphine for a lady who is 100 years old is not the medication of choice". Even oral medications caused her to become extremely drowsy and they had to back off the doses because she couldn't function."
Bingham says having to wait eight days to see the dermatologist was normal. "We have a limited supply of dermatologists. It takes a little while for them to get round all their referrals. It's actually quite quick for a dermatology consult. They are just so busy."
The discharge summary, says Bingham, showed Mrs Harper was "actually in fairly good shape".
Shortly after Mrs Harper's death the medical officer of health got in touch with Cedar Manor to advise that the rest home did indeed have scabies. One resident was found to be infected and all staff and residents in the wing were given treatment on September 29 as a precautionary measure.
Several members of the family have also had to be treated, which has given them some understanding of what their mother had to deal with over several months.
They have forwarded the new information to the Health and Disability Commissioner who is yet to decide whether to launch an investigation.
* 84 per cent increase in population aged over 65 (from 512,000 to 944,000) between 2006 and 2026.
* 134,000 aged residential care beds and 715 certified rest homes in 2009.
* $785 million paid to providers for long-term residential care in 2008/09.
* $2000 million estimated expenditure by 2021.
* $81.90 per resident per day - average government subsidy paid to providers for rest home care.
* $155.31 per resident per day - average subsidy providers want to cover increased costs.
* 64 per cent of residents are subsidised
* 57 per cent of residents are in rest homes, 31 per cent in hospitals and 8 per cent in dementia units.
* 68 per cent of care facilities are controlled by "for profit" operators.
* 33,000 people work in the sector.
* 27 per cent higher "acute hospital days of aged residential care residents" in New Zealand compared to international benchmark in 2008. Twice the level of emergency department.
* 42 per cent higher prescription drug usage compared to an international benchmark in 2008.
Sources: Aged Residential Care Service Review, Grant Thornton, September 2010; Financing of long-term residential care in New Zealand: Swimming against the tide, Toni Ashton and Susan St John, July 2006; Statistics New Zealand; A Report Into Aged Care: What does the future hold for older New Zealanders? - Labour, Greens and Grey Power, October 2010.
Anne Harper, 100 years old, blind but "a very astute and alive woman", died of scabies.