What happens when we treat aged care residents as “consumers” (Inside Story Sep 14, 2020)

Decades of misguided policy sowed the seeds of a human rights disaster.

Did the federal government have a plan to protect aged care residents from Covid-19 outbreaks? It’s 12 August 2020 — the third day of the aged care royal commission’s special hearings on the Covid-19 response in aged care — and counsel assisting, Peter Rozen QC, is trying to get to the bottom of this question.

At the other end of the video link, sitting at a single long table in Canberra, are the three most senior Commonwealth officials entrusted with oversight of Australia’s aged care sector: commissioner Janet Anderson, who heads the aged care regulator; Professor Brendan Murphy, secretary of the Health Department; and Michael Lye, the department’s deputy secretary for ageing and aged care.

Rozen is grilling the panel about evidence presented to the commission earlier that morning suggesting that the federal government failed to plan adequately for Covid-19 outbreaks in aged care. The commission has been examining two documents: the health sector’s emergency response plan — a 56-page document outlining the overall health sector response that only mentions aged care 21 times and includes no specific action points or plans for the sector — and the guidelines for individual aged care facilities issued by Communicable Diseases Network Australia, a government bodywhich the government has repeatedly cited as evidence it had a national plan for aged care.

In excoriating testimony a few hours earlier, gerontologist Professor Joseph Ibrahim had described the CDNA guidelines as a “tick sheet” designed for “some poor bugger sitting in an aged care home, a middle manager”, rather than a national plan. The guidelines themselves repeatedly stress their advisory and non-comprehensive nature, stating that while they “provide guidance on good practice”, they are “not a substitute for advice from other relevant sources”, and that “readers should not rely solely on information contained within this guideline”. They place the onus on planning for Covid-19 squarely on providers, noting that “the primary responsibility of managing Covid-19 outbreaks lies with the [aged care facility], in their responsibility for resident care and infection control”.

Rozen is zeroing in on the fact that the first two versions of the guidelines — released on 13 March and 31 April respectively — did not include any federal government role in dealing with outbreaks in aged care. It took a full four months before any Commonwealth responsibilities were added into a third version, on 14 July.

Nonetheless, the two health department witnesses are adamant that a national plan for aged care existed all along, with no lack of clarity about the federal government’s role. Murphy insists that the CDNA guidelines are a “foundational and comprehensive plan”. In his sworn statement, Lye claims that he doesn’t consider there was any “lack of clarity about the roles and responsibilities of approved providers and state and federal government authorities during the response to the Covid-19 pandemic”.

Rozen presses Lye on why the federal government’s responsibilities were not included in the first two iterations of the CDNA guidelines.

Lye demurs.

Rozen presses him again: “I’ll ask you to accept from me that there is no reference at all to the Australian government’s role in relation to aged care in either of the first versions of this document or the second. Does that surprise you?”

Then comes a jaw-dropping moment: Murphy cups his hand over his mouth and whispers the phrase “Australian government document” to Lye.

Lye picks up Murphy’s hint. “Look, it’s our document, counsel, so it’s an Australian government document that deals with aged care,” he tells Rozen. “So it’s possible that in first version that was implicit and then it has been made explicit.”

Embarrassingly for Murphy, the microphone has picked up his whisper.

“Did Professor Murphy just whisper to you the answer he suggest you give, Mr Lye?” Rozen asks.

There’s an excruciating beat of silence.

“I just — I just said it was an Australian government document, which — which it is,” Murphy replies defiantly.

It’s tempting to zero in on the shock value of this moment, and linger there. After all, it’s not every day that a secretary of the Department of Health is caught coaching a witness at a royal commission. But more astonishing than Murphy’s whispered intervention is the substance of what he was suggesting.

Murphy’s claim was that the federal government’s CDNA guidelines didn’t need to state the government’s role or responsibilities in managing Covid-19 outbreaks in aged care — because the federal government itself produced the document.

For aged care providers, this is a bit like reaching into your seat pocket for the emergency exit instructions on a plunging aeroplane and finding a card that advises you to come up with your own exit strategy, with no information on what the plane’s crew will do — then being told the crew’s role is implied because the airline printed the card.

The emerging picture of the federal government’s failure to prepare Australia’s residential aged care facilities for Covid outbreaks is so damning, the omissions and errors so comprehensive, that it will likely take years for its full scope to come into view.

What do we know so far? The foundational failure was the fact that the government entirely neglected to take account of the existing shortcomings of the aged care system in considering what response would be required. The existing operating environment in Australian aged care — in which the baseline standard of care is already deficient, and the workforce lacks the skills and the numbers to cope with the needs of the elderly within the system — is not mentioned in either the CDNA guidelines or the overall health sector emergency response plan.

Nor does either document refer to the issues that prompted the royal commission in the first place: chronic understaffing, skills shortages, ineffectual regulation, endemic neglect and basic failures of care, over-reliance on chemical and physical restraints, sexual and physical abuse, malnutrition, dehydration, preventable injuries and premature deaths.

The royal commission also heard that the federal government did not consider the specific challenges of infection control in an aged care setting, including the high degree of physical contact and the home-like environment, nor the operational differences between aged care facilities and hospitals, nor the fact that personal care workers — the majority of the aged care workforce, who can have as little as a six-week certificate qualification, or in some cases no qualifications at all — lack the basic awareness of infection control that is taken for granted elsewhere in the health sector. In short, the government did not consider any of the sector’s widely known failings when considering what measures or support it might need during an unprecedented pandemic.

The government also failed to ensure a standardised approach to infection control. It had no mechanism to make high-level infection control expertise available to providers from the outset of an outbreak: at Newmarch House, for instance, where the outbreak claimed 19 lives, such an expert was only on site after two weeks. The government’s online training in the use of personal protective equipment was voluntary, and as of early June only one-fifth of the workforce had completed it. Face masks were not made compulsory for aged care workers until 13 July, long after scores of residents had died at both Dorothy Henderson Lodge and Newmarch House, and after residents had begun to die of Covid-19 in Victorian aged care facilities.

The government also provided incomplete or incorrect advice to providers, notifying aged care facilities as late as August that they needed to plan only for a loss of up to 30 per cent of their workforce in the case of an outbreak — in spite of Dorothy Henderson Lodge having lost almost its entire workforce within the first 48 hours of its outbreak back in the first week of March, and despite overwhelming international evidence that aged care workforces were being decimated in the case of major outbreaks.

Nor had the government established clear channels of communication and responsibility, leading to buck-passing and critical delays in information sharing between various levels of government and the regulator. One result was a four-day delay before the regulator notified the Health Department of the outbreak at St Basil’s Home for the Aged, which has now claimed 44 lives, or more than a third of its residents.

Many of the meagre measures the government had put into place were not properly or fully implemented. Unbelievably, as of 21 August the government had spent only half of the $43 million it had allocated for its surge workforce, in spite of widespread reports of residents being left soiled, unfed and without other basic care in affected homes across Victoria. And while it distributed $92 million to aged care providers in a “one worker, one site” scheme to stop staff working at more than one facility and mitigate the spread between facilities, the government admitted it had no way of enforcing the directive or tracking whether it was working.

The federal government also actively resisted simple measures that would improve providers’ capacity to plan for and combat the spread. Despite repeated pleas from providers and peak bodies, the federal government refused to release heat maps of facilities with outbreaks — even confidentially to providers — until September, citing the need both to protect providers from reputational damage and to shield them from intrusive media scrutiny. This decision significantly hampered providers’ ability to control whether casual workers from facilities with known outbreaks were rostered on in their facilities.

Nor, in spite of scores of facilities having experienced uncontrolled spread of Covid-19, has the government created a consistent national protocol for hospital transfers of infected residents to ensure the safety of those who are not infected.

Perhaps even more concerning is the degree of defeatism on display in testimony by government officials: at the Senate select committee on Covid-19, Brendan Murphy framed aged care cases and deaths as a fait accompli, saying that: “I don’t think it’s possible in any part of the world to make a facility protected from Covid, no matter how well staff do.” In the same hearing, Aged Care Minister Richard Colbeck declared that “no country has been able to avoid outbreaks in residential aged care which we’re seeing in Australia. Where there’s been widespread community transmission, the reality is that we will continue to see outbreaks in all parts of our community, but we see, tragically, the results that occur in residential aged care.”

As well as indicating a fatalistic acceptance of aged care deaths, these assertions are inaccurate: South Korea has a comparable number of total cases to Australia — some 22,055 cases to Australia’s 26,607, yet has avoided widespread aged care outbreaks or deaths.

If the government’s response has been disastrous, the regulatory response has been no better. The newly amalgamated aged care regulator, the Aged Care Quality and Safety Commission — established in January 2019 — suspended unannounced spot checks of providers in March, leaving the sector essentially without regulation during the time it needed it most.

Worse, it allowed providers to self-assess their own readiness for Covid-19 outbreaks, emailing them a survey that included questions such as “Does the service have an infection control respiratory outbreak plan?” and “Overall, how would you rate the service’s readiness in the event of a Covid-19 outbreak?” Unsurprisingly, 99.5 per cent of Australia’s aged care providers assessed their Covid-19 readiness as either satisfactory (56.8 per cent) or best practice (42.7 per cent) — an assessment that has proven to be catastrophically overconfident. Only 0.5 per cent of aged care providers conceded that improvements were needed.

The regulator did not verify these surveys with in-person visits; instead, commissioner Anderson testified at the royal commission that when the regulator rated an individual aged care provider to be at a “high or very high risk” of a Covid-19 outbreak, it audited these responses through “a rigorously structured” phone call in which, she said, “we asked them the usual questions”. On occasion, she testified, the regulator would also ask providers to submit additional information. It was only in instances of “unmitigated risk” that the regulator undertook a site visit.

Only 2345 of Australia’s 2717 residential aged care providers completed the self-assessment survey. It is unclear how, if at all, the regulator followed up with the other 372.

Even as Victoria’s aged care facilities were swamped with cases in August and the inadequacy of the self-assessment mechanism was being interrogated at the royal commission, Anderson testified that the regulator’s fundamental approach of allowing providers to self-assess would continue. When asked how the regulatory approach had altered in the wake of the self-assessments, she replied that the regulator would be “repeating a self-assessment survey with a different and larger set of questions” in order to give providers “the most detailed opportunity to assess their own level of readiness and then to report back to the regulator”. It wasn’t until August that the regulator commenced an infection-control monitoring program.

Curiously, the regulator issued no sanctions or notices to agree — the most serious regulatory instruments available to it — to Victorian aged care homes between 1 January and 16 July, and it only issued two non-compliance notices in the entire year. Yet since 16 July, when Covid-19 had well and truly begun to spread like wildfire through Victorian aged care homes, it has put 20 sanctions and notices to agree in place in Victoria. Aside from two notices relating to financial malpractice, all of them revealed, among other serious issues, that the facilities were not meeting Quality Standard 3(g): the requirement to minimise infection-related risks. Clearly, leaving assessment of facilities’ preparedness for Covid-19 in the hands of providers was a disastrous misstep.

Would these widespread infection control shortcomings have been uncovered and remedied earlier if the regulator had not allowed providers to self-assess their own readiness for outbreaks, or had not suspended unannounced visits? The regulator’s belated issuance of 20 sanctions and notices to agree since July suggests so. Yet between January and March — crucial months in which Covid-19 was raging through aged care facilities overseas — the regulator only conducted a total of twenty-nine on-site visits among the 766 facilities in Victoria, a mere 3.7 per cent of Victoria’s aged care homes.

In the meantime, with nobody in the federal government or at the regulator helming our aged care response, the aged care sector and its workers were left to fend for themselves.

The federal government’s hands-off approach to the aged care sector during the pandemic is no accident: it is entirely consistent with its existing aged care policy settings and agenda, which privilege the interests of providers over those of vulnerable residents, and which have sought, in various ways — often abetted by providers and lobby groups — to progressively deregulate the sector and reduce governmental oversight. These policy settings are underpinned by the pernicious neoliberal shibboleth that vulnerable aged care recipients are empowered “consumers” who exercise “choice” within a free market, and that bad providers will ultimately be driven out of business by competition rather than regulation.

Beginning with the Howard government’s 1997 Aged Care Act — which removed probity requirements for providers, decoupled federal funding from care provision, and removed the requirement for a registered nurse to be on duty at all times in aged care — privatisation and deregulation have continued apace, significantly blunting the regulator’s power, decreasing public transparency about how Commonwealth aged care funding — now an annual $21.7 billion — is spent, and reducing regulation and oversight.

The 1997 Act and subsequent legislation, including Labor’s 2013 Living Longer Living Better reforms, have transformed Australia’s aged care sector, attracting providers “with a profit-maximisation orientation”, as management academic Marie de la Rama notes, rather than an “orientation to care”. With its stated aim of reducing the “regulatory burden” for providers, the Abbott government’s 2015 Red Tape Reduction Plan further eroded government oversight of the sector: among other objectives, it aimed to “streamline financial requirements for aged care providers” and allow consumers to “self-regulate their own care where appropriate”. Together, the 2016 Aged Care Sector Statement of Principles and Aged Care Roadmap consolidated this free market focus, explicitly identifying a “sustainable, consumer driven and market based system” as the ideal towards which the sector must strive.

In July last year, the 44 accreditation standards for operators were reduced to a mere eight quality standards, which are now phrased in terms of “consumer outcomes”. Standard 3, for instance, states: “I get personal care, clinical care, or both personal care and clinical care, that is safe and right for me.” Rigorous quantitative standards are repeatedly eschewed in favour of “tailored” care and consumer choice — all of which might make more sense if the consumers in question were not vulnerable, elderly aged care residents, over half of whom suffer from dementia, many more of whom are otherwise incapacitated or physically disabled, and all of whom may fear retribution or neglect if they complain about their care.

Accompanying these meagre, vague quality standards is the newly minted Charter of Aged Care Rights, which supposedly sets out aged care residents’ consumer rights, including the right to be treated with dignity and respect, the right to safe and high-quality care, and the right to have control over and make choices about care, including where the choices involve personal risk. In reality, however, as legal academic Linda Steele and her co-authors have noted, the charter is a “soft rights document, in the sense that it is not enforceable”.

Concerns about the human rights abuses experienced by aged care residents run so deep among human rights scholars that some have suggested that the confinement, segregation, restrictive practices, and physical and social isolation that aged care residents experience rise to the definition of a “place of detention” for the purpose of monitoring for torture under the United Nations Optional Protocol to the Convention against Torture.

Yet the deregulation of the sector has been embraced wholeheartedly by both providers and lobby groups, which have vocally opposed increased oversight and mandatory staffing levels and have had undue influence on the formulation of federal aged care policy. Last year, the national industry group Leading Aged Services Australia, or LASA, even opposed mandatory air conditioning in aged care homes when the government considered including the requirement to provide a “comfortable internal temperature” among its quality standards.

In many cases, industry lobby groups have also contributed to the deskilling of the aged care workforce and the propagation of consumer-oriented rhetoric. In one prominent example, the chief executive of COTA, Ian Yates, advocated “consumer-directed care” and “consumer-centric practice” at the royal commission and asked rhetorically whether “everything that a nurse used to do ha[s] to be done by a nurse?”

The Covid-19 pandemic has exposed the mendacious myth of the “aged care consumer” once and for all. Far from being empowered consumers, aged care residents have been utterly powerless to exercise any agency during the pandemic, at the very time they have been subjected to egregious human rights abuses: sedated, placed on end-of-life medication, and denied the hospital care that all other Australian citizens enjoy. Residents have been left without food or water for hours or days, and left in soiled incontinence pads; many have been denied telephone contact with their families and kept in conditions akin to solitary confinement. When family members have attempted to extract them, they have been barred from leaving the premises. Many have been exposed to a deadly virus by care workers who are in many cases undertrained and lack appropriate PPE, and infectious fellow residents with whom they have been kept in close quarters. They have died alone, without the comfort of family — and in some cases, they have reportedly not received adequate palliative care or pain relief.

These human rights abuses are unfolding against a backdrop of ageist public discourse in which aged care residents’ very right to exist is being debated. Drawing on a long history of senicidal thinking that equates economic productivity with social worth, economists, op-ed writers and other commentators have repeatedly suggested that the elderly’s welfare is not worth the hit to the economy. As the aged care death toll in Victoria approached 500, former prime minister Tony Abbott suggested that governments should ask “how much is a life worth?” and weighed up the merits of making the elderly “as comfortable as possible while nature takes its course”. Prime Minister Scott Morrison referred to aged care residents as “pre-palliative”, implying they are inhabitants of what has been called a “liminal zone between life and death” in spite of the fact that the average length of stay in residential aged care is 2.6 years, and many residents stay for longer periods yet.

The ageism extends to those clinicians and public health officials who have overtly argued that aged care residents should not be admitted to hospitals. This attitude was reflected in a decision taken by NSW Health in relation to Newmarch House “not to decant residents into hospitals given the precedent this would set”. Residents are “decanted” like an inert, inanimate substance, rather than moved — and they certainly do not move of their own will. The deaths of aged care residents have even been described as “learnings” by politicians attempting to reframe human tragedy as an educational opportunity for our political class.

Amid the disempowerment, dehumanisation and degradation of aged care residents during the pandemic, the foundational fantasy of contemporary Australian aged care policy — that the system is a free market full of consumers exercising choice — crumbles into dust.

Left with the unenviable task of explaining why the government has been so deplorably unprepared to combat outbreaks in aged care, Scott Morrison recently abandoned his talking points about having had a “comprehensive” national plan, and gave the crisis a new spin. The outbreaks in Australian aged care were “unforeseeable”, he insisted.

The same notion was repeated by the embattled Aged Care Minister Richard Colbeck in a disastrous appearance at the Senate select committee on Covid-19 during which he was unable to recall the number of aged care residents who had died of the novel coronavirus, nor the number of current infections — and nor even whether he had ever briefed the cabinet about the royal commission’s interim report, Neglect, published in October 2019.

The government’s claim that the virus’s effects in Australian aged care were unforeseeable merits close scrutiny. In doing so, it is important to consider what was known about Covid-19 in aged care internationally, well before the horrifying outbreaks in Victorian residential aged care that had, by 12 September, claimed 563 lives, or 78 per cent of all Covid-19 deaths in the state.

In Washington in late February, a Kirkland nursing home, Life Care Center, made international headlines as the first Covid-19 outbreak in aged care; ultimately, two-thirds of its residents contracted the virus, and 37 died. On 10 March, eighteen residents of a single nursing home were found dead in Italy. By 18 March, Belgium had called Médecins Sans Frontières into its nursing homes, where they found staff, without protective equipment, showing the signs of trauma common in disaster zones. A week later, Spain’s defence secretary, Margarita Robles, reported that soldiers sent to disinfect nursing homes had found residents abandoned and dead in their beds.

The following month, in early April, researchers from the London School of Economics International Long-Term Care Policy Network had found that 50 per cent of all Covid-19 deaths in Europe were occurring in aged care homes. On 16 April, it was reported that in the Résidence Herron in Montreal, residents were found listless, dehydrated and unfed for days, with “excrement seeping out of their diapers.” That same week, Canada’s chief public health official, Dr Theresa Tam, noted that approximately half of Canada’s Covid-19 deaths — at that stage, 1193 people — were occurring in long-term care homes.

At the same time, in the United States, seventeen bodies were found in bags in a nursing home in New Jersey after an anonymous tip to police, and analysis published in the New York Times noted that the virus had taken an aggressive hold in nursing homes, where “a combination of factors — an ageing or frail population, chronic understaffing, shortages of protective gear and constant physical contact between workers and residents — has hastened its spread.” By the end of April, it was known that in Spain alone there had been more than 16,000 Covid-19 deaths in aged care homes.

By mid May, it was clear that Covid-19 had killed more than 29,100 aged care residents and staff in the United States, and 13,964 aged care residents in Britain. By 17 May, it was known that 90 per cent of the deaths in Sweden were among the elderly, and half of those were in aged care homes. By 12 June, 19,394 Covid-19 deaths had been recorded in British aged care. By mid June, American aged care deaths had reached 50,000. By early July, official estimates from Spain suggested that 18,830 aged care residents had died from Covid-19.

All of these reports were in the public domain long before the outbreaks in Victorian aged care.

But the government did not even need to look at that overwhelming international evidence to ascertain the scale of the threat. It could have seized on the evidence from two early local outbreaks in aged care: the outbreak at Dorothy Henderson Lodge, which commenced on 3 March and lasted until early May, resulting in the deaths of six residents of the sixteen infected; and the disastrous outbreak at Newmarch House, which commenced on 11 April with a staff member testing positive and ultimately resulted in twenty deaths among thirty-seven infected residents.

An independent review of the Dorothy Henderson outbreak by Professor Lyn Gilbert, delivered to the government back in April, warned the government that “spread of Covid-19 is very difficult to control in a household-like residential setting, with highly vulnerable residents” and that the “major challenge” was “maintaining adequate staffing.”

An independent review of the Newmarch House outbreak, commissioned by the health department and led by Professor Gilbert and Adjunct Professor Alan Lilly, found that the response was bedevilled by problems: interagency confusion; a lack of clarity about the hierarchies among government health agencies; “severely depleted” staffing; significant shortcomings with infection prevention and control; and “compromised” implementation of Hospital in the Home because of “inadequate staffing and support,” resulting in a failure to “provide care equivalent to that of inpatient hospital care.” All of these issues have recurred during the Victorian outbreaks.

“The human imagination does not do very well with large numbers,” Robert Hass wrote in a poem grappling with the monumental death toll of the Korean war. Individual instances of suffering are often easier to grasp than the big picture, he suggests; suffering on a mass scale often overwhelms us.

And it’s true that the scale of the global tragedy unfolding in aged care nearly defies comprehension. In the United States, where nursing home residents make up less than 1 per cent of the population, the current tally of Covid-19 deaths in aged care is a harrowing 77,018 — 42 per cent of the country’s total Covid-19 deaths. In Britain, where collection of Covid-19 aged care data is patchy and deaths significantly underreported, in excess of 30,000 aged care deaths had been recorded as of 12 June, with two-thirds attributed to Covid-19 and the remaining 10,000 yet to be confirmed; that country’s aged care deaths are presently estimated to comprise around 40 per cent of all Covid-19 deaths.

In Australia, aged care residents now represent 74 per cent of all Covid-19 deaths, a vastly higher proportion than most other developed nations. When confronted with this statistic at the Senate select committee on Covid-19, Brendan Murphy dismissed the fact that Australian aged care deaths make such a high proportion of Australia’s overall death toll as “a completely meaningless statistic.”

But surely the question of how our aged care residents are faring compared with ordinary Australian citizens is the most meaningful comparison of all. The figures suggest that we have failed to protect our most vulnerable to the same degree that we have protected “ordinary” citizens. They suggest a great disparity between the safety of Australian aged care residents and the safety of other Australian citizens. They suggest that aged care residents’ rights to remain free of the virus, and to live in environments where infection control is optimal, are not being upheld. Ultimately, they suggest that aged care residents have been kept in environments with unacceptable levels of risk, with no recourse to protect themselves, and no capacity to exercise personal agency or choice.

If it’s true that human catastrophes are best understood through the particular, it’s there where I’ll end, with just one fleeting image of the crisis in Australian aged care: of a dying ninety-five-year-old woman named Milka Keleman, who was found with ants crawling out of an infected leg wound in the Covid-19-stricken Kalyna aged care home in Melbourne, where she was supposed to be receiving palliative care. According to care workers, residents at Kalyna went without medication for up to five days, were not given food or water for eighteen hours, and went without showers or being cleaned for days. At one point, there were only two staff to care for sixty-eight residents. Carers found dried faeces caked on the floor that a nurse reported being unable to clean even with detergent and scrubbing.

Twenty-two residents at the Kalyna aged care home have so far died of Covid-19, but Milka was not one of them. She died of other causes: one of the countless aged care residents who have suffered unacceptable collateral failures of care as Australia’s aged care system has broken down.

Milka’s death notice, published in the Age, reminds us that behind the unfathomable numbers are citizens who deserve better, people who love and are loved. It reads: “Passed away peacefully 13 August. Beloved mother of Rudy and Carolyn and grandmother of Karl. We will miss you but have so many memories to treasure. You will be forever in our hearts.”

As she lay dying in her bed with a leg wound swarming with ants, Milka was not a “consumer” enjoying “choice” about aged care. She was a vulnerable woman — a mother and grandmother — who deserved much better at the end of her life from a system that was supposed to care for her. •

Funding for this article from the Copyright Agency’s Cultural Fund is gratefully acknowledged.

This article was published in Inside Story on the 14th of September, 2020.

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Sarah Holland-Batt is a poet, editor and critic and a member of Queensland University of Technology’s Creative Writing faculty. Her most recent book, The Hazards (UQP, 2015), won the 2016 Prime Minister’s Literary Award for Poetry. She recently appeared as a witness at the Royal Commission into Aged Care Quality and Safety, where she testified about the abusive treatment and neglect her father has experienced in his aged care facility.

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