A society and a government is best judged by how it looks after its weakest and most vulnerable citizens.
The issues of aged and rest home care are complex and go beyond the matters highlighted in the Herald's helpful series of articles. The paper has done a good service exposing some of the issues around rest homes and particularly around aged care, and complete public audits of rest homes, only now made public, but written so that few can understand, and based on standards needing review.
The issues are far wider - systemic and political - and it is unsurprising that your poll showed that people when asked "Do you have concerns about the quality of rest homes in New Zealand", 83 per cent answered, "Yes".
It is the "system" that is at fault - and hardly ever the individuals who work within it - whether they be doctors, nurses, rest home carers, or the most exploited by our society, carers in private homes - spouses, sons and daughters. All who work within the system are bound by a fragmented, underfunded, ad hoc system.
My book, Peter and Me, When a Love Story Becomes a Carer's Anguish, is based on my records as the 24/7 carer of Peter my partner, with early onset dementia, (a young, not older person, but "forced" into an aged care system); on my professional experience as a registered psychologist, and my political experience as a long time activist in governance, elected to Wellington City Council, and a Health Board. It aims to give voice to isolated and exploited carers, especially partners and others, in private homes. I expose fundamental issues about humanity and failed systems.
As a result, I am calling for a Royal Commission of inquiry, and a bipartisan parliamentary response to produce viable solutions. Nothing less will produce the desired outcome - a comprehensive and viable and innovative system for the care of our most vulnerable and our chronically ill at home. Ad hoc tweaking, periodic throwing of money at a part of the system, will not achieve that.
The issues are not new but have come to the fore now more so because of the focus on demographic change and the baby boomer bulge - highlighted by the 2006 Census data of 420,000 carers in New Zealand, and the expected increase of people with dementia from 48,182 in 2011 to an expected 150,000 in 2050.
Some of the issues have been repeatedly investigated by a parliamentary select committee, the Human Rights Commission, and individual MPs with scant result and insufficient clout. There are so many stories of poor care - but with no national forum to air them.
The key person, to an adequate system of "ageing in place" (at home), is the carer ... and will become more so in private homes, based on preference, but more so because there are not and will not be appropriate places available in rest homes in the future, nor sufficient funding to meet the demands not of the patients or the carers but of the businesses that most rest homes have become. The result: poor care; and of increasingly complex illnesses of the older person - including greater numbers of those with a dementia.
But this is not simply an issue about the older person. It is an issue which relates to the young person with early onset dementia; the family carers of lifelong children and adults who are cared for at home, the carers of people at home with chronic and degenerative illnesses - especially but not only neurological illness and brain damage. It is also about those who are both patient and carer and who live alone, with minimal advocacy.
Issues for a Royal Commission would be predominantly societal, political and systemic, impacting on the clinical and the professional, and on fundamental human rights. They are too many for one person to resolve.
They demand the examination, creativity, intelligence and innovation of a nation. A Royal Commission would hear the stories and concerns in one national forum, would investigate quality systemic and practice innovations here and overseas, would identify key issues, and recommend legislative, regulatory and systemic change and innovation, for humane, societal, economic and financial reasons.
• Helene Ritchie is a registered psychologist, district health board member and the longest serving Wellington City councillor.