Mr. Mervyn Taylor:

I thank the committee for this opportunity to appear before it. The mission of Sage Advocacy is to promote, protect and defend the rights and dignity of vulnerable adults, older people and healthcare patients. We support and advocate for people independently of family, service provider or systems interests. We have made a detailed submission to the committee, so in these opening remarks I want to focus on where we go from here. We see little value in shroud waving and comparing deaths in one nursing home with another. As Mother Jones famously stated, "Pray for the dead and fight like hell for the living."

I will first give some sense of what it has been like from the perspectives of residents, relatives and staff. "You have no idea how awful it is – it’s horrific." These were the words of a member of staff in a nursing home that experienced a serious outbreak and many deaths. The impact of an outbreak has been frightening for many residents, and for those with dementia, the arrival of people in full PPE was terrifying. Serious shortages of staff meant that there was little, if any, time to provide support to residents in facilities where many died. For families with relatives who were extremely ill or dying, the inability to visit or even to talk to their loved one by phone was a source of considerable distress and frustration.

Approximately 20% of older people need some form of support and care, of which less than 5% will live in a nursing home at any one time. Nursing home care is not long-term care. The average length of stay is just over two years. In 2016, Sage Advocacy, along with other NGOs, organised a forum on long-term care for older people.

The unanimity of opinion at that forum was summed up in a question. Why, despite decades of policy reports and recommendations to Government, is there still a systemic bias towards care in congregated settings and no formal legislative basis for support and care in the community? The report of the forum spoke of the need to develop a vision for long-term support and care which is as compelling as that of the hospice movement at its best.

At the core of this issue is the fragmented nature of social care for older people. This is not just about what did or did not happen in March and April. Home support services, such as they are, are not provided on a statutory basis or regulated and have no clear vision, other than the level of home care packages that can be provided in any one year.

Care in nursing homes is provided on a statutory basis and is regulated, but has an overly complex and ultimately dangerous architecture. The National Treatment Purchase Fund, NTPF, buys care from private providers without proper consideration of the range of needs. The HSE administers the scheme but - this is critical - the contract is between the older person and the nursing home. HIQA sets the standards, but has no role in setting the price, and inspects, but has no powers to investigate complaints. Crucially, as Sage Advocacy’s February report on medical care in nursing homes pointed out, there is no clear framework for the provision of medical care to the most vulnerable of our older people, nor are there ratios set for the level of suitably skilled nursing staff.

Over recent decades the State’s approach to the residential care of older adults has been one of retreat in favour of private providers, with the remaining public facilities providing care mainly to the more frail with complex care needs, sometimes in famine era buildings. Elements within the HSE, working with NGOs, put forward proposals for a change to a teaghleach or smaller-scale household model, but they were not supported. The State, having outsourced the service, practised social distancing while the public, notwithstanding the good service provided by many facilities, is increasingly questioning the morality of private investment in human vulnerability. Simply stated, we are talking of vulnerable people in a vulnerable sector.

Our detailed recommendations are set out in our submission. The five I would highlight are: an integrated system of long-term support and care spanning all care situations with a single source of funding; the integration of private nursing homes into the wider framework of public health and social care; clear guidelines on the skills and level of nursing staff and medical care required in congregated care settings related to the needs of residents; a wider range of service and ownership models for homecare and care in congregated settings; and legislation for adult safeguarding and the protection of liberty in places of care and legislative recognition for independent advocacy.

The Covid-19 public health emergency has shown some of the great strengths of Irish society. It has also shown weaknesses. We have a two-tier healthcare system and a two-tier siloed approach to the long-term care and support of older people which is biased towards congregated settings. We owe it to ourselves, and to those who have sacrificed so much, to do better. Let us shed a tier and set about building Sláintecare, a single-tier national health service with an integrated system of social care focused on home and a much wider range of options between home and nursing homes. I thank the Chairman.