Mr. John Dunne:

We endorse the view that primary health care must be placed at the heart of Ireland’s health service. I am president of the European Network of Carer Organisations and the way we talk about primary care in Ireland is extraordinarily limited in a European context. In Europe, the focus is not just on changing the institutional delivery of care; it is about remodelling the entire purpose of the care. Hospitals deal with acute situations, which are a problem to be solved. There is a commercial or industrial model around it. In the community, they talk widely in Europe about a goal-oriented approach to health care. The goal is not curing the condition; the goal is something that is negotiated with each individual in terms of the quality of life they want to achieve. I have never heard that mentioned in the debate on primary care in Ireland. We think that is the direction we should go and, to do that, we seek a community-based model of care, which recognises the importance of care in the home in our health system and gives statutory entitlement, among other things, to home care services, including respite.

An important consequence of our historic failures to address this is that Ireland operates a postcode lottery in the provision of community services. I assume the committee will examine this aspect. To make meaningful progress on this, we would focus initially on primary care networks. It might be realistic to say that across 90 primary care networks, there should be a consistent delivery of a bundle of services within three to five years, allowing another six to ten years to complete that roll-out at the level of 542 primary care teams. This is again a scenario where the best becomes the enemy of the good and timing is important. If this is not addressed as an urgent issue, it will be talked about forever and never happen. In that regard, we acknowledge that staff interests should be fully engaged in discussions about how this is to be achieved but one of the key principles the committee should be willing to endorse is that, in the final analysis, their interests must come second to the interests of patients. That has not always been the experience in the past.

Links between primary and secondary care remain as they were characterised in 2010 to the Joint Committee on Health and Children as "poor, resulting in disjointed and unco-ordinated care pathways, with less than optimal results for patients". Despite the HSE’s new practical guide for discharge and transfer from hospital, patients are routinely discharged from hospital without a documented care plan or the necessary supports. Carers' experience is usually a brief conversation in a hospital corridor and that is the limit of engagement on a care plan. Part of a vision going forward should be a transfer of care protocol that would prevent hospitals dumping patients on the community care system. We do not criticise the system for this. Managers are often give a few hours notice to put in place a complex home care package, which is not realistic. While we support the move to community health organisations and hospital groups, that creates a gap between two parts of the health system. A formal transfer of care protocol would be a way to bridge that gap.

Much of what is going at the minute takes a problem-oriented acute care model from the hospital to a community care setting. The hospital model is not particularly appropriate for treating chronic illnesses, which are usually characterised by comorbidities and long-term, indeterminate palliative care pathways. Palliative care came into existence under a structured pattern of development of major cancers. There are many other conditions about which people know what the ultimate outcome will be, but nobody can predict its path. That is a totally different challenge in the context of positive caring and palliative care, which is not recognised within the system. A shift to a goal-oriented approach could be key to that. The experts say it fits a wider collection of conditions, is more compatible with a team-based approach, which fits the primary care vision, and places a greater emphasis on physician-patient collaboration rather than that the patient being the recipient of treatment from the clinical side. The benefits of this approach include better balance between clinical and social care considerations and an improved approach to comorbidity and treatment of rare diseases. If they are combined, as a group, they are the third most common condition in the country. As individuals, people are isolated and left struggling as to how they fit within the system. This approach also opens up the option of examining new concepts of what is a chronic condition. For example, incontinence is more than three times as common as dementia or strokes and 1.5 times as common as diabetes and it is a major predictor of institutionalisation if it is not dealt with properly. It also leads to many secondary problems but it is not recognised as something other than being treated by throwing pads at patients and that is the end of it. This has to do with the way the care is framed.

Related to the shift to primary care is the question of shared responsibility. We welcome research findings in a poll carried about Amárach, which shows that people favour a model that shares responsibility for health care between State, the family and other actors. Currently, while that is the case nominally, in practice, all gaps in care fall back on to the families, even at the cost of carers' health and well-being. Family carers’ experience is their expertise and practical knowledge of the patient is not always taken into account by health professionals. Carers are often not involved in care planning. Care planning should be viewed as something to be negotiated between health professional, patient and carer.

The lack of clarity in sharing responsibility for health care between the State and family-community is only reinforced by the prevailing situation in which HSE acts as commissioner, provider and regulator in the home care sector. This represents a significant complicating factor in any move towards a self-directed support model of home care, which is about to begin piloting with a view to national roll-out in 2018. There is not realistic timeframe to achieve independent national oversight of home care. This situation is not entirely of the HSE’s making but it needs to be addressed as a matter of urgency on a statutory rather than administrative basis. It is only as part of clarifying formal responsibility for various parts of the health care system that it will be possible to decide, for example, whether it makes sense to have home care formally regulated by HIQA or overseen by an ombudsman-type model. For example, will we have a scenario where HIQA goes into people's homes and says they are not fit to provide care? What will be the consequence of that? We have witnessed the consequence in the formal system, where it was ignored for years before homes eventually shut down. We will not be able to shut down people's homes.

The required shift to primary care will increase the system's dependence on a hidden workforce of more than 200,000 family carers on which the health care system depends. This dependence will only increase in coming years. Today, one in 20 people in Ireland is a family carer but, by 2030, demographic changes will require one in five of us to undertake this role.

The economic case for safeguarding family care into the future is clear given that family carers provide 6.2 million hours of unpaid care each week, saving the State more than €4 billion each year in avoided health and social care costs. That is an extremely conservative calculation. Economics aside, it is socially and political significant that a majority of people want to play a significant role in the care of their loved ones when they fall ill and that they want a health system that will support them to do this.

Based on our current experience of supporting family carers, we recommend, as the committee frames its proposals for the future of the health system, that the following measures should be put in place to expand family caring in line with wider demographic changes: information campaign to promote earlier self-identification by family carers because otherwise they would not get on a proper trajectory for a sustainable care plan; integrated information, training and peer networking supports for family carers being consistently and readily available in each primary care network area within the next three years; carer assessment based on validated well-being scales and appropriate interventions to assist family carers who are being overwhelmed by their particular circumstances - CSAR and InterRAI which are tools used by the HSE are important and useful but they are resource allocation tools, which are not capable of fulfilling the carer need assessment role; availability of appropriate home care services along with person-centred and flexible respite options; and guaranteed access to appropriate respite options and provision for orderly planning and transition when a family carer becomes incapable of sustaining their caring role.

Arguably, one of the biggest blocks to people taking on a caring role is that if they are not able to keep it up, a situation could worsen. The State needs to recognise this and provide for it. There must also be proper facilities to support the health and well-being of family carers, including screening, respite cover for medical procedures and medical cards for full-time carers in receipt of the carer's allowance. The number of family carers who wait years for a medical procedure for themselves only to have to decline it when offered because they cannot put an alternative care arrangement in place is depressing. Additional measures to support people balancing a family care role and paid employment will also be important into the future. Such measures should be planned and implemented in the context of the ongoing renewal of the national carers' strategy on a rolling four-year basis. In time, this should be underpinned by a carers' Act similar to that enacted in Scotland this year.

Family Carers Ireland supports placing primary care at the heart of Ireland's health service with a view to moving towards a goal-oriented approach to treating progressive life-limiting conditions in the community. To underpin this, we are calling for the establishment of a community-based model of care which recognises the importance to our health system of care in the home and gives statutory entitlement to home care services, including respite. Any long-term strategy must address the question of restructuring and redistribution of resources and the reorientation of these to support care in the home and community. There is not much disagreement about what needs to happen. It is just that nothing is happening. It is critical that this committee's final report contributes to framing an analysis and strategy to this challenge, not least because Ireland's health care policy is confronted by a growing legitimisation crisis, which is defined as a decline in confidence in the administration functions, institutions and leadership of the system. We believe this is probably the biggest challenge facing the health care system and the work of this committee.