Ms Rosaleen Doonan:

I thank the committee for inviting us to outline and discuss North-South co-operation in the area of family carers. I would also like to acknowledge the work of Deputies Joe McHugh and Tony McLoughlin, who have a demonstrated a keen interest in supporting family carers, and I appreciate all the work they have done so far.
This cross-Border consortium came together because we recognised that co-operation in this area makes sense as the increasing challenges facing family carers on both parts of the island are similar. There is no doubt that if we work together, benefits will accrue from pooling expertise, resources and exchanging good practice. This will achieve a better life for family carers on the island of Ireland.
The members of the consortium who are not here today are: Ms Catherine Magowan, Western Trust; Ms Noreen Kettyles, MeUnltd Northern Ireland; Mr. Shane Martin, a psychologist; and Mr. Frank Morrison from the Health Service Executive. We have received guidance and training from Ms Ruth Taillon of the Centre for Cross Border Studies.
A family carer is someone who provides an ongoing significant level of care to a person who is in need of that care in the home due to illness or disability or frailty. A family carer is not identified by gender, colour, creed or nationality, any more than those facing similar caring situations and feelings, irrespective of where they live.
It can be said that there are four kinds of people in the world: those who have been carers; those who will be carers; those who currently are carers; those who need to be cared-for. It is not something we often consider but it is a fact that, one way or another, “caring” will come into all of our lives at some stage and, as a society, we need to grasp that reality and plan around it.
People in both jurisdictions on this island are living longer and it is inevitable that, as this trend continues, the number of family carers will continue to grow, resulting in increased demand for relevant and timely support mechanisms to be in place to provide support to those who have chosen to care for a loved one. "Chosen" is not a very good word because few people choose to be carers. It is usually thrust upon them and is not a job that somebody applies for. There are 396,864 family carers registered on the island of Ireland giving 12,664,644 hours of unpaid care per week. In the Republic of Ireland the 2011 census recorded 187,000 family carers, of which 4,228 were under the age of 15 years, which is startling, yet in Northern Ireland the 2010 census returned a figure of 214,000. There is a clear need to research this glaring difference. Not only do family carers make a profound difference to the health, well-being and quality of life of those for whom they care, but they also make a huge and unacknowledged contribution to the economy. Family carers in the Republic of Ireland contribute €77 million per week, providing 900,000 hours of care daily to the ill, frail and people with disabilities. This is equivalent to one third of the total annual cost of the Health Service Executive, HSE, and is five times what family carers cost the Department of Social Protection in income support. Full-time family carers contribute on average €72,500 a year. Can committee members imagine what would happen if, like the air traffic controllers in France recently, all these people decided to down tools and go on strike, or bring all the people they care for to our community health centres and hospitals? The health service would collapse and thousands would die but we all know this will never happen because no matter what stresses or strains carers have to endure, they will never forsake their jobs. Carers are the backbone of the provision of care in the home and community. We all talk about care in the community but what is care in the community? There is no community. It is individual families and neighbours taking care of people. We have to ask where is this elusive community.
The significant demographic changes to the Irish population structure, expected to occur over the next few years, will have major implications for publicly provided supports and services and, coupled with the reforms in both the structure and delivery model of our health system, this will have profound implications for family carers. It is expected that Ireland’s ageing population and medical advances in treating disability and chronic illness will result in more people of all ages with longer-term and complex care needs who will, according to Government, be cared for in the community. We all know that this in reality means cared for at home by family members. The difference between now and 20 years ago is that people who would be cared for at home would not have a high level of medical intervention or needs. They might have been frail or have had a mild to moderate disability, but they did not have the complex needs that people can now care for at home. I am not saying they cannot be cared for at home but they need support. There is a change and we need to respond to that.
We acknowledge there are positive and rewarding aspects to caring but there are also huge challenges and demands. Research shows that a high percentage of carers experience physical ill health and emotional or psychological problems as a result of long-term caring. This is a fact no matter where in the world one is working. I acknowledge the Government's publication in 2012 of the national carers strategy, Recognised, Supported, Empowered, whose vision statement is:

Carers will be recognised and respected as key care partners. They will be supported to maintain their own health and well-being and to care with confidence. They will be empowered to participate as fully as possible in economic and social life.

We welcome this strategy and its vision, and believe if the four goals and 42 objectives contained therein were delivered, this would go a long way to bringing family carers to centre stage in the delivery of care in the home. Unfortunately, nearly two years later, with less than two years of the strategy to go, very few of the actions have been delivered. In fact it is sad to think how little of it has been delivered.
I note that in February the committee met high-ranking civil servants from the Department of Health who outlined areas of co-operation they were engaged with. As is common when the Department of Health and the HSE speak about health, family carers were never mentioned, yet it is the policy of both Governments to progress care in the community, but they ignore the most important resource to deliver this - family carers. They are ignored mainly because no Department has a remit for family carers. The Department of Health has a remit to provide services to people who are ill but not for the people who are caring for them outside the paid employees of the Department and HSE. The Department of Social Protection views family carers as recipients of benefits and not as contributors to the economy when the opposite is the case. Family carers are the only people who have to work for their benefits.
Family carers do not have a recognised status within health provision and therefore do not receive the supports or services they need.

This is particularly evident when one looks at how Co-operation and Working Together, CAWT, and other INTERREG funding is dispersed within the health sector. Provision is focused on patients and the agencies taking care of them, but little thought goes into the needs of voluntary carers. Some weeks ago, new funding of €50 million was announced under the CAWT initiative. However, while senior health managers in my area of Donegal and Sligo have been briefed on that funding, no representatives of carers were invited to attend the briefing. Once again, carers are on the outside. In fact, carers in the South do not even have a right to an assessment of their needs, even when they are caring for people with high levels of dependency.

One of the most remarkable and unusual aspects of family caring in Ireland is that despite being a small island, there is a vast difference in how supports are provided depending on which side of the Border one lives. There is a completely different model for delivering supports in each jurisdiction. In Northern Ireland, the model is services-based with low supports, whereas in the Republic it is based around medium supports and little service provision. I do not know which, if either, of these models is best, but it is striking that they are so different.

I will now hand over to my colleague, Mr. Caughey, who has travelled all the way from Belfast this morning.