OPINION/Breda O'BrienWe are very focused on hospitals in Ireland. That's not surprising, given a daily diet of stories of overflowing Accident & Emergency departments, long waiting lists for treatments, and stark inequalities in the system. You would think that any group who help on a daily basis to keep people out of hospital and other expensive residential care facilities would be treated as saviours by the State.
You would be wrong. Such a group exists. They are called carers. While successive governments have made concessions to them as a group, no government has given them the recognition and practical support they deserve. For years, they have been looking for a carer's allowance which would be paid automatically to anyone who is a full-time or part-time carer. You can see the Department of Finance screaming "black hole!" at the very idea.
If the new reform strategy is implemented, the Department of Health is supposed to concentrate on policy and strategy.
Maybe if justice and compassion do not motivate them on support for carers, economics will. We are becoming older as a nation; not as rapidly as our European neighbours, but it is happening nonetheless. Women have been encouraged out of the home and into the workforce. We have had a great deal of controversy about childcare, but elder care, and the care of people with disabilities, is as big an issue, and one which is even more difficult to resolve.
At the moment, women, and it is primarily women, shoulder caring for elderly relatives, but unless moves are made to support them it cannot be taken for granted that this will continue.
The kind of black hole which will open up to swallow resources at that stage when the State becomes primarily responsible for the care of elderly and dependent people will make the cost of caring for carers look like peanuts.
People do not wake up one morning and decide brightly that they are going to become carers. It tends to happen incrementally, and according to a report on research published in the current edition of Studies, without much discussion within families.
The research, carried out by Ms Emer Begley and Dr Suzanne Carroll, both of St James's Hospital, was with a small sample of women who were interviewed at length.
The report contains a couple of sentences which should cause people to pause.
The authors report that "it became evident during discussions that some of the women found the interview process quite difficult. For the first time they were encouraged to talk about their experiences without feeling that they were burdening the listener".
The sense of isolation reflected in this response is palpable. Most people who find themselves as the primary carer for another have no idea where to turn to. The Carers' Association receives 18,000 calls a year, and the Citizens Information Centres another 18,000 calls from carers. Even allowing for overlap in those two figures, that represents a sizeable number of people who are unsure about their entitlements, and who often have difficulty accessing information.
The Carers' Association is hosting an international conference next Tuesday in City West Hotel conference centre in Dublin. Among their speakers will be Viveca Hagmark, who is going to talk about the Finnish model of home care. In Finland, when you assume responsibility for caring, you can refer yourself or be referred by a GP or public health nurse to a home-care team, which consists of representatives from the equivalent of what are currently our health boards, and from social welfare and non-governmental organisations.
A needs assessment follows, and a programme of care is planned to meet those needs, which is monitored regularly, including the provision of an ombudsman.
This is about as far from the situation in Ireland as it is possible to imagine. The kind of services you can access as a carer in Ireland depends on where you live. As one person involved with carers told me morosely, some health board areas have ample stocks of the kind of aids needed by the elderly, such as handgrips, walking frames, commodes and specially adapted chairs, and give them out generously. Other areas guard them as if they were weapons of mass destruction. Similarly, services for disability depend on geographical location.
The Brennan and Prospectus reports are strong on the standardisation of the quality of services to the consumer. Part of the comprehensive package of reforms suggested by Prospectus is the setting up of a Primary, Community and Continuing Care Directorate. In the public mind, primary care is primarily identified with GPs, but it covers a wide range of services, including public health nurses, home helps, physiotherapists and community pharmacists. Properly resourced and organised primary care can help us all, and is particularly relevant to carers.
When will there be a better time to look at implementing a needs-based service for carers and those they care for? The big question is, will the Department of Finance be able to stop obsessing about black holes long enough to see the people who are already falling into them, due to lack of assistance?
If carers took those whom they care for to an A&E and dumped them there, the State would be forced to look after them. Those caring for them in that setting would be subject to all sorts of regulation such as working time limitations. Since carers are explicitly excluded from such regulation, they have the privilege of working 24 hours a day, lifting, changing, and caring for people who would otherwise be costing the State a fortune.
Politicians will continue to evade providing proper care for carers while they feel there is no great public demand for it. If we are inclined to believe that carers are somebody else's problem, perhaps we should reflect on this.
Most of us will grow old. Some of us will be frail and needy in old age. Many of us would hope that family members would be willing and able to care for us. When we skim over the plight of carers, perhaps we should remember a rather grim application of the Lotto slogan - it could be you.
For further information about the Carers' Association international conference, telephone 1 800 240724 or 0506 22933.