In the week that some of Ireland's 160,000 carers meet in Killarney for a respite break and annual conference, they have been told that the Government is shelving plans for a national strategy, reports ANNE LUCEY

FOR MANY OF the 500 family carers who gather this evening in Killarney for a conference and respite break, the next two days will be their only breather in a year of incessant demands. The break has been organised by the Caring for Carers Ireland organisation, and those carers who manage to get the back-up to attend for two days are the lucky ones of the estimated 161,000-strong invisible army who quietly save the country more than €2 billion a year by keeping their loved ones at home and in the community.

About 41,000, or a quarter, of Ireland’s carers are full-time family carers; others combine part-time work with caring for adults with mentally challenging conditions. Some are looking after elderly relatives or spouses with long-term illnesses, some are grandparents bringing up grandchildren full-time.

“This population is not static, and changes as people move in and out of the caring role. The majority of people will provide care at some point in their lives,” says Mary McMahon, chief executive of Caring for Carers Ireland.

This weekend’s annual conference is the 18th organised by the Ennis-based group, which has a national network and is part of a European one. Early press releases outlined plans to explore “the issues to be addressed in the forthcoming national carers’ strategy 2008-2016”, with particular emphasis on home support services.

But there is to be no national homecare strategy now. Three days ago, Minister for Social and Family Affairs Mary Hanafin pulled the rug out from under such hopes when she announced that the national strategy, long lobbied for and finally expected, would not be published by the Government, let alone implemented. Hanafin made public this “difficult decision” (due, she said, to economic pressures) on the same day that the country’s worst exchequer figures in decades were announced, timing that did not go down well with carers.

In all, 45,000 people receive carer’s allowance, either part-time or full-time. A means-tested, full-time allowance amounts to €220.50 a week for the 30,000 people who qualify.

Chaired by the Department of the Taoiseach and involving several other departments and agencies, including the Health Service Executive (HSE) and Fás, the strategy group looked at housing, income support, health care, transport, information, training, and other areas such as research and technology for homecare.

Now, with little prospect of co-ordinating the ad-hoc, localised approach there is to caring in this country, many of those arriving in Killarney today are wondering who cares about the carers.

THE PUTTING TOGETHERof a national strategy was "never just about money", insists Prof Joyce O'Connor, former president of the National College of Ireland and patron of Caring for Carers Ireland. Twenty years ago, O'Connor helped draw up a carers' rights charter in association with women's organisation Soroptimists International Ireland, founder of Caring for Carers Ireland.

Most of that carers’ charter lies unfulfilled. Its first principle is that carers have the right to be recognised for the central role they play “in community care and in creating a community of caring”. Its second asserts the right of carers to acknowledge and address their own needs for personal fulfilment. The right to finance is some way down the list.

“Caring in Ireland is ad hoc and voluntary – that is not to say it is not professional, but there is little back-up,” O’Connor says. Organisations emerge locally to answer local needs, in a spirit of “real patriotism”, because of gaps in services, but there is no one-stop shop for “the fragile network” of carers and their support groups. Because of this, carers can feel isolated in solo battles and can worry that if they complain too much they will be penalised.

The paths of carers will often criss-cross with those of organisations such as the Irish Wheelchair Association, the HSE, Enable Ireland, the Brothers of Charity, associations for the elderly, and groups focusing on Alzheimer’s or multiple sclerosis or on coping with children who are terminally ill.

“You have an army of implementers, but with no central strategy,” O’Connor says. “That’s why the strategy was so important. It identified gaps. It was to have provided a vision. It was also to be very practical.”

O’Connor is calling for a national carers’ day, to sit alongside other national days and to begin a debate about the who and the why of carers in this country.

“These people want to look after their loved ones,” she says. “But they want to do it well. And they can’t continue to care 24 hours a day, seven days a week. When they become ill, and many of them do, there is no back-up.”

Caring for Carers Ireland has called for more flexible services, for home help to be available seven days a week and for nurse-led one-stop shops for advice and help for carers in health centres.

It also wants health screening for full-time carers and a greater number of respite centres to give carers a break.

Among other issues that need to be explored is why some people in families, and not others, end up as carers. Most of the carers arriving in Co Kerry today will be women, while more than half of those attending Caring for Carers clinics are aged over 60 (in the last census in 2006, 11 per cent of carers were over 65). “From September they will have been looking forward to Killarney – they wouldn’t be going anywhere else in the year. Five hundred people get two days off the treadmill,” says Caring for Carers development officer Susan Hogan.

THE ORGANISATION PROVIDEStraining, back-up and local respite for carers and has about 90 local groups around the country. Its staff is made up of people who have cared for or are caring for others, because "empathy" is central to its philosophy, according to Hogan.

A former civil servant, Hogan became involved with non-governmental organisations while fighting for services for her daughter, now aged 36, who is autistic.

About one-third of carers in Ireland are looking after adult children, Hogan estimates.

“The most distressed carer is the one with an adult child,” she says. “Once the child becomes an adult it’s impossible to get a service. Half your life goes into fighting . People get burnt out.”

Most parents recognise that a 16- to 18-year-old has reached a crossroads and must learn to make his or her own decisions. But the decision is in someone else’s hands for parents of an adult dependant child. All help depends on where they live and what services are available there.

Carers have told Hogan that they lead demented lives and that what they want more than anything is someone who can understand that fact. Instead, the service or help they get is often like fitting a square peg into a round hole. Sometimes there is no exact diagnosis to classify a case, just spectrums, syndromes.

“The services should be individualised,” Hogan says, adding that counselling should be available to all carers. “We are expected to get on with it, and we are all getting old.”

Ironically, the ageing of a carer parallels the physical development of the child being looked after, with the result that there are 60- and 70-year-olds putting nappies on adult sons and daughters at nights.