EVEN READING a guide to finding a nursing home must be a difficult and traumatic step. Nursing Home Care, It’s Your Choice is compiled by Nursing Homes Ireland (NHI), the representative body for the private nursing-home sector. “Home as you know it will be very different,” it tells the prospective nursing-home resident.

For people who have come to the painful realisation that they can no longer do everyday, essential tasks – get dressed in the morning, wash themselves, cook or take necessary medication – this could be the first source of information, and a source of optimism. “Living in a nursing home opens up a new world of opportunity,” it says. “Your home life will embrace a new community of people with shared histories, perhaps familiar faces from your local community and an opportunity to meet new people, round the clock medical care and support, safety and security.”

Current figures indicate 5 per cent of people over 65 will face the prospect of living in a nursing home, but this figure is set to grow, and planning for such an eventuality is becoming more complicated and uncertain.

The Nursing Home Support Scheme, or “Fair Deal”, was introduced in 2009. Since then, it has run out of money, been closed, re-funded, reopened and changed, and now it is under review.

The HSE, in this year’s service plan, said it would close up to 892 public beds by the end of the year, on top of the 758 closed last year. In April, the Department of Health announced it was reducing the planned increase in contracted private beds from 1,270 to 640 (a cut of 630 projected private beds) from the Fair Deal scheme. At the same time, the Minister for Health James Reilly continues to talk about the need to “negotiate best value” with private operators – this, according to NHI and trade unions representing public home workers, is a euphemism for driving down costs.

Tadhg Daly, chief executive of NHI, says such pressure could threaten the viability of private operators, which are already charging up to 50 per cent less for each bed than the public sector. It also raises questions about their capacity to meet long-term demand.

It’s not an environment in which the most vulnerable 5 per cent of an ageing demographic should have to plan.

The statistics are well established: the number of people aged 66 and older will increase from 467,926 in 2006 to 792,067 by 2021. The number with severe disabilities is projected to increase from 94,400 to 147,677, and demand for long-term care will reach almost 36,000 places by 2021, up from about 28,000 now.

Since 2003, the number of private and voluntary nursing homes in the State has increased from 408 (14,946 beds) to 445 (21,500 beds) today. There are 22,815 people on Fair Deal packages and 10,018 on homecare packages. With 115 public nursing homes in the State, private and voluntary nursing homes account for more than 75 per cent of all long term care beds in the country.

All nursing homes, whether public, private or voluntary, are registered with and inspected by the Health Information and Quality Authority (Hiqa).

The clear trend is a growth in private sector care, where beds cost the national purse an average of €865 a week, compared with €1,245 in public units. The difference is principally due to labour costs, says NHI, as the private sector can avoid premium shift rates and use a higher proportion of care assistants and fewer nursing staff.

Anyone – whether they have private health insurance or not – in need of long-term care is eligible to apply for Fair Deal funding, and to choose either a public or a private bed.

Once their needs and means are assessed, the cost to them will be 80 per cent of their disposable income, whether they choose a public or private bed.

The Fair Deal provides that the older person must contribute 80 per cent of their income to the cost of their care, with the State funding the balance. Its “fundamental purpose”, said then minister for health Mary Harney, was “to make long-term nursing home care accessible, affordable and anxiety-free”.

This demand-led scheme, however, is budget-capped, which led to anxiety among applicants last year, as it ran out of money. The Department of Health underestimated how much money was needed for the scheme; frail citizens had to go on waiting lists, while waiting for other frail citizens to die before they could get a bed.

The scheme had to close to new applicants for a few weeks and reopened in June last year amid accusations that the previous government had left “a hell of a mess” for Minister James O’Reilly and warnings of continuing “serious financial difficulties” for the scheme.

According to the HSE, all applications are now being processed within four weeks. However “huge levels of uncertainty about the scheme” remain, according to Daly, compounded by an absence of any national strategy on the long-term care needs of an ageing population.

Gerry Scully, senior information officer with Age Action Ireland, says “major problems” remain with the scheme. “It’s quite a complicated process to get a Fair Deal bed,” he says. Most people do not know where to start and are “very worried” about cost. “There is also an issue of the HSE or hospital choosing the home for a person, and there have been problems with people being placed in homes far away from their families.”

He and Daly say that in the past applicants’ funding was back-dated to when they applied. Now it is paid from the date of approval, leaving the older person either waiting in an acute bed, vulnerable at home, or having to pay for up to four weeks’ care. In some cases, nursing homes won’t take a new patient until funding comes through.“It seems obvious the State wants to fund nursing-home care but not provide it,” says Scully.

He declines to describe this as a good or bad thing, but warns that it could have implications for quality of care if it is not accompanied by safeguards, such as whistleblowers’ legislation and regulations on staff-resident ratios.

Although Hiqa inspects public and private homes, Scully raises concerns about the confidence of low-paid, non-unionised workers’ in the private sector to report substandard care. “I am worried about the next four to five years. There doesn’t seem to be any strategy, apart from driving down costs and creeping privatisation.”

There is not enough attention, he says, paid to keeping older people out of nursing homes and investing in quality community supports.

Patricia Conboy, director of the Older and Bolder alliance of age-sector organisations, has called for an “audit” of community-based services, “so we can identify the deficits [and] plan effectively for the future”.

The Department’s review of the Fair Deal is expected to be completed early next year. Among the issues it will look at are its “on-going sustainability”, the cost of long-term care in public and private nursing homes, the current methods of negotiating prices, and the balance between residential and community care.

‘The hospital gave a list of nursing homes. One of them was Leas Cross’

IN 2004, Mary Fletcher-Smith and her siblings faced the same decisions that come to many. Her father, aged 80 and living alone, had flu, which led to pneumonia. His health deteriorated, and he was subsequently diagnosed with vascular dementia in Beaumont Hospital. It gave the family a list of nursing homes to consider.

“He was a great golfer. Just six months previously he had played for the captain’s prize,” Fletcher-Smith recalls. Home care to help him resume living independently wasn’t offered.

With Fletcher-Smith caring for her late husband, who had multiple sclerosis, and other family members scattered around Ireland and the world, they worked their way through the list. One option was Leas Cross.

Fletcher-Smith recalls that in comparison with others that had “bars on the windows or looked quite Dickensian”, the Swords home, later charged with serious patient neglect, seemed bright and airy.

But just months after her father moved in, Fletcher-Smith felt that things weren’t right. “I felt he had deteriorated. I went in at meal times to make sure he was eating.”

Other things were wrong, too. “All of his clothes disappeared, every stitch,” she says. “My father was the managing director of a retail chain in town and was always impeccably dressed. They said to me, ‘sure you can get more’.”

Another time she rang to see how he was and they said: “‘He’s fine, he’s fine,’ but I just couldn’t rest so I went over and found him in bed with all his clothes on and frozen with the cold.”

Another time, she found his toenail cut so poorly that his foot had become infected. Nursing staff hadn’t noticed.

One night, having returned from spending the day with her father, Fletcher-Smith turned on the TV to see an RTÉ Prime Time Investigates programme exposing abuses at Leas Cross.

“I went straight over there and it was havoc,” she recalls. “I just spent the following days beside daddy.”

Her father died in Leas Cross a week later. She says there was no palliative care. She had to plead with doctors to give her father morphine. “He died, but not peacefully,” she says.

The cost for her father’s 14-month stay at Leas Cross was €54,000.

Fletcher-Smith has since gone on to work with the Third Age National Advocacy Programme, recruiting and training people to act as advocates for older people in residential units, supporting them to voice their concerns.

“My experience at Leas Cross was so abysmal, I had to make sure it wouldn’t happen again,” she says. “To be crying on the phone to a doctor saying ‘will you please give my father morphine, he’s in agony’. I shouldn’t have had to do that.”

For those choosing a nursing home, she says to look at the patient-staff ratio. “I would ask questions like, if my father got sick, how would you support him? What sort of qualified people have you got? I would also look at food and nutrition. Is there a choice, and is it home cooked? If I don’t like something, can I have something else?”

She says to ask about activities, too. Fletcher-Smith visited one nursing home recently where timetabled events included a trip to the Titanic exhibition in Belfast, and to see Chicago or Phantom of the Opera. “It has to be a home away from home.”

myhomefromhome.ieis operated by the Third Age National Advocacy Programme, to provide information on nursing homes. It includes links to Health Information Quality Authority inspection reports JOANNE HUNT

‘Creaky physiques we can greet with humour. There are other questions that need answers’

IN THE LASTtwo years or so I've been to four 80th birthday parties, and all of the celebrators were in high spirits and good health. I know two women in their 90s, both active and looking well.

A few months ago, I was at a seminar on retirement age, where an actuary pointed out that workers who reached 65 in 2007 could expect to live another two decades, with women retaining their typical life-expectancy bonus of two years on men.

This depends on the usual factors, she said: genes, lifestyle, accidents, plain old good luck. But in general, we are living longer than our parents could ever have anticipated. Isn’t it very heartening news for those of us who are only at the 70 mark, give or take a few years? Well, yes, but . . .

Longevity inevitably means decline. The minor problems – cataracts, dentures, hearing aids, faulty hips and knees – are not a worry. Creaky physiques we can greet with humour. One friend describes his social gatherings as organ recitals: my heart, your gall bladder, his liver. Forgetfulness is a nuisance but not always a catastrophe.

The great unspoken question is: “What if?” What if the time comes when we can’t go on just as we are? We’re not the only ones avoiding the question; our middle-aged children don’t want to raise it either. The obvious fear is failed health, but there are other developments that dictate new choices. Family circumstances change, housing needs change, finances change.

The recent closure of community nursing homes finally precipitated the first conversation I’ve had with my peers on the “what if” question. I think we are a reasonably well-informed group, but it rapidly became clear that none of us knew enough about the options to discuss them.

What's the difference between public and private nursing homes? Who qualifies for entry? Is that Pay When You're Gone scheme still operating, the one Mary Harney brought in? What if you didn't need a nursing home but did need some more secure sort of accommodation, say in a sheltered housing unit? Are there other options? Where can we get the information we don't want to ask about but do want to know? MARY MAHER

Mary Maher is a former Irish Times journalist

Home help experience: ‘I don’t want to leave my friends and neighbours’

I want to be living at home, Im happy living at home, says Bridget* (84) from rural Kildare. In 2006, while living with her sister-in-law, she caught a bad cold that led to pneumonia. “I knew going to bed that night I was very chesty. At around two o’clock, I thought if I can stick it out until five . . . I stayed looking at the clock but I just got frightened then.”

She used her panic button to get help, and was admitted to hospital, and then a nursing home to recuperate. While she was away, her sister-in-law moved out. “I think she might have thought I’d need a lot of care and she wouldn’t be able for it. She was older than me.”

Bridget is very happy with her HSE-paid home help, who come Monday to Friday, for about two hours a day. “The girl in the evening, she puts on the lights and washes the delph. The other girl in the morning might wash my back or my feet or wash my hair.”

Determined to live at home, Bridget is right in step with the Minister for Health James Reilly’s aim of empowering older people. On weekends and bank holidays, however, the HSE won’t pay. “It’s five days a week so they’re saying, you can’t manage Monday to Friday but you can manage Saturday and Sunday?”

Bridget has spina bifida, and has used crutches all her life. More recently, she needs to use a wheelchair. She pays for private weekend help from her pension.

Her home has been burgled twice. The first time she was out. The second time, she had a narrow escape. “I was sitting by the fire and I saw a face at the window. I was sure it was my nephew and I shouted that I’d let him in. When I went out, it was a stranger.”

She told him her nephew was due, and the burglar fled. “I just don’t want to leave my friends and neighbours, even though it’s a very isolated place where I live,” she says.

She doesn’t understand why the HSE won’t support her at weekends, helping her to remain out of nursing home care that would cost the State more.

*Names and locations have been changed

Nursing homes places and home care: Who’s entitled to what?

Anyone, of any age, whether they have private health insurance or not, is entitled to apply for a Fair Deal funded bed.

The first step is to fill in an application form (NHSS1), available from the HSE on 1850-241850, or the HSE website ( hse.ie). The form seeks information on needs and financial means.

A care-needs assessment is then carried out by a healthcare professional, such as a nurse, doctor or social worker. A financial assessment is next, looking at income and assets. The person’s contribution will be 80 per cent of disposable income, and five per cent of the value of any asset, per year, for a maximum of three years (this latter part can be paid after death out of the estate). The State pays the balance.

The HSE will provide a list of approved nursing homes in the area and the applicant is free to choose any, as long as it caters to the needs of the older person and it has a place.

Home-care packages broadly provide home-help, a public nurse, and physio and occupational therapies tailored to the person’s needs, in their home. They can be bought privately or accessed through the HSE. There is neither a statutory right to a home package nor national guidelines on how to qualify for the scheme.

Some HSE areas assess income on the same basis as medical cards, but qualifying criteria for home care vary between local authorities.

The HSE is not legally obliged to provide home-helps, but it does provide the service, prioritising people with Hepatitis C who have Health Amendment Act cards, older people, families with small children where the mother is dead or seriously ill, and people with disabilities.

Further information

HSE hse.ie

Department of Health dohc.ie/issues/fair_deal/

Health Information and Quality Authority hiqa.ie

Nursing Homes Ireland nhi.ie