Beyond caring

 

HSE cutbacks are putting community health services under strain, causing widespread anguish, not just for the most vulnerable citizens of the State but also for those caring for them at home, writes MARESE McDONAGH

INCONTINENCE PADS are being rationed, there are plans to put home helps on a stopwatch when showering elderly clients, and parents are fretting because some public health nurses are too stretched to carry out infant developmental checks.

Ward closures may grab the headlines, but advocacy groups are on red alert as HSE cutbacks put community health services under strain, causing widespread anguish, not just for the most vulnerable citizens of the State but for those engaged in the thankless task of caring for them at home.

Enda Egan of the Carers’ Association is not easily shocked, but he was appalled recently by the indignity inflicted on some of his members, in the name of saving the HSE a few euro.

Egan was horrified to learn that some carers who dared to ask for extra incontinence wear to make their loved ones more comfortable, were asked to bring in used “nappies” to be weighed.

A small number of so-called “incontinence managers” put carers through this trauma in a crude attempt to measure the amount of fluid passed, in order to calculate if they really did need more than the permitted quota of pads, he says.

“We have come across four cases in two months,” says the Carers’ Association chief executive, who has long waged a campaign to highlight the injustice of having incontinence wear subjected to the “luxury” 21 per cent VAT rate.

Egan believes the HSE is snipping away at community health services because, despite the lip service paid to the importance of caring for our elderly and infirm in the community, “it is an easy one to cut”.

His association estimates there are 160,000 carers in the State, most of them family members who provide three million hours of care per week. There are 40,000 full-time carers, slightly more than the 39,000 nurses in the Irish hospital system.

“Of course, you can’t spot them as easily,” says Egan, who believes the value of the 24-hour care provided by these people is incalculable – and worth a lot more than the maximum means-tested €212.50 weekly payment, which only a fraction of the carers get.

A study commissioned for the Jack and Jill Foundation earlier this year underlines that point. The independent Trinity College report, entitled There is No Place like Home, found that it is nine times more expensive to provide acute hospital care for children with severe intellectual and physical disabilities than to have them cared for at home.

The foundation supports 320 families who care for children at home. But just 19 per cent of its annual €3 million budget comes from the State – and recently it suffered a 6.5 per cent “value for money” cut. Last week, the Minister for Health allocated an extra nurse to the foundation.

But spokeswoman Carmel Doyle points out that recycled mobile phones are still its main source of income. While they have been a spectacularly successful source of revenue, she wonders how long vulnerable children, who in many cases cannot walk, talk, see or eat independently, will be able to depend on the nation’s cast-off phones in order to survive.

For financial reasons, the foundation can only support children up to the age of four but, according to Doyle, more revenue is urgently needed so that it can extend its remit to children aged up to six. “We don’t want to leave them high and dry at four.”

Sinéad Moran, paediatric co-ordinator with the Jack and Jill Foundation, said that 35 children on its books have reached or are about to reach the four-year-old threshold and negotiations are under way with a view to getting the HSE to replace the nursing hours these families are about to lose.

“Many just won’t cope if they don’t get this nursing care,” she says. Moran says there is also a huge issue now for parents of severely disabled children, who find that funding for specialist equipment is drying up.

“These children need special equipment, buggies which support their trunks, special chairs for feeding, walking frames which allow them to stand for maybe 20 minutes a day. They now have to wait months for these things and it is putting a lot of strain on families.”

The foundation provides a nurse two nights a week to the parents of Tommy Simon from Knockarush, Boyle, Co Roscommon, a severely disabled boy who requires round-the-clock care.

“They have been sent to us from heaven,” says Tommy’s father, Frank, who explains that without help at night he and his wife, Niamh, would never get any sleep.

“Our problem is that Tommy will be four in a few weeks’ time, so that is a big worry,” adds Frank. Other parents are worried too.

The Irish Nurses Midwives Organisation (INMO) has warned that the roll-out of the cervical cancer vaccine programme combined with staff shortages means that the ongoing problem of delayed developmental checks for babies will continue.

Labour’s Health spokeswoman, Jan O’Sullivan, says that in many parts of the State, checks which should be done at nine months and which are crucial for picking up hearing difficulties, are being delayed.

“We have also had reports that hearing and eyesight tests, which are usually done on junior infants, have not been done in some schools this year,” she says.

The abrupt closure of respite centres such as Bawnmore in Limerick is causing anguish for carers, many the elderly parents of intellectually disabled adults, who will now never get a break even when ill, she points out.

The closure of the Brothers of Charity facility, which catered for 63 families, has been described by the chaplain, Fr Joe Young, as “the greatest injustice I have experienced in 34 years as a priest”.

The HSE says no decision has been made that has an impact on developmental checks or routine vaccinations in order to facilitate the HPV programme, but some parents say there have already been significant delays.

The HSE acknowledges that last winter’s swine flu campaign, “the largest public health immunisation campaign ever undertaken in Ireland”, led to deferrals of some routine vaccinations and developmental checks. But it says catch-up campaigns have been in place since April.

Claire O’Connor, from Harold’s Cross in Dublin, says her son’s nine-month check is now a month and a half overdue and she is worried about his hearing because he has been getting repeated ear infections.

“I know I can bring him to the GP and I have done that,” she says. “But apart from the fact that it’s €55 every time and I am on unpaid leave from my job, GPs don’t specialise in paediatric care, and I was hoping to have him seen by someone with specialist training who would pick up any problems from a developmental point of view.”

The first time she rang her local health clinic she was told there was a huge backlog and to call back in a month if she was not called.

“I did that but the next time they did not even seem to have me on record and they were telling me that the check can be done any time from nine to 12 months,” she says.

Phil Ní Sheaghdha, director of industrial relations with the INMO, says that if the moratorium is not lifted, public health nurses, still playing catch up after last winter’s swine flu vaccination programme, will be so busy with the HPV vaccine that developmental checks will be further delayed, with potentially damaging consequences.

She stresses that PHNs doing these checks in the home also pick up on other serious issues such as post-natal depression and problems with breastfeeding.

Ní Sheaghdha says there could also be child protection implications if nurses are too stretched to visit vulnerable families. “Sometimes parents don’t want a social worker to call maybe because they are afraid of losing their children, but they don’t have a problem with a public health nurse,” she explains.

Ní Sheaghdha says staff shortages caused by the moratorium on recruitment means public health nurses are not calling to see vulnerable elderly people as often as they would like. “And we have been told that there is a waiting list for palliative care in Kildare. You cannot wait when you are dying,” she says.

Age Action Ireland recently highlighted proposed cuts to home help services, which many working in the sector say could actually put vulnerable people at risk.

The HSE draft guidelines proposed that home helps allocate just 10 minutes to getting older people up and dressed in the mornings, while 15 minutes was the recommended allotted time for helping someone shower.

Ten minutes should be spent getting breakfast and the home helps should spend their visit looking after the client’s “personal care” rather than doing housework or other tasks such as popping out for a litre of milk.

Public health nurses, who are themselves spending less time doing what they regard as essential “surveillance” work spotting potential health problems before they develop, are also horrified at the attempt to speed up home helps.

“How long would it take you to transfer someone from a wheelchair onto a shower seat and get them showered and back out again?” asks one nurse. “Apart from the stress this would put on any elderly frail person whether in a wheelchair or not, can you imagine the consequences if they slipped and fell and maybe broke a hip because someone was trying to meet a deadline?”

Noel Treanor, the INMO’s industrial officer in the northwest, says that early discharges from hospital means an explosion in the number of people requiring support in the community – at a time when the moratorium and the vaccine programmes mean PHNs are unable to do vital surveillance work.

“Not everyone is articulate enough to demand the assessment or the follow-up care they need,” says Treanor.

He points out that because manpower is so stretched, nurses in some regions have been given a list of priorities, which beg the question which services are being put on the back burner.

Maureen Kavanagh, chief executive of Active Retirement Ireland, says it is wrong to even contemplate putting a stopwatch on a home help who is assisting a frail elderly person to have a shower or to get dressed.

“I am concerned that these things are being done from an administrative point of view. Timing a shower is a paper exercise – it has nothing to do with the human.

“I would question whether we are losing the human touch in the health service. If we do, this will not be a good country to grow old in.”

160,000

carers in the State

40,000

full-time carers in the State

€212.50

is the maximum means-tested weekly carer’s payment