The homecare lottery

The government's stated policy is to support older people to live at home and in their communities for as long as possible, but the reality is very different for the sick and elderly
Conlon and her elderly parents received a visit from a district nurse last Wednesday to assess the homecare package being provided to the family by the state. The Conlons, who live in Wicklow, receive 24 hours of homecare weekly. That may seem generous, but Conlon's father is 91, is blind, has chronic arthritis and can no longer use his hands. He wears a catheter at night. Her mother is 85, has dementia and diabetes, and is incontinent. Conlon has been a full-time carer for 11 years, but the job has become much more onerous as her parents have aged and their conditions worsened. It is a 24/ 7 job, as she also tends to her parents at night. Until recently, Conlon got a break every six or eight weeks when her parents went into respite care. That service has closed, meaning she now gets no breaks. Her carer's allowance has also been cut, and the modified house she moved into with her parents is in negative equity. Now she is concerned that her parents' homecare package may be cut. "I'm nervous," she said. "There is no way I could do this with any less help than I have. I'm already struggling; I can't even make doctors' appointments myself right now." Conlon has been offered a nursing home place for her mother, but is reluctant to go down that route. "My mother always said to me that she wanted to stay at home," Conlon said. "When she would hear about other people being put into homes, she would say, 'please don't do that to me'." However, Conlon may have no choice if the family's homecare package is cut. The Conlons' situation is far from unique. While the availability of high-tech medicines has had extensive coverage in recent weeks; the erosion of community care services and the postcode lottery that exists

Harriet

for families coping with chrome illnesses gets little attention. There is still no single tool to determine patient need and ensure equitable access to services. There is no 'entitlement' to homecare services and the level of provision varies greatly throughout the country. A National Economic and Social Forum (NESF) study in 2009 showed the average weekly expenditure on a homecare package ranged from 128.99 in one area to 497.40 in another. The NESF also highlighted regional differences that saw, in one district, 52 homecare package beneficiaries for every 1,000 people over 65 in 2008, compared with just eight in another similarly populated district. Those on the ground say little has changed. Maurice O'Connell, chief executive of the Alzheimer Society of Ireland, said waiting lists to access homecare packages were climbing. "In the Dublin region, there are particularly high waiting lists we have some 1,300 people awaiting services there," O'Connell said. "That figure . . . has gone up by 30 per cent over the past year." The Alzheimer Society and others receive funding from the Health Service Executive (HSE) to provide homecare packages. O'Connell said it had tried to maintain services, but was witnessing "the erosion of a much-needed resource" that helps keep people at home and out of acute beds. "People are going into acute or long-term care prematurely as a result of what's happening," he said. Dr James Reilly, Minister for Health, has said people are going into costly nursing homes far too readily. Earlier this year, a HSE audit of almost 1,200 summary assessment reports on older people found that, in 40 per cent of cases, the individual had not been considered for a homecare package. In a further 40 per cent of cases, it was not clear
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if the individual had been considered for such a package. The audit also found that, in 16 per cent of cases where people had been placed in long-term care, they were described as having low dependency levels, while in 29 per cent of cases, the dependency level was described as medium. Last December, it was reported that the Department of Health had asked the HSE to establish a special fund to pay for services and facilities that would allow more older people to remain in their own homes, rather than being moved to long-term residential care. The new fund was established this year. The department said "intensive work was under way". The older people's budget has fallen to 390 million down from 409 million in 2011. This pays for a variety of services for older people such as home help, homecare packages, respite care and other health promotion initiatives. As the population ages and demand increases, carers and their families face mounting challenges to access care. Joe Lynch, national manager for the Irish Motor Neurone Disease Association, said many families the association dealt with were "disheartened and frustrated" at having to badger the system for support for high-dependency patients. Where once the association provided a "top-up" service, it said it was now providing the majority of community-based homecare to those with the disease. He and others say the availability of care packages is ad hoc and inequitable. "At the moment, it is very much a postcode lottery there are some areas where you can't get a care package and other areas where you can," Lynch said. "It is down to local resources." Professor Orla Hardiman, a consultant neurologist, said many with motor neuron disease were struggling with four or six hours of help. "The spouses [of patients] are usually close to exhaustion and are too worn out to go public to seek an improved care package," Hardiman said. "The maximum package that we can get from the HSE for anybody even those with severe and progressive disability is around 20 hours. The families must make up the remainder of the care, either by providing a rota or purchasing care through the private sector." Hardiman expressed concern
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about recent cases in which private patients have accessed enhanced care not available to ordinary public patients by shifting from the private to the public system. She highlighted the case of one patient who went public last year and was now receiving over 150 hours of mechanical ventilation, which assists or replaces spontaneous breathing for patients with end-stage motor neurone disease,

at home.

The HSE does not sanction this type of homecare package due to the enormous expense involved, but Hardiman said this case had inadvertently identified a way for patients to access enhanced care by entering the private system, creating a crisis, pleading inability to pay and having the public system cover the cost. While nobody can fault any pa-

tient for trymg to access care m the environment they want, the problem, according to Hardiman, is that she now has other patients "who believe that it is possible to be at home with a full state-sponsored healthcare package. Why was it sanctioned? For fear of negative publicity? Why not have an honest debate?"

Harriet Conlon with her parents, Michael and Jenny, at their home in Rathnew, Co Wicklow
mily," she said. "The endless

Lisa Gilmartin sought a homecare package for her mother

Jean, who has early onset Alzheimer's, two years ago. "It took us a year to get any help at all," Gilmartin said. "1 was shocked. My mum had moderate dementia at the time and needed help with her medication, dressing and cooking.
hours of homecare, but the funding wasn't available, so we just got two. I was also told, in a roundabout way, that I would have to wait for someone else to pass away in order to get more hours, as the funding simply wasn't there." Gilmartin, who lives in Dublin, said the system of applying for

time families have to put into chasing the HSE to try and get help and support is so unnecessary. It should be automatic. '"It has been a real struggle. I work full-time and I have a young baby, and I don't live with my mother. I have tried to adapt, but it is a scary situation to be in. I'm constantly worried about my

paperwork and the amount of

"I was told we would get four

mother, but I simply can't be there 24/7. 1 call into her every

day but she is not being cared for the way she needs to be."
Gilmartin's mother now has moderate to severe dementia, and her homecare package has increased. Gilmartin would like to see the government introduce a means-tested scheme to help families and ensure an even playing field. "The Fair Deal (nursing home support scheme) is meanstested," she said. "I don't understand why there isn't some kind of similar package in place

homecare was unnecessarily

stressful "When people are diagnosed with an illness like this, it is a very upsetting time for a fa-

for home care."

Lisa Gilmartin with her mother, Jean