‘I don’t think I’m a troublemaker, but when something goes wrong I want to know why’

RTÉ Investigates showed the problems families face when a loved one loses capacity

David versus Goliath doesn't get any more pronounced in Ireland than the battles between vulnerable patients and their families on the one hand and the behemoth that is the Health Service Executive on the other. The high-profile cases end up in the courts or on the front pages, but away from the limelight scores of families grimly struggle with bureaucracy over alleged failures in care.

This was the terrain covered by RTÉ Investigates: Troublemakers (Thursday, RTÉ One, 9.35pm), about people "daring to challenge" the HSE. Just what does happen when you raise concerns about your loved one in HSE care, the programme asked.

The answer wasn’t pretty. Across the country, a variety of families had asked questions, found themselves in dispute with the health service, and claimed they were being victimised for speaking out.

Front and centre was Patrick Fitzgerald, a retired trade-union official who finds himself largely locked out of Cherry Orchard Hospital, in Dublin, where his beloved wife, Anne, is a long-term resident of the Sycamore unit. Anne went to put out the bins nine years ago, slipped on ice and suffered a life-changing brain injury.

Life is like that sometimes, catastrophe out of clear blue sky. Still, Patrick was pleased to have found her a place in the unit – until he started to notice what he regarded as lapses of care. When Anne was left waiting for scheduled physiotherapy, her clearly devoted husband wanted to know why. Instead of having his concerns addressed in line with the HSE's Your Service Your Say policy, his relations with staff quickly deteriorated.

“I don’t think I’m a troublemaker, but when something goes wrong I want to know why,” Patrick told the programme. Staff complained about aggressive and abusive behaviour, allegations he rejects. “I can’t understand why staff would be petrified of me,” he said later, accusing them “bigging up” their side of the argument.

The hospital carried out an Orwellian-sounding “risk assessment” of him that cut his visiting time to three hours a day. He protested outside the hospital, and his hours were cut further, to one hour. Staff told him not to use his green pen when signing in. His daughter Frances tried to fill the visiting void and ended up being accused of “similar risk behaviour”. Mediation has failed to resolve the dispute.

Sometimes the smallest wars are the bitterest.

Over in Co Clare, Lourda Finn had gone through a similar battle with the HSE. Her late father, Gerard, an Alzheimer's patient, was admitted to Cappahard Lodge nursing home, in Ennis, in 2005.

Lourda and her sister Sharon were concerned when, in 2006, staff noticed Gerard had extensive bruising. They reported their concerns to the Garda.

In an escalating dispute with the HSE, the sisters were told their visits would be restricted unless they signed a legal agreement to behave themselves at Cappahard. They refused, and were then barred from visiting their father.

“Your right to visit is used as a weapon against you when you raise concerns,” Lourda said.

On the night Gerard died, the sisters were asked to leave the nursing home at 10pm. He died within hours of their enforced departure.

Six years after their father’s death, after a protracted investigation, the HSE unreservedly apologised to the Finn sisters.

For the usual legal and corporate reasons, the voices of staff were almost absent from the programme. (One exception was a care worker in Waterford who was abused after a complainant mentioned her favourably.) It was hard, therefore, to assess the disputes' merits. The programme's use of hidden cameras yielded little. The variety of cases, which ranged over different areas, years and issues, suggested the material was mined from RTÉ Investigates' Miscellaneous folder.

What did come through was the lack of rights of next of kin when a family member loses capacity, unless an enduring power of attorney has been signed. And with 25,000 extra people turning 65 every year, the issues the families in the programme face will confront many more people in the years to come. It could be you. A chilling thought.