Losing patience with an unhealthy system
The Irish health system is maddening not only for patients but for their relatives, who must withstand poor communication, baffling rules and often impersonal care
Caring hands: Kara Madden looks after her son, who has schizophrenia. Photograph: Michael Mac Sweeney/Provision
Bed bound: the health system is frustrating for the people who work within it as well as the the people who use it. Photograph: Thinkstock
Health services are “a conspiracy against the public”, according to Prof Aidan Halligan. He has borrowed the phrase from George Bernard Shaw, who called all professions a conspiracy against the public.
Prof Halligan, the director of education at University College London Hospital, is a close observer of the health service in Ireland, his native country. “It’s a shortage of compassion. Just as the only thing that matters in art is the part that can’t be explained, so the only thing in a medical system that matters is the part that can’t be measured,” he says.
Or, as a woman asked of our health service last week: “Whose job is it to be kind?”
Ireland’s health service is not the only one that has seen standards slide and public confidence fade. The Welsh MP Ann Clwyd, who was formerly Tony Blair’s human-rights envoy to Iraq, watched her husband, Owen Roberts, die of hospital- acquired pneumonia at University Hospital of Wales, in Cardiff, last October.
Afterwards, Clwyd said hospital staff had treated her husband with “coldness, resentment, indifference and even contempt”. She said her biggest regret was that she didn’t “stand in the corridor and scream. I have tried to get bills through parliament on the welfare of battery hens. My husband died crushed, like a battery hen.”
The nurses, according to Clwyd, were brusque. She talked about “the normalisation of cruelty” within the British health service. Since she spoke out she has been astounded by the response from the British public, as well as from National Health Service workers.
The treatment of patients and their relatives by Ireland’s health service has been widely discussed in the media this week, including in my column in last Monday’s Irish Times and on national radio.
Everybody knows that our health service is in crisis, and perhaps few know it better than those working within it. Commenting on the week’s debate, a spokesman for the Irish Medical Organisation says: “The IMO has been warning for some time about the deterioration of patient services across the health services over the past number of years, but the authorities have been very slow to engage.
“There are different factors at play here,” says the spokesman. “Inevitably, one of the realities is that you are seeing the cumulative impact of increasing workload and reducing resources now impacting directly on the quality of care and support that individual patients can receive. This has been taking place quietly for some time, but it’s clearly having a detrimental impact on patients and their relatives who have spoken on the issue so eloquently this week.”
Martin Varley, the secretary general of the Irish Hospital Consultants Association, outlines some of the pressures on senior doctors. “Consultants focus on diagnosing and treating patients as effectively as possible in medically appropriate time frames,” he says. “Regrettably, Ireland has about half the number of hospital consultants that it needs.
“In recent years acute hospital budgets have been cut by 25 per cent. As a consequence, consultants work extremely long days and often have two to three times more patients than hospital consultants in other countries.”
Phil Ní Sheaghdha, the director of industrial relations at the Irish Nurses and Midwives Organisation, responds to the suggestion that relatives of patients find our health service chaotic by saying: “They’re right.”
Ní Sheaghdha explains how admitting patients through emergency departments to beds all over the hospital has been a disaster. She says the HSE has done a good job of publicising its complaints service – Your Service, Your Say – and its freephone number, and she welcomes complaints.
Ní Sheaghdha says “it is expected that nurses are courteous” but also points out the pressures on members of her profession. The previous day, she says, “I had a nurse here who was taking care of 40 elderly patients. She was the only nurse on duty, in a public nursing home.”
Halligan says our health service is overmanaged and underled. The system is broken, but the people who suffer most are patients and their families.
Here, some relatives of patients share their experiences of the Irish health system.
Alison and Charlotte Cox
Every day Alison goes to see her sister in hospital, and every day she brings a spoon.
“There is only a plastic spoon on the tray the food comes on, and it cuts her lip,” says Alison. She comes to the hospital to try to get her sister Emily to eat. Emily was admitted to hospital last winter, having had a stroke at home. Alison usually stays at the hospital from 11am to 3pm, seven days a week. She came all through Christmas and New Year. “No one from hospital management and no senior nurses came to the ward to wish the patients Happy Christmas or Happy New Year.”
Alison used to come at breakfast time, but she gave that up. As it is, these daily visits cost her a lot in parking fees. “About €9.40 a day,” she says with a smile. Her other sister, Charlotte, reminds Alison that if you bring your parking ticket to hospital administration they will halve your parking fee. Alison says the hospital administration building is miles away, and she has been coming to the hospital through a winter and spring of very bad weather. Sometimes she is very tired, so she just pays the full fee and goes home.
Charlotte was worried that Emily was not drinking enough fluid. She asked about getting Emily a special cup, like a baby cup. The occupational therapist brought her leaflets for a medical supplier, and told her to look one up. Charlotte wondered if the occupational therapist might not look up a drinking cup, but she was told that would not happen.
At one point, distressed that their sister had not had physiotherapy after her first two months in hospital, Charlotte went to a physiotherapy supplier and bought two supportive belts. Then Charlotte and Alison started giving Emily physiotherapy themselves, in the hospital. “The doctor said, ‘Don’t you dare do that any more,’ ” says Charlotte. “I asked him why not, and he said, ‘For health and safety’. I said, ‘For whose health and safety?’ Anyway, we did get her leg moving. And after that they brought some [physio equipment] to her room, and we had never seen that before.”
When Alison found Emily, she knew she had had a stroke, although the ambulance man told her to be quiet when she tried to tell him so. It is possible to inject medication to treat clots within hours of a stroke, but it must first be established whether the stroke was caused by a clot or a bleed. By the time Emily had a scan to establish this it was too late to administer the injection, although she would have been a good candidate for it.
In her mid-60s, Emily was too young for the geriatric ward, where most of the stroke patients are treated. There is one stroke nurse in the hospital, but she did not see Emily for a month. The stroke nurse later apologised but has visited only sporadically since.
“So there is no leadership. There has been no continuity of care,” says Charlotte.
“There is no supervision, although there are plenty of supervisors. I see them at Mass,” says Alison. “Their beepers go off during Mass.”
Emily’s medication was changed, and Alison discovered her having a seizure alone in her room. On one occasion she had a bout of diarrhoea, and Alison came back four hours later to find her in the same soiled nappy. Emily’s urine bag overflowed and paper towels were put on top of the spillage. “I had urine all over my shoes,” says Alison.
The two sisters are vocal, organised and dedicated. “I am heartbroken for all the patients, not just for my sister.”
It took them eight weeks to find out that doctors from another hospital visit younger stroke victims at the hospital. Charlotte writes to consultants to request meetings. “I would never expect to get through to a doctor on the phone.”
Kara M adden
Kara Madden’s experience with the health service started at a very low point, but it has improved so rapidly that now she says of her son Thomas, “He’s better than I am. But 10 years ago it was a horrific experience.”
Thomas was diagnosed with paranoid schizophrenia as a teenager. “All my expectations for him were gone out the window. I would have given him all his medication at the same time [in other words, killed him] if I could, because I was given no hope at all. I can actually say to you that the only conversation I can recall about Thomas having paranoid schizophrenia was a psychiatrist telling me Thomas had the condition and that he had a 70 per cent chance of killing himself. I hyperventilated in front of [the psychiatrist]. Then I had to drive myself home.”
Madden, who lives in Cork, was given no further information. “Not even a leaflet.” She remembers the first time Thomas left the hospital after his diagnosis. “The first time I brought him to Roches Stores, here was this 16-year-old doped up to the eyeballs, drooling out of the windows, and you’re sitting there on your own, crying.”
Madden and her husband, Thomas’s father, split up. Her ex-husband subsequently died. From the start of Thomas’s illness, she was on her own with him. “I have a daughter, Gillian, and she was angry, embarrassed and distraught, with no one to talk to .”
Madden found the lack of information and lack of support from the health system very hard. There was no information on where to go or who to see; there was no support about medication; and there was no way of recognising the early warning signs of a relapse. “There was no sense of recovery, no light at the end of the tunnel and a lot of isolation. I had a revolving door in and out of the hospital as Thomas relapsed and had to be readmitted. I was on the verge of a nervous breakdown. Thomas was noncompliant about taking his medication.”
She objected to the fact that it was up to her and other relatives to have to sign their loved ones in to hospital in the crisis of involuntary admission because, as she gracefully puts it, “That comes back on you when they’re sick.” It took her a long time to find out that there are authorised admission officers. “When they’re an involuntary admission, they have to go to a tribunal after 21 days. The parent is never asked to the tribunal.”
Madden also hates the fact that if a psychiatric patient has a psychotic episode after hours, they have to go through the emergency department in order to be admitted to hospital.
She believes that the rules about patient confidentiality are often used cynically to keep parents at bay. However, perhaps because of the length of her relationship with the health service, or perhaps because the psychiatric services were in such a terrible state when she first encountered them, she believes that she and Thomas have a much better relationship with them now. “Every mother thinks their child is in crisis. I had to really get over being so protective. A lot of the health workers are as frustrated as we are.”
She has taken steps to improve her life. “I went to Shine, a support group. It was my lifesaver. It took me four years to get there. I found a lovely community welfare officer and a social-welfare officer. I stopped looking at the internet and started talking to other carers and other service users. Thomas wanted to be independent, and he now lives on his own and has his own life.”
Madden speaks at conferences about mental illness and works hard at their relationship. “We respect each other’s space. We learned that the hard way. Once I came out of the box of being a carer I could see it wasn’t all doom and gloom. When my ex-husband died, Thomas was my rock. I’m so proud of the guy.”
“I’m fighting for five months,” says Eileen Dwyer, her voice breaking. “The staff react to everything I raise, but they’re not proactive. What happens to the little old dears who have no one?”
Members of the Dwyer family, which is a large one, come to hospital for all of their mother’s meals except breakfast. “The staff just don’t see it as their role to feed the patient,” says Dwyer, who keeps careful notes. She has seen her mother’s care plan. “ ‘Care plan’ is the new buzz word.” She has called meetings. She has written letters. She has demanded air mattresses.
The family also come in to make sure their mother is stimulated. The television in her room is not routinely turned on. “These are people who watch Judge Judy and Nationwide at home,” says Eileen.
Every day Dwyer drives her father to visit his wife. He says, “Don’t bring me here.” He means, says Dwyer , not to bring him to the same hospital if he becomes ill.
Her mother was admitted to hospital having fallen and suffered a fracture. She is otherwise very healthy. “She has been a wonderful mother,” says Dwyer. She did very well for the first four weeks and was on the verge of being discharged when she came down with the first of four hospital-acquired infections she has endured during her stay. When asked whether her mother has had MRSA, Dwyer replies: “Not yet.”
The staff are great, she says, but there is no continuity of care. Surgically, her mother has had wonderful care. “But the basics are the problem. They piece these people back together and then they leave them there. I read my mother’s file, and it doesn’t say anything in it about her not eating. ”
Her mother is pretty happy, she says, although she has severe bedsores. And she is very clean. “Because I’m fighting. But I’m tired of fighting. Old people marched to keep their medical cards, but they will have to start marching about hospital care. Otherwise, bring in euthanasia and let them slip away.”
The Dwyers have been reading about Florence Nightingale; they sent me a series of her quotations, of which the best is the shortest: “The very first requirement in a hospital is that it should do the sick no harm.” Dwyer’s sibling continues: “It is a sad day when I have to confess to having more faith in the general nursing care and health outcomes in a Crimean War field hospital from the 1800s than a hospital in Ireland in the 21st century.”
Some names have been changed