Patients upset at lack of respect

I can still feel the anger rising at how my mother and I were treated. It was a litany of bad manners. To be questioned was, it seems, a downright slap in the face for the consultants, and we felt we were really for it after we had the nerve to question the way we were treated.

- a nurse speaking about her mother's cancer treatment

My poor husband had an unfortunate faith in his doctor . . . so he died prematurely through carelessness. I look forward to the time when poor performance by doctors will be scrutinised and treated as an issue, and not just amount to negative correspondence between the Medical Council and the patient or their relatives.

- a wife speaking about her husband, who suffered from diabetes and died of an embolism after an amputation

These two comments are a sample of those received by Patient Focus, a patient advocacy group. "Undignified is the word most often used to describe people's bad experience of hospitals and medical care," says Dr Tony O'Sullivan of the organisation, who estimates that up to 100,000 people a year have a negative experience in hospital.

Patients being transferred between hospitals without their families being informed, delayed and cancelled operations, lost reports: these are the types of situations Patient Focus is told about.

At the crux of all of them is a lack of communication between health professionals, patients and their families, which many patients feel is the result of a lack of respect.

Kathryn Doherty describes the way Steven, her three-year-old son, was given an anaesthetic as being like an abduction. "We were all in the operating theatre with the sterile outfits on, and then they came from behind and put the mask over his head without telling him anything.

"He started to panic, kicking and hitting, and they asked me to calm him down. Some other members of staff started talking to him about Barney, which was ridiculous timing. Why didn't they spend a few minutes explaining to him what they were going to do beforehand instead?"

Steven was in hospital to have grommets put in his ears. What should have been a straightforward procedure turned into a trauma. "I think it was inhumane, the way he was treated. He had a level of fear and panic simply because things hadn't been explained. He came out of the anaesthetic in the same panic he went into it. He didn't speak for up to an hour later."

Doherty says she has no complaints about the medical expertise or the hospital staff in general; it was the simple lack of communication that caused the problem. "Health is not just about physical health: there are other components there, too," she says.

The issue of poor communications between medical professionals and patients is not new, and the situation has improved dramatically in some places. Yet many who have been in hospital over the past few years will tell you they feel their treatments were not properly explained, partly because doctors and nurses did not have time to sit down with them.

"Most people sue medical personnel out of frustration. They hope to hear the truth in court, and then they hear completely different versions of the truth. The majority of people who contact us say: 'I don't want to sue. I think it is terrible what happened to me, and I want an explanation, an apology and to make sure it doesn't happen to others.' Through mediation between doctors and patients, we can save millions of pounds in litigation," says Dr Tony O'Sullivan.

"The problem is that many doctors and specialists view complaints as personal criticism. Until we grow up and get out of that habit, we will never benefit from complaints. Sometimes we don't know the answers, but I find in my practice that patients are reassured if I am prepared to check something out. A lot of mistakes are made because medical people are afraid to ask questions themselves. Complaints should be seen as the jewels of a health-care system, because they are often the only feedback many professionals are likely to get.

"I think that many medical professionals have got it wrong when they say that patients only want to know about facts, statistics and positive outcomes, to the exclusion of all else. This applies to about 10 per cent of patients, but the rest are more worried about how they will be cared for, how comfortable they will be. These things matter more than the number of CT scans they have had. That phrase 'nothing else could be done' should be obliterated from health care. People can always be given simple humanitarian care."

A health ombudsman and lay people on the bodies that register doctors, nurses, dentists, opticians and pharmacists are believed to be two aspects of the Government's proposed health strategy. However, the simple but important issue of improved communication channels between medical professionals and their patients, in everyday hospital and GP settings, has, it seems, yet to be prioritised.

In a recent poll of the public's view of the proposed health strategy, one in three people said they saw the plan as a PR exercise.

Dr Michael Boland of the Irish College of General Practitioners points out that because GPs are so busy, they refer patients to the hospital service sooner than they otherwise might. "GPs don't spend as much time doing their own investigations because they don't have time. We have made the point in our proposal to the health strategy that we need more GPs with smaller patient lists. We also need a whole range of specialist services available in the community."

Having more people treated in the community by a team of health professionals rather than in hospital now appears to be an integral part of the proposed health strategy. This will go some way towards preventing patients from being caught up in the bureaucracy and anonymity of large hospitals, but there will still be a need for good communications. Boland sees the proposed Medical Practitioners Act as having a role to play. "This will include a legal requirement for doctors to be re-accredited on a five-yearly cycle, depending on their continuing education, performance review and a practice audit."

Finbarr Fitzpatrick of the Irish Hospital Consultants' Association says the relationship between a consultant and a patient is different from that between a GP and a patient. "Patients see consultants for one episode of their illness and never again. The advocacy role of the consultant is to campaign to health boards on behalf of patients for better resources, so that they can treat patients in a timely fashion. There is a conflicting demand with the volume of patients and each patient's individual expectation of getting time, and the next of kin getting time, to discuss the problems. The figures just don't match up. We have said that we need 1,000 extra consultants in the public health service."

If Irish patients are to become "partners in their own health care", as Micheβl Martin, the Minister for Health and Children, puts it,then the guidelines for such partnership need to be set down. The Irish Patients Association clearly believes that hanging framed copies of patient charters on hospital walls will not be enough.

The association has put together a "bill of rights" that it believes encapsulates patients' entitlements, including those of receiving sufficient information about their conditions and about proposed treatments, being treated with respect, being able to choose a GP and having access to a second opinion from a specialist.

"We believe such a patients' bill of rights should be written into legislation. Patients' charters are only aspirational, and they are failing patients," says Stephen McMahon of the Irish Patients Association, which would also like to see trained advocates as part of the health-care system.

"These advocates would have basic counselling skills, be familiar with hospital policies and understand the complaints procedure of the Medical Council, as well as the rights of patients under the Freedom of Information Act and Social Welfare. Their primary concern would be to act on behalf of the patient."

Contact Patient Focus at 087-2630442; the Irish Patients Association is at 22-24 Lower Mount Street, Dublin 2 (01-6610662)