The following is an extract from one of the many letters received by the Irish Patients' Association:
"She was told that her mother had six months to live in one sentence, and then the consultant walked out of the room. She promptly left the hospital, got in the car and pulled in half way home to vomit and call for help."
It was written by a woman who is herself a health professional. Writing about a friend whose mother died of cancer last year, she added: "This is happening day in and day out but no one gives a toss. I have just tipped the iceberg with this letter. I could go on for a week."
Another woman wrote about a consultant showing so little feeling when reading her scan results that he might as well have been "reading out a bus timetable". She explained that since they were her results and "not some anonymous specimen", she took them very personally. "I am not asking for a miracle cure but a little bit of understanding would go a long way."
These letters by no means contain the most serious criticisms received, but they highlight how easy it would be for improvements to be made - how easy it would be to treat people with dignity. Dignity is a word which crops up again and again in the association's report - the lack of dignity with which patients are treated at the hands of our health services.
A third letter showed how little things have changed in recent decades. "I got polio in 1947 . . . I was then only 13 years of age and used for clinics by 3 surgeons. I still very much remember the terrible experience it was to be stripped naked on a trolley in front of 40 male students. I also had an experience 12 months ago in a well-known Dublin hospital. The doctor that I was seeing brought a student into the cubicle with him and neither introduced her nor asked me did I mind."
The letters, as the IPA points out, are valuable insights into the anxieties and problems experienced by patients and relatives. It is clear that healthy people, including the medical and nursing professionals, often have difficulty understanding the powerlessness of people who are sick.
Those who were sick use words like "degraded", "humiliated", "powerless", "indifference", and "barbaric" time and again when describing their experiences.
Patients spoke of being almost invisible. They described long waits in out-patient departments, difficulty in changing GPs, rudeness, insensitivity, lack of privacy and confidentiality, and nowhere to make their feelings known. "They feel they have to struggle to be noticed," said the association, which received 65 letters and numerous telephone calls in the past year despite not having a registered office or telephone listing.
Many who make contact feel a sense of cultural shock, says the IPA. "A sense that there is a wealth of silence and a poverty of dignity and accountability within the system and these militate against patients in many ways".
The report states that the issues of communication, dignity, and human cost of mistakes or lack of consent, as well as the right to be heard and seek answers when things go wrong, are all major problems for patients. "Patients say the system denies the existence of these problems. This is why it is so difficult for the patients' perspective to be included. The culture makes sure it isn't."
A health professional who found herself at the other side of the white coat expressed it well: "Up to now we never had to have dealings with hospitals or consultants from the other side of the counter, so to speak. We approached with good faith that the system would help us through this most vulnerable time . . . What we got was a litany of bad manners, to say the least . . . Heaven forbid we questioned their judgment. To be questioned was, it seems, tantamount to a downright slap in the face. It wasn't the treatment, it was the way we were treated."
Others who contacted the IPA said they had been physically or sexually abused or had been treated medically without their informed consent.
Many hospitals do not have complaints departments and if they do, says the IPA, they do not advertise them. "At best it takes a very long time to do anything about problems. There is a marked absence of an independent appeal system. Patients say complaints to the Medical Council take a very long time too. They believe the jurisdiction of the Medical Council in relation to disciplining doctors is too restrictive."
There is nobody, the IPA points out, whose sole function it is to defend the interests of the patient - who has no conflict of interest in doing so. The role of the Ombudsman is an exception to this but his function concerns administrative matters only and does not apply to the voluntary hospital sector.
"In other words, because people feel excluded they are unsure of the system's ability to be its own watchdog, not to mention adjudicator or judge. They doubt that the system can be trusted to bark, let alone bite in defence of patients".
The IPA points out that it is a voluntary organisation. While there are many areas where it would like to expand, it is restricted through lack of funds. An estimated £250,000 annually is needed, it says.