"SINCE our launch we have had a steady stream of calls from the public," says Stephen McMahon.
"Some just want to say well done, others phone with specific complaints, and many want to let off, steam. We've definitely hit a nerve."
The recently established Irish Patients Association aims to be a representative, independent voice for patients, and to work in partnership with health service personnel to improve the quality and safety of the service for all concerned.
Eventually they hope to open an office in Dublin with a database of information which would act as a channel between patients and service providers.
Stephen McMahon says the need for such a consumer group has been with him for some time. During a spell in hospital in the 1980s, he saw at first hand how his fellow patients fretted with concerns that a too busy system often hadn't time for. "Some time later I was in out patients' and noticed a little old lady in dark coat and woolly hat. She had been waiting ages like everyone else and wanted to leave to feed her cat. The receptionist told her she would lose her appointment and it could take her six months to get another. It showed there was no understanding of basic customer service by junior administrative staff. I thought - who is looking after the interests of that old lady?"
But crunch time came when his wife Fiona suffered severe postnatal depression and was hospitalised after the birth of each of their two children, Simon, now nine, and Emma, seven. "Our own GP was tremendous and played a stormer, but I was shocked at the lack of available information about the condition," says Stephen. "I was given two contradictory recommendations on the hospital treatment and learnt mainly through my own research."
"Looking back I could have done with more support," says Fiona. "There was very little explanation of what they're giving you, no information on side effects. I had some very frightening side effects from medication the first time and was unprepared for them. They ask you a lot of questions, but rarely feed back explanations or acknowledgements. I felt nobody believed me. Doctors tend to heal the bit that's not well, but don't pay enough attention to the whole person".
Indeed the doctor patient relationship is the core of the issue, and, not surprisingly the initial public response to the establishment of the State's first consumer association for patients has been a bit of national bloodletting.
"We are getting a lot of information about how doctors fail patients" says Stephen McMahon. "Poor communication is a big issue. We have examples of people told bluntly about terminal cancer while standing on corridors. This is important on many levels, not least because research indicates that the way patients are given their diagnosis and the kind of support they receive afterwards will affect the outcome. Those who receive good quality emotional support tend to fare better.
"There were examples of people not understanding their diagnosis when they left the surgery, which gave rise to repeated visits. This drip feed effect wastes time and money. Or people were given information about options but were not fully aware of the implications and have been carrying baggage around about it for years. More seriously we have heard of patients who queried their treatment and were told in no uncertain terms that they shouldn't question the doctor. People have the right to ask for a second opinion, and doctors shouldn't take it personally. Doctors shouldn't be threatening, intimidating or coercive, and we have examples of all three responses.
Dr Tony O'Sullivan is secretary of the Irish Patients Association. He is, one of a number of doctors who joined, and sees no dichotomy between his profession and his involvement.
"I AM a spokesman for many doctors. The old doctor patient relationship may have served in the past but the emphasis is shifting and many of us accept this. The College of Surgeons has a special input on communication skills for doctors, the Meath Hospital offers a course in communication skills for new interns, and most recently, the IMO is developing a number of communication modules.
"Of course, there are some doctors with a paternalistic approach who expect to command respect, rather than earn respect. A high proportion of interaction at consultant level is didactic, prescriptive and dismissive of the patient. So it could be that the people who most need a course in communications may be the ones that won't avail of it."
The new organisation has been busy forging cross sectoral links. They recently met the Irish Nurses Organisation and put the case for the patient's needs in the event of a strike.
Last week the IPA called for a no strike clause for those working in such an essential service. Stephen McMahon addressed the recent IMO conference in Killarney, significantly sharing a platform with Dr Cormac Macnamara, president of the Union of European Medical Organisations, who spoke of the "clear need for better quality communication between us and our patients". Dr Macnamara continued: "In recent years we have seen calls for doctors to be protected from their patients, charters of rights for doctors and other health care workers - all of which may seem perfectly reasonable from the perspective of doctors who see themselves under seige by patients. However, in the wider community, such retaliatory calls merely confirm the community's perception of a profession increasingly anxious, sensitive, defensive, or even paranoid."
Stephen McMahon took the opportunity to stress that the growth of healthy consumerism need not mean an increase in damaging litigation: "In one way or other, patients want their voices to be heard. We're not interested in litigation, on the contrary. Most people who contact us with complaints want only an explanation, an apology, an acknowledgement. We could help to nip problems in the bud and help prevent, not promote expensive litigation which in the end we the patients pay for. Some cases end up in court unnecessarily when all people want is an apology and a refund of fees.
THE IPA has been asked to make a presentation to the Southern and Eastern Health Boards both of whom are re examining their complaints procedure. Certainly, the area of complaints against doctors is a suitable case for treatment.
"Most patients do nothing because they are afraid a complaint will compromise the standard of their future care," says Tony O'Sullivan, "or because they think nothing will come of it. Or they know they will be met with closed ranks and the run around.
"We should have a complaints procedure which is open, accessible, and available.
"Doctors should talk to patients when things go wrong, explain, apologise, it's part of our job. It is my experience that patients respond positively to this approach. Further down the line the IPA would be interested in examining the area of alternative conflict resolution. There are models of this in both Britain and America where a no fault, fast track system brings both sides together to mediate."
Tony O'Sullivan has a four page wish list of issues he would like to discuss with patients and service providers. These range from staffing ratios in nursing homes through prescription pricing in pharmacies and health board waiting list initiatives to lack of privacy in hospital wards: and access to health services for vulnerable groups such as travellers and homeless people. An area of current concern is patient confidentiality. It arises both from the expansion of information technology and the increased pressure on health personnel at many levels to release patient information to insurance companies and Government departments. Then there's the human element in which leakage occurs.
"In America they did a study where a couple of people went up, and down a hospital lift all day, says Tony O'Sullivan. "Some 14 per cent of the conversations among staff were about patients' confidential details. I think we Irish are at least as good talkers as the Americans. Patient confidentiality is an issue that needs more discussion.
"Are doctors arrogant? Vastly so. I can be arrogant myself at times. We are brought up to look to the top of the pyramid. The feeling is if you do well you will become a consultant and if you do very well, you become a professor and won't have to deal with patients at all.
"Inequality is built in with language which can actually threaten: for example, telling a patient who's had a D & C that you have grade 2 hyperplasia, when what you really mean is that everything is probably normal and needs no treatment."
MANY who contact the IPA feel the new organisation is timely and welcome. "We are coming of age," says Stephen McMahon. "As an educated, well informed people we expect value for money. Gone are the days when the doctor and nurse, garda and priest were the only literate people in the village, and the doctor was up on a pedestal. But it's also true that in an age when sacred cows are being torn down, the medical profession is one of the few left that still hold the respect of the public, we want that to continue.
"I think patients too have to be aware of their responsibility. In an ideal world, you would like half an hour with your doctor. Surveys show you will get an average 10 minutes, maybe less. If you re going to see the doctor, prepare. Explain your symptoms simply, rather than telling your life story. Listen to the advice you re given and make a note of any instructions you should remember. Ask questions. Don't leave without understanding what you need to understand. If you are prescribed, say antibiotics, inquire about uses, side effects, alternatives. Patients will need to be more routinely pro active - rather than accepting everything mutely."