A report last week by the Irish Health Service Accredition Board of patient files going missing will add to the mounting pressure at a conference this month for patients' interests to be given a stronger voice. Sylvia Thompson investigates
Is the biggest problem in our healthcare system really overcrowded A&E departments?
Or is it a much more fundamental problem of poor communication between medical personnel and patients, a lack of genuine respect and understanding for a patient's experience of illness and a hierarchical system which doesn't encourage a sharing of knowledge between staff and patients for fear of being 'found out?'.
Talk to anyone who has recently been in hospital or to their GP and the first thing they'll tell you is how well or badly they were 'treated'.
Patients nowadays are no longer prepared to be passive recipients of medical expertise, unquestioningly accepting drug prescriptions, surgical interventions, etc. Instead, many of them want to be actively involved in the decisions being made about their illness.
Now, finally healthcare systems around the world are realising that rather than seeing patient empowerment as a threat, it can be turned into a valuable tool to help improve patient safety and prevent the medical errors which have contributed to a culture of blame and defensiveness that is ultimately destroying the caring relationship which should be at the heart of any healthcare system.
Later this month, the Irish Society for Quality in Health Services (ISQHS) will bring together an interesting panel of speakers to address a conference entitled Quality and Safety: the Ultimate Goal.
Stuffy title aside, the conference will offer healthcare professionals an opportunity to hear how patients and their lay care-givers can sometimes see things that busy healthcare workers don't, how patients can have useful insights into how hospitals and primary care services can be better run and how - at a time when chronic illnesses are becoming the greatest burden on healthcare providers - the patients' role in managing their own conditions is the best way forward.
"There has been a realisation that if healthcare providers could find a way of managing 15-20 key conditions [eg diabetes, arthritis, back pain and asthma] which take up 80 per cent of the resources, structural problems in the system could be addressed," says Willie Reddy, director of the ISQHS.
"There is evidence to suggest that if you can inform and empower patients to manage their own chronic illnesses, they will be more compliant with therapies. They will understand their reaction to drugs better and the need for acute care will be reduced."
So, there is an ulterior motive to empowering patients but nonetheless, there are many medical personnel resistant to changing from a paternalistic model - where doctor always knows best - to a partnership model in which the patient is trained to be informed about their condition so that an equal relationship can exist between medic and patient.
"We are hearing stories of how more educated and informed patients are posing a real challenge to the system but what we need to do is to tap into this in a productive way so that the professional is not affronted and recognises the importance of listening to the stories from patients," says Reddy.
Margaret Murphy, whose son, Kevin, died in 1999 due to a series of medical errors has become an international spokeswoman for patients. She is a member of the WHO World Alliance for Patient Safety which was set up last year to improve patient care and develop a partnership approach on a global level.
"There is still a lot of denial, cover-up, defensiveness and fear of being blamed. The system as it exists now isn't serving patients well. There is a huge language barrier between medical personnel and patients which is where the importance of patients' advocates comes in.
"Also, I'd like to see a framework of feedback from patients of their experience of the effectiveness of their treatment.
"Such a framework must be monitored and reviewed. I'd also like to see a change in which medical personnel recognise their limitations and that there is a paper trail and receipting system [eg that a doctor sends an acknowledgement of receiving a letter from a consultant].
"Patients' records are vital and all information should be accessible to patients and doctors," she says.
Margaret Murphy will speak at the ISQHS conference about her son's patient journey, looking at how his case was managed and how it should have been managed and how Murphy family members were dealt with when they sought answers and when they fought and won their case against several healthcare professionals for their son's unnecessary death.
"Patients need meaningful dialogue with medical professionals. We don't just want to be informed about what's going on," says Murphy.
"We need to be allowed to be agents of change. We want genuine participation and a level of humility from the other side. Patients also need to learn how to negotiate through the system in a non-aggressive, positive way.
"Dialogue, not confrontation, is important and where there is fault, there need not be blame," says Murphy.
Following their win in the High Court last year, the Murphy family chose to take €1 in damages.
International patient champions such as Margaret Murphy are important, according to Pauline Philip, the Geneva-based WHO World Alliance for Patient Safety programme leader who will also speak at the ISQHS conference.
"Once medical personnel really understand the various aspects of patient safety, they become less threatened and more willing to be involved to ensure the system is as safe as possible.
"Most big medical errors are caused by a weak system - such as doctors making snap decisions after working for 40 hours or with too many patients under their care - not one individual person who makes a mistake," she says.
In Ireland, there is a growing awareness of the need to involve patients more in the management of their own illness and to improve the healthcare system. For instance, Margaret Murphy was recently asked to join the State-funded Irish Health Service Accreditation Board (IHSAB) survey team to assess hospitals from the patient's perspective.
The IHSAB, which issued its first report last week, found poor management of patients' files, lack of follow-up following accidents in hospitals and poor safety measures.
The Health Services Executive (HSE) is keen to point out that "consumer engagement" is a priority. "Over the last number of months, we have been consulting with patients, patient groups at both community and hospital level. Consumer panels, advocacy and focus groups have been set up in some hospitals and communities, " says Mary Culliton from the HSE.
"We have found out that patients see face-to-face contact with medical personnel as the best way. That they want someone to talk to and to be listened to. Often, they simply want to say something, not always to make a complaint. We have also realised that we need to advertise more that we want feedback from patients," she says.
The challenge now is to act on these findings. But, as Willie Reddy points out, there is also a need for patients to be educated so that they can contribute well in this new partnership model.
"We have to develop trust between both parties which means we need patient representatives who won't be on a soap box, pushing a single issue," he says.
The ISQHS conference will celebrate innovative work in this area for the first time through the ISQHS Quality in Healthcare awards. The award categories include Improving the Patient Journey, Promotion of Patient Participation in Healthcare and Quality of Patient Safety.
The award winners will no doubt be the pioneers of the 21st century, championing patients' role as partners in a healthcare system much in need of a mindset change.
• Quality and Safety: The Ultimate Goal, the 10th annual conference of the Irish Society for Quality in Health Services (ISQHS) will be held in Croke Park on September 29th. It is open to healthcare professionals, patients and patient advocacy groups. €170 per participant and concessions are available. Tel: 01 8092585 for booking details.