A network of consumer panels aims to make the health services more patient friendly. How does it work?
The Health System must become more people centred with the interests of the public, patients and clients being given greater prominence and influence in decision-making at all levels
- National Health Strategy,
IT seems so obvious when you see it in black and white, but there is no history of patient involvement in the planning and feedback of hospital or community health services. Until recently, it simply did not happen in any structured way.
Instead, we continue to hear horror stories of how the system has treated some patients - like the family who were upset at not being allowed to sit with their brother the night he died in hospital. Their initial upset has been compounded by the system's inability to respond to the concerns they have raised.
Or the woman with a rare disease who decided to find out more about the condition on the Internet. Armed with information which suggested she had not been fully investigated, she approached her consultant. She felt he was quite dismissive and she was then left wondering whether she had been properly investigated and treated. However, as a private patient, there was no mechanism to deal with her concerns once her initial approach was dismissed.
Other issues may be less personally hurtful but they come up again and again when patients are asked about the health services. Like why a patient with cancer, when he develops post-treatment problems, is often asked to attend the accident and emergency department for re-evaluation. Surely, someone in this situation could be guaranteed direct access to a cancer ward for assessment, even if admission is not warranted.
Or the practice of admitting all emergency patients under the consultant "on-take", regardless of his speciality. Especially when, if he is a gastroenterologist and your problem is epilepsy, the out-patient follow up is with him and not an epilepsy specialist.
The North Western Health Board issued a report on consumer panels last June which put it ahead of other health boards when the National Health Strategy was launched.
In his foreword to "Introducing Consumer Panels at Service Provision Level", the chief executive officer of the health board, Pat Harvey, acknowledged the need for a more structured form of patient representation.
"Ultimately our ambition is that all service areas should have the benefit of a local consumer panel to advise and 'touch base' with. Our service must be patient-centred," he says.
Why bother? Surely once there is an adequate complaints system in operation, patients should leave the "experts" to get on with delivering health care?
Stephen McMahon, chairman of the Irish Patients' Association does not agree: "Any method to help service-providers understand patients is to be welcomed".
He praises the North Western Health Board for its initiative, saying that it is particularly important that the ownership and responsibility for its implementation is with the chief executive officer and the management team.
So how do consumer panels work?
Each panel focuses on a particular area, such as hospital maternity services or speech therapy in the community. A typical one consists of six to 10 consumer representatives, chaired by an independent chairman who is not connected to the health service. In a typical panel of 10 people, six will be randomly chosen from past patients of the service.
THE other two would represent advocacy groups and a further two people might be nominated by the service providers as individuals who would be in a position to contribute effectively to the panel. They will be joined by up to five staff members.
The first of the NWHB panels has just met. In Letterkenny General Hospital, panels on physiotherapy, renal dialysis and maternity services have been set up. Sligo General Hospital is planning a paediatric consumer panel and a men's health consumer panel, among others.
Paul Skinnader is chairman of the physiotherapy consumer panel at Letterkenny General Hospital, which had its first meeting on April 17th.
"The first meeting went well and it demonstrated a degree of commitment on the part of consumers and enthusiasm on the part of service providers to engage in feedback," he says.
But what do doctors think?
Dr Richard Brennan, chairman of the Irish College of General Practitioners (ICGP), says: "I would welcome patient participation in the planning and delivery of the health service. Health care planning must keep the patient as the focus of priority. The ICGP would certainly welcome the active participation of patients in general practice."
But McMahon points out that it would be important to see an evaluation of the effectiveness of the NWHB consumer panels before they are extended countrywide. "By its effectiveness I mean what innovations or reforms they have secured," he says.
Asked what the biggest issues patients face when dealing with the health service, McMahon says the big four are: poor communication between doctor and patient; poor communication between the hospital and the patient; waiting list management (information as much as access) and a lack of dignity and respect shown to patients. (The priorities of the IPA are listed in the accompanying panel.)
He refers to the Irish Society for Quality in Healthcare Report, published in 2000, which showed that 10 per cent of patients undergoing surgery receive no explanation of the procedure and 37 per cent of people who are discharged from hospital had no meeting with a staff member on what to do after discharge.
"This is hard evidence of what patients have been sharing with us for years. The report highlights where the patient charter is failing patients," he says.
The North Western Health Board is to be congratulated for putting a system of consumer panels in place. It is certainly ahead of Action 52 of the National Health Strategy, which states: "Provision will be made for the participation of the community in decisions about the delivery of health and personal social services".
But the real proof of their worth will come when a patient can say: "I raised this issue with the consumer panel. Following discussion with those providing the service we agreed that there was a better way of doing things. The change will be implemented at the beginning of next month".
Only then can we say that patient advocacy is truly part of our health service.
The web site address for information on oesophageal cancer last Monday was incorrect. The correct address is www.lollipopday.com