More than a rubber stamp: the Patients'Cancer Council The Patients'Cancer Council consists of patients, carers and health professionals and has been running at Leicester Royal Infirmary for the past four years.
Among its achievements during that time have been the production of a patient booklet - now in its third edition - about all aspects of cancer care, the introduction of patient-held records and the planned establishment this autumn of a patient information centre in the hospital's main reception area.Kate Nahorska, a former patient who has been on the council for the past year, says the siting of the centre in the foyer was critical because the council's research indicated that location could make a 12-fold difference to patient uptake.But the decision was only reached after arguments with clinical staff.
'One of my biggest concerns is that I am not a token patient, 'emphasises Ms Nahorska.'I refuse to be used as a rubber stamp.'
She also prompted a rethink when the trust proposed sending patients their breast scan results by post rather than via the GP, pointing out that this would be a dreadful way of receiving news of a positive scan.
'Sometimes I feel the people planning these things just do not consider the patient's point of view.'
She and other patients are also pressing for action on the chronic car-parking problem in the hospital - even though they have been told this is beyond their remit.'The fact is, these are the concerns of many patients and they have to be addressed.There is no reason why we should have to stick within the limits of what they want us to stick to.'
Having said that, she is full of praise for the responsiveness and enthusiasm of staff who sit on the council, as well as the positive approach of most patients.'I had the idea it would consist of moaning members of the public and reluctant staff, but It is not like that at all.'
In fact, her biggest frustration is that it is so difficult to recruit patients and carers to sit on the council - often the staff outnumber the patients.
Patient information co-ordinator Sandy Geddes says the council is very influential.Its deliberations are fed through to the cancer commissioning group, which reports directly to the board.'I am sure It is changed professionals'outlook, 'she says.'For far too long, they thought they knew what was best for the patient, but it wasn't until they actually asked patients what they thought that they realised they didn't always get it right.'
Crucially, the council is strongly backed by the chief executive and the lead clinician is a sitting member.'I've never been in a group like it where you really feel they are making a difference.It can be scary.If you promise them something, then you know you have to deliver or there will be repercussions.'