Published: 30/05/2002, Volume II2, No. 5807 Page 27
It is a dull day in Harlow. I am sitting at my desk contemplating patient and public involvement.
It is close to two years since the government's decision to abolish community health councils and replace them with other methods of public involvement. During that time, our CHC has debated the rights and wrongs of this decision, and the ways successor organisations could improve the system.
I welcomed the changes to NHS culture proposed in the NHS plan and supported the view that the involvement of patients and citizens should be firmly embedded in the service. But recent experiences make me question the wisdom of imposing this on a system that does not appear to have the skills, or the knowledge, to make meaningful involvement a possibility.
Public involvement is specialist work and requires more than good intentions. The NHS in this area has a strong commitment to involving patients and public at all levels of decision making. There is identifiable good practice, particularly in mental health. But on the whole, my experiences have been poor.Despite the NHS's goodwill, there appears to be a lack of awareness of the issues. True involvement must address power issues, and health professionals must grasp the fact they have to relinquish power.
Giving up power is a difficult thing to do.How many NHS staff understand the benefits of handing power over to patients and the public?
The experiences in question are not unique to the trust concerned, with whom we have worked constructively on patient advice and liaison services and public involvement - it is endemic in our local NHS. For some time, we had worked together to establish a patient panel. The group had been formed by the trust and the CHC, and a range of people were represented.We were particularly pleased to welcome younger people and individuals who wished to be involved but had not come forward before.All the ingredients, it seemed, for a constructive dialogue.
But in my opinion, the trust concerned blocked any possibility of equal engagement at every stage.
And I realise it did not engineer this. One meeting in particular brought this home to me and made me question the NHS's ability to involve people, despite the undoubted good intentions.
If you wanted to involve people, would you hold an event on a hot night in a cramped room with no windows and chairs in rows, facing the front?
Would you later book a room inaccessible to people with mobility problems and have to change the venue to a corridor, again with chairs in rows facing the front? Would you set the agenda?
Would you ensure that a discussion document as important as Involving Patients and the Public in Healthcare reached the group speedily, or would you post it a few days before the closing date for consultation? Would you hand out tea in polystyrene cups? Would you ignore the brief you have been given by the group and try to bring in the agenda of your organisation?
The NHS seems to think that giving information is equal to involvement. I was at a meeting with another trust, which members of the public had asked for to discuss specific issues. Instead of doing this, the trust talked about its plans, informed the public about its issues and ran out of time.The public felt they were talked at, but the trust viewed the meeting as sound involvement.Too often, what could be genuine power sharing ends up being a public relations exercise for the NHS.
The worst thing about this particular meeting was the expressions of the audience. People started the evening keen to be involved, but as things went from bad to worse they became frustrated and angry. I was so embarrassed that I left.
Since that evening, we have made positive headway in piloting a patients' panel, which will shortly begin monitoring the trust's services and develop good practice protocols. But this work has been led by the CHC, independently of the NHS.
I question whether any genuine involvement can be led from the inside.The proposed changes will create structures for involvement. But these will only work if the system empowers people to use those structures.Mistakes like the ones at these meetings have consequences. Several enthusiastic individuals did not come back.Those who remained developed a high degree of scepticism regarding their ability to influence things.
A top-down approach may be appropriate at times, but this sort of change can only make sense if there is real engagement with the public.The vision outlined in the NHS plan cannot be realised by imposing structures on a health service that is not ready for them and a public that is cynical and disempowered. l Fiona Whittaker is chief officer, West Essex community health council.