first person

Published: 16/01/2003, Volume II3, No. 5838 Page 33

The huge gap between the rhetoric and reality of user involvement in the NHS has left Becky Jones feeling incredulous and frustrated In trust corridors around the country, patient and public involvement is the latest buzzphrase.

There is a great deal of talk about shifting the balance of power at every level, but what does this actually mean and how do you go about it? There has been much activity around this subject within my local primary care trust. Unfortunately, most of it has taken place behind doors which, if not firmly closed, are open enough only to allow in familiar public faces who are representative of just a small number of the local community.

Having spent the last 16 months as an area lay member with my local PCT, I do not doubt its intention to push forward with patient and public involvement. The reality, however, is that few health professionals have experience of involving service users, having spent their working lives in an NHS which has never considered it necessary to have a PPI policy.

Anyone with experience of the business sector knows that the customer service policy is the most important one to get right. It requires time, effort and a willingness to involve service users from the very outset. It needs to be driven from the top and be given sufficient financial support. It also requires managers to acknowledge that second-guessing the needs of users is no longer good enough. A meaningful PPI strategy can provide first-hand information that cannot come from within an organisation.

Having come up with a draft PPI strategy, my local PCT organised a half-day workshop to present it to the PCT board, the professional executive committee and a handful of others. There were no unfamiliar faces. It was the strategy's first outing and it was obvious that it had been written by the PCT for the PCT. It was full of acronyms and references to Department of Health publications that the best of us had difficulty following: patient advice and liaison services, commission for patient and public involvement in health, independent complaints advocacy service, patients' forums.

For some in my group, this was the first they had heard of these initiatives. It was difficult to relate what we were hearing to the person on the street or the patient in the waiting room. If an attempt had been made to see things from the patients' point of view, it had been sadly lost in the complexity of NHS structures.

It strikes me as odd that a PPI strategy could be written without consultation with the very people it seeks to include.Why has this happened?

Fear, I believe, and ignorance about how to go about it.Despite rhetoric about shifting the balance of power, there is still huge suspicion and fear about taking the first steps into uncharted patient-led territory.

Staff work in a system where the most common experience of patient feedback is in the form of a complaint. It is not surprising that health professionals view PPI with suspicion and face it wearing a suit of armour.Neither is it surprising if, in response, patients have felt the need to be forceful in their battle to be heard.

Health professionals and patients are dependent on one another, and each has a value which needs to be mutually recognised and appreciated. Power should be shared.

The PCT is unwilling to acknowledge that it does not know how to go about involving the public.

Managers lack the knowledge and skills about how to achieve effective user involvement.There is confusion over the definition of PPI and a resistance to seeking guidance from outside the NHS. Both the business and voluntary sectors have years of experience in this field - neither would have survived without building working relationships with their users at every level.

I have given time and commitment to my local PCT and feel dismayed, incredulous and frustrated.

Dismayed that such a simple task as talking with people can become such a complex issue, incredulous at the obstacles put in the way of this and frustrated that, as member of the public, I have had to fight to make myself heard within the bastion of the PCT.

But an eternal optimist, I am not without hope. I believe there are good intentions and pockets of best practice on which to build.

Attending the strategy presentation workshop proved my final duty as a lay member.A day earlier, my PCT had informed me that, in view of the new strategy, my role was no longer considered relevant and my contract would not be renewed.The irony of the situation was lost on all but myself.As I slipped out of the door, I left the professionals centre-stage discussing how to ensure that involvement was a meaningful and fulfilling experience for members of the public.

Becky Jones is a former area lay member of a primary care trust.