Sharon Grant, chairman of the Commission for Patient and Public Involvement in Health, tells ePolitix.com of her concerns about the Local Government and Public Involvement in Health Bill.

Question: It's the second reading of the Bill on Wednesday, so could you just frame the context of the Bill in relation to your organisation?

Sharon Grant: The Bill is planning to replace the current arrangements for patient and public involvement in public health. Currently we have the Commission for Patient and Public Involvement in Health (CPPIH) which I chair, which was set up on the 1st of January 2003, to replace the Community Health Council System.

It was our major job to set up almost 600 Patients and Public Involvement Forums, one for every Primary Care, Mental Health, Ambulance and NHS Trust in England, and to support them in their work of encouraging public involvement in the NHS and allied services across the broad.

Now the Bill is proposing to scrap all of this, after a considerable amount of expenditure and work, and replace it with a new system at a local level, known as Local Involvement Networks (LINks). There will be no national body, and the Commission will be abolished along with the Forums we created. These will be replaced instead with some 150 LINks at the level of local authorities, some of them covering areas as large as a county or an entire metropolitan district. LINks will be charged with reflecting the views of the public on all that is done by the NHS and in social care.

Question: What do you think will be the biggest effect on the NHS of the new LINks system, and the loss of a national body like yours in this area?

Sharon Grant: Well, we are looking at the whole question of the extent to which patients and the wider public as citizens are able to influence health decision making. In our view, this position will be substantially weakened as a result of these new arrangements if the bill goes though un-amended and we have made this clear for some time.

Since our last discussion with ePolitix.com there has also been a very substantial and hard hitting report published by the health select committee which has born out a lot of the problems we had already highlighted and in a phrase it describes the new system as ‘vague and woolly’ and ‘lacking definition and structure’.

Question: That's what the select committee say, but what do you and the Commission have to say?

Sharon Grant: Well that’s what we say as well, but we have been saying it for rather longer and in a little more detail.

Question: Why has the government decided to put this Bill through now?

Sharon Grant: Well I think that’s the question a lot of people want to have answered. For the 5,000 or so Forum members, us at the Commission, and to many outside observers, it seems to make very little sense to scrap what we have, and to start again on another page. The real answer has to be to build on what we have, rather than to start again. Yet no one has really given us a satisfactory reason why this is being done.

The original decision to abolish the Commission was made in the context of the Review of Arms Length Bodies back in 2004, when it was decided that there were too many of them, particularly in health, and that some of them needed to be dispensed with. But why the only body that represents the public in health should be the one to go, we have never really been able to fathom.

Question: Do believe that you as an organisation have really achieved much?

Sharon Grant: Well I think the backdrop to this is that patient and public involvement is a difficult agenda.

We are talking about a whole culture change in health, an area which has historically been controlled in a very hierarchical way by the medical profession, by health service managers of various descriptions. So to suddenly say to the public we want you to share in those decisions, we want you to be part of the process of prioritising and arriving at decisions about large amounts of money, and particular types of treatments, that is not a message which is easily got across to the public and one that is even more difficult to operationalise.

We have always said that with our organisation it would take five years to get the system established and for us to show what it can do. I think we were right in that assessment.

The Forums are now established and are delivering very interesting work at both local and national levels with real and tangible results. We would argue very strongly that they ought to be allowed to continue to do that, and we are extremely upset at the prospect of the Forums being abolished.

Question: Well it must be very demoralising for those that have given so much of there time and got involved? I am not just talking about you as an organisation but actually patients and citizens as well.

Sharon Grant: Well, it is not always easy to get members of the public interested in volunteering for public services and even harder to sustain their involvement. However we have managed to recruit large numbers of people to Forums across the country. Our task has been made more difficult because of the inconsistencies in message from the Department of Health.

The Commission had only been established six months when it was announced it would be abolished. We are now on our sixth abolishment date and most Forum members have a file full of letters asking them to stay on for a little longer. This is not the way to foster public involvement or show respect for those people who are prepared to give substantial amounts of time to improve public services.

Question: You mentioned earlier that there would be no national body if the government Bill goes through, what would be the danger there for patients and the public in general?

Sharon Grant: Well, there are a great many things which are best done at a central level and most economically effectively done in this way.

To begin with, it is important that whether it is a Forum or a LINk, there is proper governance of the organisation at the local level, that it is clear how decisions are made and that they are made democratically. It is also vital that if these bodies are falling down on these issues, there is some kind of a grandparent body to say that this is not up to scratch and to find ways to govern their arrangements properly. So there is a minor policing role to be done, if you want to put it that way.

Also, at a central level you can most economically provide training, particularly in less generic issues, and ensure that the different parts of the system can communicate with each other. Under our present system we can put a kidney patient in Carlisle in touch with one in Cornwall, and other people with similar problems and issues. There are not just geographical communities but also communities of interest and our system can put these people in touch with each, enabling the Forums to communicate with each other about good practice and to share experiences. It can also help to organise and coordinate things on a regional level. We all know that a good many decisions in health are taken on the regional level.

Most importantly though, a central organisation is the guardian of the independence of the local patient and public interface, you’re talking about patients struggling to find a voice, against some very powerful interests in health, particularly those of NHS management, of Boards, and of Professional Executive Management Committees. Health can very easily be captured by these interests at a local level if there is not a central entity which is independent of the government and other vested interests, which can supports Forums or LINks as they may become, in their tasks of representing the public interest in health.

Question: How optimistic are you that the bill be substantially changed to ensure your survival?

Sharon Grant: Well, we just don’t know. We have always said that this is not about securing the future of the Commission, it is about securing a healthy future for patient and public involvement. We know there are a number of peers who are taking a considerable interest in the Bill and who are looking at a number of amendments around the various issues I have described to you. How this will come out the other side of the Lords, well that depends on their lordships and we will wait with interest on the results of the next few weeks.

Question: Do you have any specific message for the Lords as they are deliberating?

Sharon Grant: I think there are some very serious issues around resourcing the new system. If there is one thing we have learnt in our lifetime at the Commission it is that if you are serious about involving the public it simply does not come cheap. If you really want to empower both patients and the public against considerable vested interests in health, you have to support them. There has to be paid staff to do a lot of the running around and administration you also have to pay peoples expenses, particularly those in rural communities who have to travel some distance, this costs money.

Yet if you set all the expectations for these new LINkS against the resources that the department is saying will be available, it really does call into credibility the prospects of the new systems. We believe that per county these LINks might get something in the region of £160,000, and that is not a lot really. £160,000 may buy you an office and a couple of staff, but how those couple of staff will ever begin to represent the views of patients and the public, who may be getting services from several PCTs in the county, scores of GPs and several acute hospitals, it really does not stack up and that is very worrying for the future of this agenda

Question: So you're really asking ultimately for the government to think again and if not you’re asking the Lords to make them think again?

Sharon Grant: Well that is what we have said, and we have been straight forward in saying that from the outset. We don’t think this is the answer, we think there is room for change, but this direction of travel does not fill one with hope about the empowerment of patients and the public in the future.