Question: The 'Our health, our care, our say' white paper sets out a vision for a stronger voice for the public to effect change in health service and social care when needed. What is your reaction to this?

Sharon Grant: So far as the issue of public involvement is concerned, we were excited that it has warranted such a high profile in the white paper.

It long overdue for patient and public involvement to be a high priority issue.

Having said that the devil really is in the detail here, and this case it is the lack of detail which is rather worrying.

We would have liked to have seen far greater clarity about how this vision, of the public having more control and drive, which is what is meant by a ‘stronger patient voice’ is going to be achieved.

There are two aspects to how this greater public involvement could be realised:

The first is about encouraging providers of healthcare and those who commission and pay for health and social care to involve patients and the public in all that they do.

There are some very good things in the white paper about requiring NHS trusts, PCTs and local authorities to adhere to their responsibilities to involve the public and users in important decisions.

On the other hand there needs to be an independent infrastructure so that the public is able to express a collective view and develop a collective relationship with the NHS.

That is what we feel is missing and needs to be dealt with very urgently.

Question: The Commission for Patient and Public Involvement in Health has only been in existence since 2003. What have you achieved in that time and what lessons have you learned?

Sharon Grant: We have demonstrated there is a clear appetite amongst the public to get involved in important decision-making about their local health services and improving public health.

We have set up the first ever independent national system for involving patients and the public through over 500 separate forums, one for every PCT and trust and recruited several thousand members to join them.

What this shows is that members of the public are keen to become involved in decision making around health.

There were people who expressed doubts about that and said that we would never be able to recruit this number of people.

We did do it however, without a great deal of difficulty, and we have been able to maintain forum membership at the same level.

An important lesson we have learnt is that local and national government and health service bodies need to be very clear to members of the public about what the ‘terms of engagement’ are, ie. explain exactly what Patient and Public Involvement is and what people are being asked to do.

At times there have been some difficulties and lack of understanding caused by the legislative framework within which we are required to operate.

Furthermore we have seen that involvement costs money. It doesn’t come for free. The public have to be given the resources to become effectively involved.

Question: The government mentioned progress made by patients forums in the white paper, but did not say how PPI forums will operate in the future. What role can forums play and how could they be strengthened?

Sharon Grant: The Commission has a clear view and we have made suggestions to the Department of Health about how we see the future.

I think the future lies firstly in achieving greater clarity about what we want public involvement to be for.

Our view is that the real purpose of public involvement is to bring accountability into health and social care services, which has not been the case in the past.

If that is what the government are trying to achieve, then it must maintain independent structures which are separate from the commissioner and provider interests in health so as to truly bring the collective view of the public to decision making.

We need to have a system which is able to involve much wider numbers of people at a local level in health and that has been difficult under the system which we were given to develop.

We also need to try to break down some of the barriers between health and social care when it comes to involvement structures.

There is a proper debate to be had now about how the current system can be developed into something stronger and we look forward to being a party to that debate.

Question: How would you like to see the system evolve?

Sharon Grant: We would like to see the forums becoming part of much wider local networks in which they liaise much more closely with other organisations and groupings in the voluntary sector and elsewhere who’s concerns touch upon health.

And that we would be able to make the existing public involvement activity more co-ordinated and more effective in terms of achieving change than it has been able to be up to now.

There is an awful lot of activity which goes on today which one could describe as public involvement but people are doing separate things in separate silos.

Everything could be done that much more effectively and usefully if it were more coordinated and better supported.

Question: The Commission raised some serious concerns with the health select committee about consultation arrangements on PCT reconfigurations. What were these and how could problems be avoided in the future?

Sharon Grant: In short, the problem we saw was that large numbers of our forums up and down the country felt that they had not been meaningfully consulted about major changes in the configuration of the NHS at a local level. Namely merging PCTs and strategic health authorities etc

Forum members where concerned about this and we believed that the duty which the NHS has placed upon it, under the Health and Social Care Act Section 11 duties to involve the public, had just been ignored by the NHS.

Where there was consultation many forum members said that that consultation happened after a decision has been made rather than before it.

Consultation has to be meaningful and not just an afterthought. And it can only be meaningful if the views that people express during consultation are actually taken notice of.

If the public’s views are being ignored then it is not a good advertisement for public and patient involvement and it doesn’t encourage people to want to be involved in consultations in the future.

Question: How would you like parliamentarians and other stakeholders to get involved in the debate both locally and nationally?

Sharon Grant: We have encouraged MPs to develop a relationship with their local forum. Although forums are still only three years old many MPs have done already, and that is good for both the MPs and forums.

Forums can help MPs to stay in touch with what is going on at local level. Moreover, forums feel that their work is valued if they have a relationship with local MPs.

We would like to push the issue much further up the agenda of many MPs, not least because we are seeing seismic changes within the NHS at the present time and they are changes which entail the individual patient having a great deal more leverage and being seen as a customer of the NHS.

We think it is very important that the public should have a relationship with the NHS as citizens as well as consumers.

There will be legislation very soon because the government has announced that our commission will be abolished and needs to legislate to do that. Any new infrastructure for patient and public involvement will also require primary legislation

We want MPs to scrutinise the forthcoming Bill very carefully to ensure that whatever new system is proposed for patient and public involvement in the future it is independent of decision-makers and promotes genuine involvement of the public

The Act under which we were established was very controversial and it was not altogether clear what role parliament wanted the commission to play.

There was also a lack of understanding about the scale of resources would be required to put in place effective patient and public involvement systems.

We would like the new legislation to resolve these problems.