Select Committee on Health Third Report

4  Local Involvement Networks

The Local Government and Public Involvement in Health Bill

98. The Local Government and Public Involvement in Health Bill gives effect to the Government's proposals for reform of the local government system in England and for reform of the current arrangements for patient and public involvement in the provision of health and social care services.[89] Part 5 of the Bill seeks to improve co-operation between local authorities and "local partners", including "persons from the voluntary and community sector and local businesses". Together they will come to Local Area Agreements, which include local improvement targets, and agree community improvement strategies. The Bill also seeks to strengthen Overview and Scrutiny Committees (OSCs) which, as we have seen, scrutinise the health service as well as local government. Thus, greater public engagement in local government is proposed to complement the changes to PPI arrangements within the NHS.

99. The Bill abolishes CPPIH and PPIfs and replaces PPIfs with LINks. PPIfs are to be abolished before LINks are established. The Bill provides some information about LINks, including their:

• functions
• duties
• powers
• relationships with other organisations
• support organisations

However, there is little detail as we discuss below.

Functions

100. The Local Government and Public Involvement in Health Bill gives the remit of LINks as:

Promoting, and supporting the involvement of people in the commissioning, provision and scrutinizing of local care services (including health and social services) obtaining the views of people about their needs for and their experience of local care services And making such views known and reports and recommendations to persons responsible for commissioning, providing managing and scrutinizing of local care services.

RESPONSES TO REPORTS AND INFORMATION REQUESTS

101. The Bill provides that NHS bodies or in the case of social care, the Local Authority, must respond to LINks' reports or requests for information. The independent sector (including the private and voluntary sector) will have to respond to requests for information but not to LINks' reports or concerns about their services.

POWERS: RIGHT OF ENTRY

102. The Secretary of State may impose a duty on service providers to allow an "authorised representative" entry. The Secretary of State has the right to limit the numbers, and "description of" visitors, and the hours during which they can visit. The Secretary of State has the right to impose restrictions on which members of the LINk can be authorised representatives, and in what circumstances the duty to allow entry applies. The Department stated in written evidence to the Committee that members would need criminal records checks and LINks would not be allowed entry to facilities providing social care to children.[90] Draft documents supplied to us by the Department indicate that the Department intends to extend this duty to the independent sector by insisting on the requirement in their contracts.

RELATIONS WITH OVERVIEW AND SCRUTINY COMMITTEES

103. A LINk has the power to refer social care matters to the Local Authority's OSC. The OSC must acknowledge receipt and keep the LINk informed. While it is obliged to take account of the information supplied by the LINk, it can decide whether or not to exercise any relevant powers it has. The Department has told us that LINks will also have the power to refer healthcare matters to the OSC, but there is no reference to the power in the Bill since it does not require primary legislation.

DUTIES: REPORTS

104. The LINK must produce an annual report detailing their activities, how they have spent their money, and "such matters as the Secretary of State may direct".

SUPPORT ORGANISATIONS: HOSTS

105. The Bill places a duty on local authorities to set up a 'Host' to run a LINk. The role of a Host is similar to that of a Forum Support Organisation, the bodies which support PPIfs. The Bill also states that Hosts, Local Authorities, NHS trusts, foundation trusts, PCTs, and SHAs cannot be LINks.

LACK OF DETAIL

106. The lack of detail in the Bill about the form of LINks or Hosts has been much criticised. There is no mention of membership, organisational structure or of how LINks will be made accountable. The Department did provide the Committee with draft documents relating to Local Authorities' contracts with the Host, and on their powers of entry and to request information. However, the documents also indicate that the Government will consult about these powers, so the details will not be finalised until after the Bill has received Royal Assent.

Early adopters

107. There are nine 'early adopters' or LINks pilots. Two are run by the Healthcare Commission and seven by CPPIH.[91] The pilots started in December 2006. Inevitably, therefore they have had no input into the Bill and presumably very little input into the any guidance now being drafted.

108. On our visit to Medway we met Stephanie Goad and Jessie Cunnett from the early adoptor project there. At that time they had had one meeting but had not decided whether to set up a LINk; further meetings with stakeholders were planned to decide what to do. They were discussing membership, structure and governance. After this consultation they might or might not go on to set up a 'shadow' LINk. When we asked about evaluation criteria we were told that the evaluations of the projects were being carried out formally and were being lead by the NHS Centre for Involvement and Office of Deputy Prime Minister. The project did not have a fixed budget, but was supplied with money as needed, for example to hire a venue. The people running the project did not know if there was a cap on the money they could spend.  The project was being run by staff from CPPIH. There was therefore no Host organisation. Difficulties with contracting Host staff, accountability and conflicts could only be discussed rather than trialled.

109. We subsequently questioned Meredith Vivian about the 'early adopters'. He told us:

They are not pilots; pathfinders might be a better word. They are testing out ways of working. All of them have been given a set of objectives which are asking them to focus on particular aspects. The Minister has mentioned one, what would make an effective governance arrangement, and others include how we can make sure we reach as many people as possible and are as engaged as possible with voluntary community sectors, how we can make sure that what we do is well-known in terms of communication and visibility, and there are other issues around how we can make sure the procurement process is as informed as possible.[92]

He added that these groups had been given a set of objectives by which they could be judged.[93] The early adopters will be evaluated, but the evaluation process cannot begin until after April when a baseline is to be established.

110. Mr Vivian stated that pilot studies had not been set up because the Department wanted LINks to start work soon, rather than having, "to hang around for a long time waiting for instructions as to what we do next".[94]

111. We welcome the 'early adopter' projects, but we are concerned that they are taking place after the Bill has been published which means that LINks cannot be evidence-based. We are also concerned that the Department is drawing up guidance before 'early adopter' projects have been evaluated.

112. The 'early adopter' projects appear less an objective trial than a discussion with stakeholders, and a key point—what can be expected from Hosts—is not being addressed. We recommend that there should be full trials of LINks to assess practical requirements for running them.

113. There is no fixed budget for each 'early adopter'. At Medway money is being supplied as it is needed. This is symptomatic of the Department's failure to focus on what LINks will realistically be able to accomplish with the resources available to them. We recommend that the 'early adopters' should be given the same budget LINks will have once they start so that it is possible to establish what can be achieved with the money that will be available.

What Local Involvement Networks should do

114. The lack of detail in the Bill has led to confusion about what exactly LINks are supposed to do, and what form they should take. Witnesses to the Committee had very different ideas about what form LINks should take. Broadly these ideas fit into two models:

• The 'PPIf Plus' model
• The 'Network' Model

Most witnesses saw LINks are having elements of both models and thought the Department had changed its position, moving away from the 'network' model, forming what might be described as:

• The Department's Model.

THE 'PATIENT AND PUBLIC INVOLVEMENT FORUM PLUS' MODEL

115. One model for LINks is similar to the best practices of PPIfs. In this model a core group runs the LINk. They make decisions about the LINk's activities, can sit in on trusts' boards and meetings, and undertake surveys or visits. They produce reports and challenge trusts if they are unhappy with the response. Members of the core can develop expertise on NHS issues and personal relationships with NHS managers and organisations.

116. They would also do everything they could to connect with local groups and find out a wider public view. Elizabeth Manero of HealthLink told us why she supports this model:

I totally accept the principle that there should not be an elite of people in the local community who are able to influence the Health Service and others who are not. That is a principle which I think we would all acknowledge but with LINks, the proposal is to have a very, very large, "perhaps thousands of people", involved in the Health Service. My worry about that is that it focuses on a process; it focuses on broadening a process rather than refining an outcome, because if you have thousands of people all saying the same thing, I am not quite sure why that is better than having a very focused approach, with a number of people who are trained and supported, one of whose obligations is to go and consult more broadly in the community. If a smaller group of people can achieve something that everybody wants, I am not quite sure why we need everybody to be involved in the process.[95]

117. Several witnesses informed us that this was what good PPIfs do already. Barrie Taylor of Westminster City Council OSC told us:

Dr Taylor: Would you agree as a sort of design idea with Elizabeth's idea of a central group that feeds out into the others as a way to go?

Mr Taylor: Yes, but let us not fool ourselves as to what exists already. Honestly, I just think there is already a large amount of that going on.

Dr Taylor: This is exactly what PPIfs are doing at the moment, is it not?

Mr Taylor: That is right. We cannot ignore that. That is really good work.

Dr Taylor: The good PPIfs have already formed their own LINks.

Mr Taylor: Of course they have, yes[96]

THE 'NETWORK' MODEL

118. The second model sees LINks as a 'true network'. Someone facilitates or runs the network, but there is no real core. The concept of membership does not really apply. Anna Coote of the Healthcare Commission was a powerful advocate of this model:

rather than the LINks being there in the community, saying, "We are the patient voice. Come to us. We can speak for the patient in the community", they are a network, a sort of junction box or a sort of facilitative mechanism, so it is not quite the same process as just going to the forum and saying, "Tell us what you think", because we will need to know that the LINk has actually brought in the views of those organisations that are part of that network and I think that makes it more inclusive…. I feel the virtue of the LINk mechanism is that it is not a kind of entity in itself, a body that feels it speaks for the community.[97]

119. While several witnesses to the Committee agreed with the idea of a network, Anna Coote took it further than most by arguing that they should not have statutory powers:

if you say the LINk can inspect, who is going to do the inspecting? If the LINk is a network, it is not really a body that is designed to carry out an inspection, but it is a body that is designed to identify, and provide a conduit to, all the interest groups in the community, say, an open invitation to participate in follow-up enquiries as part of the regulatory process[98].

120. This model moves away from people speaking for others, but it sees LINks as very passive organisations which the NHS has to make an effort to involve, thereby forcing the NHS to actively engage with the public.

I have always seen the LINk not as a body with independent rights and status, but as a facilitative mechanism, as a conduit, so that it is the place where the trust goes in order to be able to reach out to the community. Then the duty is on the trust to ensure that it has good relationships, that it does listen, that it does respond, and it is the duty of the Healthcare Commission to make sure that it does that.[99]

…part of the idea of LINks is that it is really a permission slip to open up ways to involve people. Responsibility must be on the providers to open the door. If the door is shut it is very hard for people to be heard at all. The duty must be there and there must be an inspection of the extent to which they are involving people and that involvement makes a difference.[100]

The best thing I can say is that, if LINks are working well, …, a sort of amorphous, dynamic creature, well, it is drawing information from a whole series of areas which, within the provider area, we may not have access to, so, for me, the best thing is to be able to tap into another resource that has got antennae going all over the place.[101]

121. The Bill also provides for LINKs to refer matters to OSCs which would hold inquiries and publish reports. This opens the way to LINks to feed their concerns into the OSC to investigate rather than undertaking investigations themselves.

THE DEPARTMENT'S POSITION

122. Over time the Department has released more information about its plan for LINks. It now appears that it is taking a position part way between the two models. On the one hand Meredith Vivian talked about patients representatives;

My guess is that LINks will probably support that way of working (patient representatives sitting on boards) even more effectively because they will have a far wider range of people from which it can draw that kind of additional activity.[102]

On the other hand, Harry Cayton, the National Director for Patients and the Public at the Department of Health, told us:

It gives the patient participation group (active in many general practices) the ability through the LINk to speak with a united voice to other practices that have some experience of commissioning across the whole system. We talk about networks. All we are doing is helping to create networks where people are empowered. We know from all sorts of community action that little groups of people get together and the more they do that and form larger groups the more influential and effective they become, and that is how community action works.[103]

Rosie Winterton MP, the Minister of State, confirmed that LINks would be a mixture of the two models.

123. The Department was, however, reluctant to talk about 'membership' of a LINk. This and the focus on 'dipping in and out' implies that the Department is closer to the network model, with only some elements of the PPIF model. The draft documents supplied to us make this clear:

The governance structure should always seek to involve and communicate with the wider LINk membership in all its activities. It should not itself act as a consultative body or speak on behalf of the LINk without its involvement and consent.[104]

124. Whether this approach represents the best of both models or some confusion is unclear. We have heard from Sharon Grant of CPPIH that the Department has certainly changed its position in the long term:

We wanted to build something which we called "Our Health", which involved a group of people around the forum, who were not forum members but who nevertheless wanted to be involved in some of those aspects and they could be formally belonging to this link. At that time that proposal was pretty much rejected by the Department as not being the direction of travel that was required at that time. We were not resourced to develop that at that time but now it seems the emphasis has shifted back to this idea of networking.[105]

125. The Department seems to have changed its position again more recently. Anna Coote told us that the Department was originally planning a 'true network', but this has since changed:

One of the important ideas behind the shift towards the LINks was initially—I do not know if this has got lost—the idea that, rather than setting up an "us and them" arrangement, one emphasised the point that trusts themselves should take their responsibilities seriously to engage with patients and the public and that they should be the ones that really felt it was their duty, that they did not just have to respond to a body that was there in the community but that they had to do it, they had to make it happen and it was very important not just because it was a good thing in itself but it was actually good for them to achieve their objectives as providers of healthcare.[106]

126. As there are still many aspects of LINks about which the Department has yet to provide information, it is hard to tell how far the Department's view has changed. It should, however, be noted that the original proposals did not include a right of entry, but this has since been included, which supports Anna Coote's view that the Department is moving away from the network model.

Concerns

127. Some witnesses were optimistic about the reforms, but there were concerns about all three models for LINks.

CONCERNS WITH THE 'PATIENT AND PUBLIC INVOLVEMENT FORUM PLUS' MODEL

128. It is feared that the PPIf plus model would have many of the weaknesses of PPIfs, which were described in the previous chapter: PPIfs were often unrepresentative and failed to attract volunteers; because NHS bodies were able to fulfil their PPI responsibilities by meeting the PPIf, a tick box culture was encouraged and wider consultation was discouraged; and the PPIf system was bureaucratic and poor value for money (although the abolition of CCIPH might largely remove this objection).

CONCERNS WITH THE 'NETWORK' MODEL

129. Witnesses also had a number of worries about the 'network' model:

• It will be less effective at holding the NHS to account;
• It will duplicate networks which already exist; and
• Involving a network of groups means that, by definition, it involves those who already have a voice.

Holding the NHS to account

130. The aim of LINks is to collect the views of a large number of people, but this could have disadvantages, in particular a loss of focus:

with LINks, the proposal is to have a very, very large, "perhaps thousands of people", involved in the Health Service. My worry about that is that it focuses on a process; it focuses on broadening a process rather than refining an outcome, because if you have thousands of people all saying the same thing, I am not quite sure why that is better than having a very focused approach, with a number of people who are trained and supported, one of whose obligations is to go and consult more broadly in the community. If a smaller group of people can achieve something that everybody wants, I am not quite sure why we need everybody to be involved in the process.[107]

We are a small forum. On the other hand, I think being a small group makes us more effective in many ways in that we can work together effectively.[108]

The more time a LINk spent reaching out to the public, the less time it would have to scrutinise the NHS, compile reports and hold trusts to account for their actions. PPIf members told us that this was the type of work that produces results:

It really is very difficult for anyone to see, if it is going to involve thousands of people, how it is going to be organised. It will put a greater burden on the support organisation than there is at the moment. The wider you go I think the more disseminated, dissipated, the whole effort is going to be and there is not going to be the room for the close focus that is the only thing that produces results.[109]

the proposal I put to our forum which was adopted was that each member takes responsibility for a certain number of briefs and studies them, and is accountable to the rest of the forum for what he does in that area. That allows us to go across the breadth of the PCT and deep down into it because all of us cannot go, for example, to all the meetings of the Nursing Improvement Committee or the Urgent Care Committee, or whatever.[110]

131. If LINks were to operate effectively as a 'network', NHS bodies would have to come to it to find the views of the public. One of the potential strengths of the network model is that it forces the NHS and providers of social care to be more proactive. Since there are no forum members to sit on boards and no forum which can be easily consulted, NHS bodies must make the effort to consult the wider community. However, this is also a potential failing. As we discuss in more detail elsewhere in the report, many witnesses thought that NHS organisations talked enthusiastically about PPI, but in practice many were not committed to it. If an NHS organisation chose not to make the effort to consult, there would little pressure on it to do so.

Duplicating existing networks

132. On our visit to Medway we heard that the Council had established a network of voluntary bodies which it consulted on a range of issues. There was a danger that the LINk would just duplicate this network. Other witnesses informed us that an existing network could become a LINk and receive its allocation of funding. Barrie Taylor of Westminster Council Overview and Scrutiny Committee told us:

I have a little bit of concern from the local authority point of view that what we might be putting into place is something that I think currently exists in a good format within their terms, and if you look at the evidence I have presented, you will find a series of agencies that are already in forums, are already in networks and they are very targeted. My worry is that what is likely to happen is that some local authorities may well find this government initiative and ability to try and form a LINk, fund it and you may well find that local authority reviews how it is currently working with its existing structures with the voluntary sector. So if, for instance, the monies that have been floating around, which is about £150,000 for LINk, a grant—I believe it is a three-year grant that is being proposed—what you may well find then is local authorities reassess whether or not they are actually funding those other networks that currently exist. That is a reservation. It is not the way forward, obviously.[111]

A voice for those who already have one

133. Witnesses also expressed their concern that a network would amplify the voice of existing organisations, but ignore the opinions of those who were not represented by an organisation.[112] LINks would tend to seek the views of patient groups while ignoring the opinions of other groups of people such as healthy, working people. This is a group which the NHS is already unresponsive to; for example doctors' surgeries are mainly only open during working hours.

134. In some areas there are likely to be few organisations to participate in a LINk or those that exist may be short of money or have few volunteers:

Where there are few community development organisations in a locality, there is only a limited prospect for a meaningful LINks to emerge. While it is vital for LINks to retain their independence, it is also vital for the voluntary sector locally to be properly funded and supported in order to support the development of LINks.[113]

CONCERNS WITH THE DEPARTMENT'S MODEL

135. As well as the problems with the two different models, we heard a number of additional concerns about the Department's plan to combine them, including:

• Trying to do the work of both models will result in too much work (and much of that work will be duplicating that of other bodies);
• There will be considerable variations between LINks; and
• The lack of clarity will confuse volunteers, the public, Hosts and local authorities.

Doing too much

The scale of LINks

136. A major risk with the Department's model for LINks is that they could end up trying to do too much. We received a considerable body of evidence pointing out how difficult it would be to run a network on the scale of a LINk.

I believe LINks could be good because you are going wider and you are going to be looking at different sectors, more of the voluntary sector. My only worry is it could be too big and not manageable. If you take a county and bring all of the voluntary sector in, it could be unmanageable. I hope it is not but that is my biggest concern.[114]

there would be one LINk for Hertfordshire. How many people? Over a million people. There are two PCTs, six or seven trusts and another 20 or so independent hospitals, 186 GP practices, and the LINk is supposed to be able to collect the views of all of those people, a million people in that particular county, about their needs, about their experience of all these services and to be the main conduit whereby all those views should go back to commissioners, to providers and, importantly, the regulator. At £150,000 apiece, it is very hard to see how those tasks could even be attempted, to be quite frank with you, and it is very important that people understood understand the scale of what LINks are being asked to do.[115]

137. Yet the Department has also made it clear that as well as running an extensive network, LINks would continue to undertake the work PPIfs currently do, including:

• Questionnaires and surveys;
• Community / citizen panels;
• Consultation and involvement workshops;
• Focus groups;
• Events and campaigns;
• Meet, listen to and record the views and experiences of local people.[116]

[source: draft document supplied to us by the Department]

In addition the Department wants LINks both to focus more on overseeing commissioning than PPIfs do currently, and to cover social care.

Duplicating the work of foundation trust Boards of Governors

138. Several witnesses expressed fears that were LINks to focus on service delivery (as many PPIfs do now) they would duplicate the work of foundation trust Boards of Governors:

Sandra Gidley: It sounds to me as though LINks will not have much impact on what you do?

Dr Day: Frankly, it will not. I do not want to make that too much of a negative comment because we have a very good patients forum and I would be very sad to see that disappear. If LINks is its successor body then let us grab, as I have said in my evidence, the very best of the Community Health Councils and the patients forums and put those into LINks and build on it. Let us not reinvent the wheel. Let us grab what we have got which is good.[117]

He continued:

I am going to sound like a cracked record because most of what I have heard from a lot of people this morning is a function of the foundation trust, of the board of governors and I am struggling because I am trying to think of what added value I can look for.[118]

Nigel Edwards from the NHS Confederation made a very similar point:

we have all been very taken by how foundation trusts and their governors and members have really taken that model perhaps to some extent to a level of involvement and engagement that was not fully anticipated by some of us when the policy was first introduced. So there are other dynamics as this process is evolving other than just the LINks. The LINks potentially could add some real value to that by providing over-arching structure and some input into commissioning but there are all of these other mechanisms too and we need to be encouraging providers and using methods like the Healthcare Commission standards and their inspection process to ensure that people are being able to demonstrate that they are fully engaging their local public and their patients.[119]

Duplicating existing research

139. The NHS Alliance and NHS Confederation warned that LINks should not waste time collecting data since a great deal of it on a wide range of issues was already available:

Dr Fisher: I agree that the data on which recommendations from local people are made should be as robust as possible. There are lots of different ways of getting that information; there is a huge amount of national and international data on things that patients would like in general; the Picker Institute delivers a lot of information about that, for instance. There are lots of surveys that have been done in similar populations to the ones in one's own PCT. So there is quite a lot of robust general information on which you can base decisions.[120]

Chairman: You did say that you should have the data and the data is available, but the real question is do they, in practice and in your experience, have the data as opposed to it being available and they should have it?

Dr Fisher: Yes, it is available. A good PPI forum or a PPI part of the PCT should be able to get that within 15 minutes. It is not difficult to get it. The King's Fund will provide it; lots of places will provide the data. Again, even if you provide it you could provide a very efficient set of information to the PCT.[121]

Professor Coulter was of the same opinion:

I do not think they should collect it [data on public opinion]. I think it would be a terrible waste of time to have them collecting it because it already exists. For example, in this country, which is unique in the world, we have a national patients' survey programme. Every single NHS organisation has to survey their patients on an annual basis. There is quite a bit of public money spent on that programme and it is terribly badly used. … Since those surveys get quite a good response rate, including from the groups who, as I say, would not dream of coming to a committee, from people in disadvantaged groups, people from minority ethnic groups and so on, they are all represented in these surveys, there is a lot of meat there that can be used to ensure that the LINks have access to a much wider view than they are ever going to be able to be in touch with face-to-face.[122]

Work the NHS should do itself

140. We have also heard that in cases where detailed data was not available, LINks were not the right organisation to collect it; responsibility should lie with the NHS. The two representatives from the NHS Confederation made this argument:

I think there are some issues about the rigour you need to do the sorts of studies, such as the quite impressive sounding one we heard described, which are methodologically demanding as well as having some quite significant resource implications but, if these are important questions that either providers or commissioners should be asking, then it might well be that if there is an issue about, for example, waiting times in a genitor-urinary medicine clinic and the need to go and find user opinion, a commissioner or provider that was presented with some early signs that there was an issue would be well advised to go out and research that properly themselves, maybe through helping the patient's forum or the PPI machinery to do that.[123]

We need to be clear who is responsible for what. To expect PPI forums or LINks to do everything that your question suggested I think is a little unrealistic. To expect a PCT and commissioning services, as Nigel says, to undertake effective review of data and get hold of information having been alerted to a problem by a PPI forum or a LINks is entirely reasonable. … You want the patient/clinician relationship to be absolutely based on anecdote; you want big commissioning decisions to be influenced by the stories you hear and then followed through with a slightly more robust objective assessment. We are in danger of doing what we said earlier and seeing PPI is one thing when it is many things.[124]

141. The Committee also heard concerns from Professor Coulter that LINks might not be best placed to research the views of "hard to reach groups":

LINks are supposed to have a broader focus but they are going to have very tiny resources, they are going to have very little in the way of support as I see it, and these issues are so much more important. It is going to be incumbent on the statutory organisations to make sure that they go and, for example, consult the people who are seldom heard, the people who have multiple needs that span health and social care. Hopefully LINks will be in there too but I really do not think LINks are going to be the answer to all of this.[125]

142. In contrast to this we heard from Mrs Beesley, a former member of a PPIf:

I think the best thing that our forum has done was our GP survey. That was the most wonderful experience, meeting the public. We did 687 individual questionnaires and we evaluated 1,477 comments.[126]

Mr Silverman a member of Southwark Patients Forum for Primary Care expressed a similar opinion:

the issue that arose was that there was a cultural and religious need amongst some communities to be able to choose a woman doctor, and when we made some inquiries we found this was not just a religious and cultural issue …Now, we are looking at the right of women to choose the gender for access. For example, what practices have women doctors? Are those women doctors of equal seniority to the male doctors if you choose a woman doctor? …There is no pathway through patient choice that gets you along to a woman doctor, so we are trying to find funding—and this is very important—to do some research on woman's attitudes into the gender of the health professional they need… we will make it happen until we get something we can take to the PCT and it should be an influence on commissioning.[127]

143. Clearly PPIfs are currently doing work that is far more detailed than some witnesses consider necessary. The question arises as to whether the role of LINks should be to identify issues and press for action or undertake detailed research. Dr Fisher of the NHS Alliance stressed the importance of the former:

But I would like to make a point about practice-based commissioning in that you might be able to provide to the practice-based commissioning group but at this point there is no onus on them necessarily to have to do anything about it. The data is important, but however good the data is there is still another question about whether people respond and whether they are in any sense accountable.[128]

144. It seems unlikely that the Southwark PCT is unaware that there is a need for patients to be able to choose the gender of their doctor. If the role of LINks was to raise the issue rather than to substantiate it, their workload would be reduced and they would have more time to hold the NHS to account.

Local variation

145. As LINks are to have a wide remit, and will have to choose which areas to focus on, some witnesses expressed concern that there would be wide variations between LINks. Some were concerned that this would be both unfair and that it would make it hard for the public to know what LINks were for. Sharon Grant of CPPIH told us:

One of the drivers behind the move to the system we have now was the need for some kind of uniformity, for there to be a recognised entity at every local level in which patients and the public could have a say on health and social care. We now seem to be moving away from that, which is worrying, and it seems to be the objective that we do not have consistency, that we let a thousand flowers bloom.[129]

On the other hand, other witnesses saw this state of affairs as a natural outcome of local decision making, rather than a weakness.[130]

Confusion

146. The Committee also heard that the radical changes to the system of PPI, and lack of clarity about what was expected, would create difficulties for volunteers and for the Hosts. Ms Robinson of United Bristol Hospitals Trust Forum told us:

any new organisation is going to start again from scratch and is wasting so much experience and so much good practice that I cannot see that there is going to be a smooth transition, and I think it is very hard on the forum support organisations who have been doing a good job within, as you say, terrible financial constraints.[131]

She continued:

It really is very difficult for anyone to see, if it is going to involve thousands of people, how it is going to be organised. It will put a greater burden on the support organisation than there is at the moment. The wider you go I think the more disseminated, dissipated, the whole effort is going to be and there is not going to be the room for the close focus that is the only thing that produces results.[132]

These concerns were echoed by Sharon Grant:

You will have to have 150 simultaneous commissioning processes, tendering processes going on at the same time in order to make sure that every LINk is supported, and if it is anything like our set-up period, it will take some time for the host to learn what their function is, and it will take time for them to undertake the necessary community development work to grow LINks as an organisation and to decide how in that particular area, going back to Dr Taylor's point, it is going to be structured and governed, et cetera. There will be all these processes going on separately at a local level without any overall co-ordination guidance or advice.[133]

Barrie Taylor of Westminster Council OSC told us:

It will come back to variability again. Let us assume that local authorities have some grasp of knowing what it is they are going to expect from the LINk host. Competition will then exist between agencies as to what they will propose for that…. There are no set standards …and then local authorities will have a complete morass of proposals, some of which may look good but there will be no basic standards set for them; they will be interpreting for themselves how that operates.[134]

147. This confusion could have an effect on volunteers. As David Stout stated.

I think there is a risk of that. What I would be looking for in order for this to work effectively is, as far as one can, to minimise that risk by welcoming existing forum members into the new structures and (which I think is happening) having a proper debate about how the new structures will be set up rather than rushing straight into it. I grant you there is a bit of a conflict there. The longer you take over setting the new structures up the more uncertainty you create and potentially the more people walk away, so I think we have to have a balance there.[135]

148. On our trip to Medway we heard that some of those involved in the 'early adopter' project thought that the lack of a clear purpose or governance structure was causing problems for the project site. The desire not to impose any structure on people appeared to be making the start-up process very slow, although we were told that the project had only been running since the start of the calendar year. With no information on how a LINk will make decisions, or who could make them, it was proving hard to make progress in relation to the LINk. We are not convinced that those taking part in this early stage of the project seemed clear about either what they were supposed to achieve or how they were to achieve it.

149. The result may be an absence of PPI at a crucial time for the NHS, as Sharon Grant of CPPIH told us

We would be in favour of development rather than scrap, have two years further gestation to grow capacity, and then start again. The point is that that two years is going to be a critical two years in the context of system reform, particularly in the context of commissioning, which it is said that LINks are going to be focusing on. By the time LINks get to be functioning, one is concerned that a huge number of huge commissioning decisions will have been made and contracts will be let which are for five or 10 years and from which the public has been by and large excluded.[136]

150. There are serious concerns about both of the models for LINks. It is feared that under the 'PPIf Plus' model, the existing weaknesses of PPIfs would remain. We found some of the arguments for the 'network' model vague and woolly. This model would lack the means to hold the NHS to account, might duplicate existing networks and tend to give greater weight to existing pressure groups rather than those who are not organised such as healthy working people.

151. The Department's present view of LINks may produce not the best of both models but the worst. There are so many things LINks could do. There is a danger that LINks will attempt to take on far too much and undertake work which is best done by others. We are concerned that LINks will duplicate the work of foundation trust Boards of Governors if they focus on service delivery. There is a great deal of high quality information relating to the health service and public attitudes to it. There is a risk that LINks will waste time duplicating this research. There is also a risk that LINks will spend time and money undertaking detailed research that should be the responsibility of the NHS and social care commissioners.

152. The lack of clarity about LINks role and structure is likely to create confusion and inactivity. This may mean that LINks will have difficulty deciding what they are going to do and how to do it and as a result lose the interest of volunteers. This would be particularly unfortunate at a time when significant change is occurring in the NHS and social care services.

How to make LINks effective

153. As we saw in Chapter 2 there are good reasons for separate PPI structures such as LINks to supplement the work of OSCs, PALs, ICAS, foundation trusts and the Healthcare Commission. In the previous section we looked at the different possible models for LINks and the potential problems they may face. Here we consider what must be done if they are to be effective and what issues need to be resolved, including:

• Clarity about what LINks should do;
• Membership;
• Marketing and communication;
• Training;
• Hosts;
• Accountability;
• A national body;
• A period of stability.

First, however, it is important to establish what resources are available to LINks. Only then will it be possible to determine what LINks should do.

RESOURCES

The cost of LINks

154. As we have seen, many witnesses stressed that, despite their small scale and small membership, PPIfs were under-resourced. Mr Silverman of Southwark Patients Forum for Primary Care told us:

We have a job to do but there have never been the financial resources to allow it to be done and that has an impact on recruitment because you need to go out and make people aware that you exist, understand what you do, and that leads to a healthy recruitment. Without those kinds of financial resources and without the support, which there has never been, those things have faltered.[137]

He continued:

Our allowance in time [support provided by FSO staff] is roughly about 12 hours a week, and if you want to be a proactive forum engaged on a lot of fronts, as we are rapidly beginning to be, then it can be overwhelming. There just is not enough support resource to do the job properly.[138]

155. If LINks are to be a network along the lines the Department has proposed they are likely to cost considerably more than PPIfs. Secretarial and administrative support will be required as well as facilitators, i.e. people with expert people skills and a knowledge of the NHS who can bring people together and help them reach agreement. As Frances Hasler of CSCI told us:

The facilitation that is needed, and whether it is training I do not know, is helping to map people through what can be changed and how it can be changed.[139]

156. If, as the Government hopes, a much larger number of volunteers take part there will be a significant increase in costs to cover, for example, more volunteers' expenses, more administrative support, more publications. Money will also be needed to hire large venues for people to meet, as well as employing staff to keep in touch with all those involved in the LINks. In addition, the Department is proposing that LINks provide training and mentoring to some of the voluntary organisations which would also be expensive.[140]

157. Whatever form a LINk takes, it could have nearly 200 NHS organisations in its area. Keeping in touch with all these organisations, let alone contributing feedback to them will be a massive undertaking.

158. We were also told that LINks would need assistance both to enable them to make use of the huge amount of research data which is available. Dr Fisher told us:

There are data crunchers that should be available to LINks or PPI forums… the local authority should be providing statistical support and so on, so there are people around to do it.[141]

159. CPPIH agreed that LINks would be expensive:

if you are serious about involving people, it costs money, and if we really mean what we say about the importance of patient and public involvement in our National Health Service and our social care services and if it is as important as everything else, we have to resource it, particularly if you are using volunteers. They expect to have their expenses paid, they expect to be trained and they expect to have administrative support for all that they are doing. It cannot be done on the cheap.[142]

The Department's position

160. The Minister told us that the abolition of CPPIH would see £9 million redirected to the front line and this would result in one third more money for LINks than PPIfs received directly:

We know at the moment that for example something like £16.5 million goes out to forum support organisations to assist with servicing their patient forums. On top of that there is about £9 million that currently we spend on the Commission on CPPIH. What we want to do is put that money out there at the front-line so that it is going direct through the local authorities to the LINks themselves. That will increase the amount of money which is spent on servicing the LINks themselves.[143]

She repeated the £9m figure several times during the evidence session.[144]

161. In contrast, CPPIH calculated that the actual saving would be "approximately £1.5 million" since a number of CPPIH functions, such as contracting with, and the performance management of, FSOs (which will be replaced by Hosts), running websites, training volunteers, and undertaking criminal records checks of those who wished to use the 'right of entry', would still have to take place.[145] If LINks choose (as seems likely) to set up a national body the saving would be even less.

162. Harry Cayton seemed to agree that the functions would have to be performed and paid for:

of course everything the Commission does is to support forums. What we are saying is that the majority of the money should be able to get into the front-line rather than supporting big infrastructure.[146]

Presumably, he meant that Local Authorities, Hosts and LINks could do the job more cost-effectively than CPPIH.

163. In addition, the Minister told us there would be "economies of scale" since there would be fewer Hosts than FSOs:

I think where it will be an improvement is because there will be fewer contracts… Rather than each little patient forum just having a little bit of money, you will have one LINk with considerably more money[147]

She added:

Also, as I have said, the number of patient forums themselves goes down from 398 into the LINks of which there will be 150, so a lot of the duplication actually ceases and can be put, as I have said, more into servicing people on the front-line.[148]

164. Others claimed that the opposite would be the case. Many FSOs support several (often 10 or 15) PPIfs, thus creating considerable economies of scale. There are likely to be more Hosts than FSOs: since each Local Authority will contract separately for a Host, there may well be a different Host for each LINk.

165. The Department argued that PPI did not have to be expensive; Harry Cayton pointed out that it would cost him nothing to walk to Trafalgar Square to speak to the homeless.[149] The Minister told us:

We have got a meeting tomorrow in Durham where 120 people are coming along to discuss how they want to get involved in patient and public involvement. We know there are voluntary organisations out there it all our constituencies, whether it is Rethink, the Alzheimer's Society or Age Concern, all of which would be interested in contributing to the process. That does not have to be enormously expensive.[150]

However, CPPIH told us that support to enable three deaf people to attend a meeting cost £1,200.[151] Other witnesses provided examples of expensive projects. For instance, finding out the views of black and minority ethnic residents in Westminster cost £10,000,[152] CSCI is spending £64,000 gathering the views of 10 care leavers.[153]

166. Nevertheless, the Department is certain that LINKs will have enough money. Harry Cayton told us:

It is always possible to add up all the things that you might possibly want to do and come out with a headline figure. That is what people do when they are applying for grants. What any decent organisation does is look at the money it has got available and does the best that it can with those funds. I believe that the kind of sums we are talking about are adequate. I would not say they are riches beyond the dreams of avarice but they are adequate for a good organisation to run a decent service.[154]

However, subsequently he seemed to slightly modify his view:

and I am sure that as time goes on we will look at the product that comes out of LINks and think about whether the resources are indeed the resources that they need.[155]

CCIPH, on the other hand, costed the proposed LINks at £64 million, or more than double the current budget of £28 million.[156] In view of this, the organisation fears that LINks "are being set up to fail".[157]

167. Given the concern about costs it is surprising that the 'early adopter' projects do not have a set budget to discover what can be achieved with the money (see Chapter 4).

168. The Minister told us that the abolition of CPPIH would result in one third more money for 'front line' spending by LINks. However, we note that much of the money will be used to replace functions currently carried out on behalf of forums by CPPIH. She also argued that there would be significant economies of scale under the new LINks arrangements, but we are not convinced this is so.

169. PPIfs believe that there is not enough money to support them as their members think is necessary. LINks are being asked to carry out significantly more work. It is a matter of serious concern that the Department has not taken the budget LINks will have into account when deciding their remit and function. The Department will need to ensure that LINks' remit takes account of the available funding. Otherwise there is a risk, as CPPIH fears, that LINks are "being set up to fail because of the level of resources".

WHAT LOCAL INVOLVEMENT NETWORKS SHOULD DO

170. Some witnesses were reluctant to specify what LINks should do.[158] This is not surprising since LINks are to be 'bottom up' organisations which are not controlled from the centre. As we have seen, some witnesses do not believe LINks should have an 'output'; rather, the LINk would be consulted; any output would come from the NHS or other body making use of the LINk.

171. However, other witnesses thought that there should be an output and LINks should know what they were expected to do. Mr Stout of the NHS Confederation told us:

Clearly some of the devil is in the detail and the specification for what LINks has to do is pretty critical…I do not think that specification should be saying how to do it, but what should be clear to the local authority commissioning the Host organisation is what it is we are supposed to be commissioning, what is the output we are trying to get out of this, and the more that is defined clearly the more effective LINks are likely to be.[159]

172. Most witnesses agreed that the Government should clarify what LINks were expected to do. Recommendations included ensuring that LINks:

• focus on areas where their work can be of the most use to the NHS and therefore provide the most benefit for patients; and
• make the best use of their members' time and a limited budget: this would mean that they should:

avoid duplication with the work of other bodies (particularly foundation trust Boards of Governors); and

ensure that research was undertaken by groups with the right skills.

The Department's view

The most useful work: commissioning

173. The Department stressed that it did not want to prescribe what LINks should do, but thought that commissioning should be their priority. In its written evidence the Department explained why:

PCTs and other commissioners are the power base of the new NHS, with 80% of budgets being devolved to them. In the future there will be an increasing mix of providers, meaning that the old system of user involvement, that was focussed around individual NHS institutions is no longer appropriate.[160]

174. Many witnesses supported this proposal. Elizabeth Manero of HealthLink thought this could be popular:

We have had people working with carers in dementia saying to us "We do not want relatives to be treated in acute hospitals where the nurses do not know anything about dementia and think people with dementia are just stupid." That is a very important quality standard which should be put into commissioning.[161]

175. However, other witnesses stressed that overseeing commissioning was not very attractive to volunteers. In Medway we heard how the local PCT forum tried to recruit members but nearly all of them preferred to join the Acute Trust's forum and oversee service delivery. We heard similar accounts from other witnesses:

In our experience patients and their carers describe that they are keen to be involved at a local level where they can seen the benefits and changes that occur as a result of their actions or feedback.[162]

there is no doubt volunteers find it far easier for very obvious reasons to focus on service provision because you can see what is going on. You can go in, you can monitor. When you are talking about commissioning there are quite difficult concepts to doing that[163]

176. The idea of commissioning being very complex is supported by others. Mike Sobanja of the NHS Alliance told the workforce planning inquiry:

I think it was in 1990 that I was appointed director of commissioning in a health authority. I observed at the time that I did not know what the job was, and I do not know that much better what it is now.[164]

Dr Jonathan Tritter told this inquiry:

…Commissioning decisions made at local level have to take into account national targets, local priorities, existing epidemiological evidence and also different communities of interest. It is the balancing of those different tensions which makes those decisions so difficult. Greater transparency will help to justify and provide an account of how those decisions are reached.[165]

177. When Harry Cayton was asked whether patients would want to get involved in commissioning decisions he replied;

I have attended a lot of patient participation groups in practices and many have a constructive engagement with their GPs. There is bound to be variability when we give local responsibility to people. There will be variability in the commitment, far-sightedness and imagination of GPs and also in the quality of patient participation groups and LINks, but I argue that unless we allow these mechanisms to be created and have incentives of various kinds in the system to achieve good quality we will not develop anything like the kind of dynamic dialogue that we would like to happen. with volunteers one always needs to start from where people are.[166]

178. Dr Mayo told the Committee:

I agree that the issue of commissioning is more obscure to ordinary people and patients and yet it is key to whether services are delivered in responsive ways. One needs to build up the involvement so that one can take people voluntarily into that, but, as with the public at large, when dealing with volunteers one always needs to start from where people are.[167]

179. It would be possible to conclude from those two answers that while it is felt that PPI could add a lot to commissioning not enough thought has gone into how to make it attractive to the public. As Sharon Grant stated:

We are at the very early stages of starting to look at exactly how that can be done. Commissioning is a highly complex process at one level, and we are not here trying to turn patients and the public into experts but we are going to try and find a level at which the public can usefully engage and influence the way in which commissioning is carried out. We have just started to do that.[168]

Making best use of LINks' members' time

180. As we saw earlier, there are strong arguments that LINks should avoid duplicating work which has been done by other organisations or of undertaking tasks which other organisations were better equipped to do, including research, contacting 'hard to reach' groups and the work undertaken by foundation trust Boards of Governors, in particular service delivery. Questioned about this, the Minister again refused to be prescriptive. She told us:

So it is giving the LINks the ability to look from the point of view of the patient as to what happens to them during that journey, going through all the different stages of care, which means that they have got much greater power over that patient journey and what they can look at, but it involves also the social care side. As you know, that is another new power we are giving to LINks, but it is up to the local LINk to decide what it wants to prioritise. We are not saying you have to look at every single thing.[169]

She was also unwilling to prevent or discourage LINks from looking at certain areas to prevent duplication.[170]

181. However, she seemed to think that rather than reaching out to unheard groups themselves, LINks should ensure PCTs were doing so:

If a LINk was working well I hope it would have service users and people who are members of, and in touch with, local organisations like Rethink or MIND, and I hope they would become members of the LINk so they would be contributing to the process whereby the LINk says, "That is interesting. You are telling us that you do not feel that the mental healthcare services are reaching out enough at the moment to help people within the community. PCT, what have you got to say about that?" and the PCT has a duty to respond to that and say… "we have invited them [Rethink and MIND] in to discuss why people are facing these problems".[171]

Later she seemed to move away from this slightly:

All in all, it is a kind of general approach. You cannot necessarily pigeonhole things and say, "That is the job of the PCT, that is the job of the LINk". If a LINk is going to be effective it has to be working closely with the PCT. It is an iterative process, if you see what I mean.[172]

182. We asked the Minister whether LINks should collect information themselves or seek to make use of existing information. She replied:

Probably a mixture. My feeling is that we do have quite massive amounts of information collected but whether we use it as effectively as we ought to is rather different.[173]

But she continued

I would not like to say to LINks "you can only use this information", because they might say, "Yes, but we would like to go and have our own views, thank you very much."[174]

183. The Minister agreed that the lack of prescription would inevitably mean that different LINks would do different types of work:

We do want them to produce an annual report as to what they have done and we do want to say, "These are your new powers which we believe are much extended," but we do not believe that within that it is necessary for them in every different part of the country to do exactly the same thing.[175]

184. We welcome the Department's decision not to prescribe in detail how LINks should operate but a clear direction is required in relation to what LINks should do. This the Department has failed to give. LINks will have limited resources and will have to prioritise. Clarity about what LINks should be doing will reduce confusion, allow LINks to produce useful work faster and make it easier for Local Authorities and Hosts. The Department must issue guidance to clarify what LINks priorities should be. In its guidance the Department must also make it clear to LINks that they should avoid duplicating the work of other bodies.

185. The Committee supports the Department's aim of increasing patient and public involvement in commissioning decisions. However, if volunteers are given a free choice they are unlikely to make commissioning a priority as they prefer to concentrate on the quality of the services which NHS bodies provide. This would duplicate the work of foundation trust Boards of Governors. If the Department wishes LINks to focus on commissioning it must indicate how it expects this to happen and what steps it proposes to take to make it happen.

186. We recommend that each LINk discuss with its local NHS bodies and social care commissioners its priorities. The Department should issue guidance to clarify what the respective roles of LINks, the NHS and social care commissioners should be. We further recommend that the guidance indicate that LINks should be aware of the cost and difficulties of some of the tasks they might seek to undertake, such as reaching out to 'unheard groups' (eg. healthy working people, non-English speakers, homeless people), undertaking research and compiling scientifically rigorous data. LINks should be encouraged to ask NHS bodies and social care commissioners to carry out such work and to hold them to account for doing it. A large amount of data is already collected on a range of views. The Host should be responsible for making LINks aware of the existence of this data and helping them make use of it.

THE MEMBERSHIP

Optimists and pessimists

187. Witnesses disagreed about whether there was a large number of people and organisations who would be keen to get involved in LINks. One group, which might be termed the optimists, argued that people were potentially keen, but were discouraged by a variety of considerations. Harry Cayton told us:

If being a member of a LINk is a miserable activity—a bit like, I fear, being a member of a forum today when it has been through such a difficult time—why would somebody bother? Any organisation that wants to build its membership needs to provide support, encouragement and love for its members.[176]

Richard Stein of Leigh Day and Co Solicitors agreed:

There are lots of people in the community who will give their time and who have the skills and the expertise to make a valuable contribution. What the NHS needs to learn to do is to make it feel worth their while.[177]

He continued:

It is not that they are not interested but they think to go along to the meetings and the framework and the way it operates is not going to make it worth their while being there because they will not be heard in a significant or appropriate way.[178]

188. On the other hand, another group, the pessimists, believe that PPI work is by its nature boring and that very few people would want to do it. Professor Coulter told the Committee:

we have heard a lot, and it is an important issue, about the extent to which people do or do not want to get involved in hospital friends or in sitting on LINks or PPI forums or whatever. That is a real problem because it is only a tiny proportion of the population that does want that[179]

She added

It is the people who have the time. Other people with more problems in their lives just do not have time to sit on committees or to do some research into what patients think about their practices or whatever.[180]

189. The BMA's evidence suggested that it not be easy to find suitable people to play an active role in LINks:

There are few people who have the capacity to really engage, and to find ways of engaging others. Capacity is about having time, self-confidence, access to technology, the ability to spend hours reading lengthy and often turgid official documents, political skills, committee experience and the availability to attend meetings during working hours as well as outside them.[181]

190. The pessimists pointed out that hopes that voluntary organisations will make a major contribution to LINks may be disappointed. According to the West Sussex PPIf Chairs:

the CHCs were established to include direct membership of voluntary organisations and in West Sussex at least, had difficulty in recruiting people with sufficient time and interest. Our PPI Forums have endeavoured to gain support and input from voluntary organisations, but generally unsuccessfully. Voluntary organisations and their active members are concerned with their 'cause'. Trusts do consult and include them in specific subjects but there is no evidence to suggest that their members feel isolated from the NHS or would wish to broaden their contribution to it.[182]

In Medway we were only able to meet a representative from one voluntary organisation as members of the other three organisations we had hoped to meet were unable to attend.

191. Many people are very concerned about hospital closures and will campaign against them. The optimists thought this showed the potential for a wider involvement in patient and public involvement; the pessimists did not.

Keeping the volunteers

192. A few witnesses were concerned about some of the members of PPIfs. Richard Stein told us:

unfortunately my experience, which is again usually when these things do not work very well, is that there is a handful of busybodies, to be rather blunt, who have their own obsessions that are not necessarily the ones that most people care about and who, understandably, are the kind of people who, when you have to have meetings with them, are not really helping at all. In that situation, it is a spiral of decline. They will end up being there, but they will not have anything to say, so you will not involve them.[183]

193. Mary Adams argued for a rapid turnover of members:

It is just this idea of keeping freshness… I am just thinking of the people that might come forward and what they are like…I think in that way, if you limit it to three years, you will always have a kind of freshness so that people do not become institutionalised and become the kind of usual suspects that always are there contributing. It is a way of limiting that from happening.

Mr Amess: So you want to get shot of them if they become absolute bores and a bit of a nuisance? It is probably not a bad idea!

Ms Adams: If they become too professionalised, if they stop being as lay in their perspective as they might be.[184]

194. Others, however, were far more worried about losing volunteers. David Wood from the charity Attend told us that overall numbers of volunteers are falling.[185] This will become more acute as more hospital trusts achieve foundation status and the new bodies try to encourage individuals to join their Boards of Governors. As Nigel Edwards told us:

I just see a real hazard here, first of all, of cannibalising a relatively small number of people. We already have a bit of an issue in some areas where, if you have a mental health trust and an acute trust, there are a limited number of people you want to get involved in this way, and that we have cannibalised people's willingness between different and overlapping (and often maybe unhelpfully overlapping) bodies.[186]

195. There are such a small number of people prepared to take part it is important they are looked after, both to prevent them leaving and to enable them to make the most of their time.

196. We hope that the Department is correct and that LINks will successfully attract many new members. However, we are concerned that while there may be large numbers of people who will become involved in some campaigns related to the health service, such as hospital closures, few are prepared to make a major commitment to patient and public involvement. Many of these people are members of PPIfs. The Department should take steps to ensure that in this period of uncertainty they do not cease to be involved in patient and public involvement.

RIGHT OF ENTRY

197. Many witnesses argued that LINks should have a right of entry. Elizabeth Manero told us:

I see the visiting rights not as inspection but as the furtherance of a dialogue and relationship between the community and the Health Service… if you are going to exclude forums or LINks from actually going into NHS premises, you are saying that the views of the population on the Health Service are not relevant if they are using the Health Service at the time.[187]

Mrs Robinson from United Bristol Hospitals PPIf said that:

one of the things that forums can do is support hospital staff when they visit. It is not just a question of patients. Often staff take us on one side and say: "We have been pressing and pressing for this, we would really appreciate it if you could put a good word in", and we do find sometimes that tips the balance.[188]

She continued:

I think this has already been said but we do not want any dilution of our statutory rights. They are the basic minimum with which we can function. We must be able to go into premises and see what is going on. Whether you call it inspections or visiting or whatever, we have to be able to go and talk to people.[189]

198. The Department's draft document provided more details about LINks' right of entry. LINks will not be able to visit:

until they have written to the relevant regulator, indicating their intention to visit a facility, and received a reply—this is to ensure that there is coordination of activity at a local level; it may be that the regulator already plans a visit in which case it will have the ability to request that the LINk holds off, or just as possible joins in with its review.

199. LINks will be allowed to visit not only places providing NHS care, but also some social care providers, including communal areas of nursing homes, respite care, and day centres, However they will not be able to visit the homes and hostels of those with disability, mental health problems and learning disabilities, or any institutions providing social care for children.

200. CPPIH was unhappy with the draft document, particularly as it applied to the NHS:

In effect the proposals make a mockery of the visiting rights of the new LINks. It appears that before any visit can take place, they will have to write to, and obtain a reply from, the regulator, i.e. the Healthcare Commission! This gives the lie to any notion that LINks will be able to be free and independent in the way that they work, and other proposals will severely curtail the locations which they will be permitted to enter and observe services in delivery.[190]

CPPIH went on to claim that:

This would have the effect of preventing LINks carrying out informal visits and unannounced formal visits, because of the requirement to give written notice of a visit. It also enables the regulator to place barriers in the way of LINks making use of any right to visit premises, creating unnecessary bureaucracy and potentially preventing the LINK from following up concerns raised with them by service users or concerns raised in the media in a timely manner.[191]

201. Rights of entry to social care premises are more complex than to NHS care. Frances Hasler from CSCI was concerned that:

Social care takes place in people's homes, either in a residential care home or in their own private homes, which is very different from the vast majority of healthcare that people have been talking about today which takes place in public spaces, so one of our concerns was the absolute control of this ought to rest with the people whose homes are being talked about. . …. In the proposals that we had seen it was not very clear how this would look and feel different from inspection from the provider viewpoint, or indeed sometimes from the viewpoint of people who live in care homes. One of the things we know from talking to people is that they can quite often feel they are the ones who are being examined when someone goes in. Although that is not the intention of inspection it can often feel that way.[192]

However, she did not think LINks should be banned from visiting social care premises:

Dr Taylor: I think you said it might be possible for residents to invite LINks in?

Ms Hasler: I would like to hope it would be. Again, in open institutions, and many, many care homes are very open to the local community and very vibrant, and sometimes you go to some care homes and no-one is at home because they are all out doing things in their local community, in those sorts of places there are already good links. I would hope people who live in care homes would sometimes want to influence the commissioners of services through the LINk and that is one way they can do it.[193]

CPPIH agreed, informing us:

Clearly the LINk should not be able to enter the home within a care facility of a service user without his or her permission, but it should be the service user who is able to refuse entry not the provider or owner of the facility. There may be cases where service users wish the LINK to visit.[194]

202. It is vital that LINks have the same right of entry to places where NHS care is carried out as PPIfs have at present. There must be no diminution of the powers of PPIfs. LINks should not have to write to the regulator and wait for a reply. Ideally, LINks should have the same rights in relation to social care premises with due regard for the needs and wishes of the residents.

MARKETING AND COMMUNICATION

203. PPIfs have suffered from a low profile. Optimists took the view that with better marketing and communications LINks could have a much higher profile and attract many more members. Money spent on advertising could be well-spent, as PPIf members told us:

We have a job to do but there have never been the financial resources to allow it to be done and that has an impact on recruitment because you need to go out and make people aware that you exist, understand what you do, and that leads to a healthy recruitment.[195]

When you ask your support organisation: "Can we advertise to try to get it in the paper?", it is always "There is not enough money", so apart from knocking on doors I really do not know the answer. I would like to see more put into recruitment.[196]

Nobody knows what forums are and if they do not [know] what forums are after three years how are they going to know what LINks are when they are first set up?[197]

204. It was claimed that advertising in the press would also attract new people who had not previously been engaged in PPI. In addition, a higher public profile would give LINks' reports more clout with the NHS and make it easier to get media coverage, which PPIfs struggle to achieve at the moment.[198] NICE's experience demonstrates the effectiveness of advertising:

NICE's national advertisement for its Citizens Council asked whether people wanted to improve the NHS. NICE received initially 35,000 expressions of interest which to me is absolutely stunning. Four thousand people followed it through by filling out application forms and so on.[199]

205. On the other hand, if the pessimists are right, and few people want to be involved in PPI work, advertising might not attract many new people and might be money poorly spent.

206. The Minister told us that prospective Hosts could include advertising when putting forwards proposals to Local Authorities but:

It will vary from area to area as to how people feel they want to use a budget in terms of advertising for people to join.[200]

If the early adopter projects do not involve Hosts, it is unclear whether the projects will examine the effectiveness of advertising.

207. Some thought that LINks would be able to generate publicity by a better communications strategy, encouraging local press coverage, but others were sceptical, arguing that the local press was not interested in stories about PPI. Penny Robinson told us that the local press tend to only take notice of bad news stories:

A forum doing a little bit of good work is not news in the same way as a postponed operation or some kind of hospital scandal is.[201]

208. LINks must have a higher profile with the public than PPIfs. Advertising might be one way to achieve this; on the other hand, advertising could be a waste of LINks' limited budgets. We recommend that the National Centre for Involvement should prepare best practice guidance on advertising and publicity which LINks could request if they thought it helpful.

TRAINING

209. PPIf members told us that they needed training on a wide range of issues. One submission from PPIfs operating in Bath and North East Somerset, Bristol, Gloucestershire, North Somerset, South Gloucestershire, Swindon and Wiltshire suggested training should be provided on

• 'what is a LINk';
• Statutory duties and rights;
• How to conduct and behave in a meeting objectively;
• How to communicate with the public;
• Calling on experts;
• Health and social care education;
• Time management;
• Leadership training;
• Job description for volunteers and training on this;
• Understanding NHS structures;
• Training for specialised areas e.g. visiting; PR; checking trust literature etc; public meetings eg. use of microphones.[202]

Other submissions argued that there should be training on legal issues, auditing accounts, and training on specific parts of the NHS.

210. We received evidence that some training should be provided centrally, both to ensure its quality and to allow volunteers to gain a nationally recognised certificate. We were told that obtaining such a qualification would be attractive for volunteers and could encourage employers to allow employees to take time off work for LINk activities.[203]

211. On the one hand, the Minister told us that LINks would have to be realistic about how much training they could do:

It will be for individual LINks to decide how much training is necessary….if people are on a board then it may be that there are particular bits of training that are necessary. I think we have to be realistic. I do not envisage a problem. For example a LINk might say to the local Age Concern or Alzheimer's Society, "Why don't you as an organisation join our LINk so that all your volunteers and all your interested people become part of that?" The idea that you would then train every one of those people would be, first of all, unrealistic and, secondly, probably unnecessary.[204]

On the other hand, the Department proposed that :

some groups are particularly disadvantaged or vulnerable to breaches of their human rights. LINks should have a role in providing capacity building support to those people who are not accustomed to having their views heard or indeed conveying their views, through training or mentoring.[205]

This seems to imply that a LINk would be expected to provide training for voluntary organisations rather than for just a few members of the LINk, as the Minister suggested. The Department also stated that anyone who exercised the right of entry would need to be trained.

212. We agree with the Minister that if LINks have a large membership, not all members can be trained. However, it will be crucial that at least a core of people in each LINk is trained to ensure they have the skills to carry out their task. The provision of training centrally with an appropriate qualification for those who completed the course could be attractive to volunteers.

HOSTS

213. We heard a range of concerns about conflicts of interest which might arise if social care providers can act as Hosts as the Government proposes. For example:

• The Local Authority might punish or reward the Host when awarding a social care contract;
• The Local Authority might not take LINks' recommendations seriously if there were clear financial benefit to the Host;
• The Host might seek to encourage the LINk to refrain from criticising the Local Authority, or indeed its own service provision;
• Local people, volunteers, and the NHS might lose faith in the LINk or Host.

214. Mr Silverman told us:

I am a trustee of a local charity and 80% of our funding comes from public sector commissioning. Quite frankly, as a member of a LINks, if I was involved I would be extremely hesitant about challenging the commissioners, and I think there is going to be some real conflict of interest in a situation with local charities. …I promise you, if you are sitting on a LINks, you are not going to be upsetting your commissioner.[206]

The Minister attempted to reassure us:

I would want to be very clear that there should not be that kind of conflict of interest. If somebody was a direct service provider, the LINk is likely to be investigating the services and I think we do need to be absolutely clear in the way that the contracts would be let to make sure that any worries about conflicts of interest were dealt with. I would want that to be part of the discussions that we are having with local authorities as to how they would manage that situation.[207]

215. We asked her how the conflicts of interest should be dealt with. She told us that Hosts would be accountable to LINks for their behaviour which should ensure that Hosts acted properly. Other witnesses suggested a number of other measures to deal with the potential conflicts of interests. A register of interests would improve transparency, but would be unlikely to allay concerns.

216. We are concerned about social care providers acting as Hosts. It will be difficult for contracts with Hosts to be drawn up to avoid conflicts of interest. We were not satisfied with the Minister's response to our questions on this issue. Unless the Department can provide a satisfactory way to avoid actual and perceived conflicts of interest, social care providers should not act as Hosts.

ACCOUNTABILITY

217. Meredith Vivian explained the accountability arrangements relating to LINks:

The local authority will contract with the Host. The specification that the Department of Health is now establishing will set out what the Host needs to do. The Host will be accountable to the local authority for the money it has spent and will need to show how it is meeting the contract. There is, however, dual accountability for the host. The Host is also the support provided to the LINk, so it is the LINk which says how much money should be spent on certain activities, decides priorities of activity and what reports need to be sent to the PCT or the local authority. The power base is the LINk but it is the Host which must say how it is meeting the contract specification. The LINk is certainly independent of the local authority; it does not have to do what the local authority tells it.[208]

The Bill states that the local authority must require the Host to ensure that the LINk compiles an annual report and sends it to the Secretary of State. However in draft guidance for Hosts the Department has indicated that neither Hosts nor local authorities are to have any control over LINks:

The LINk will operate independently of the local authority, within its own governance structure and decision making processes.

A regular performance review meeting will be organised by the local authority to ensure the host is performing and as a result meeting the LINk's need and ensuring its success locally. It is essential that the LINk inputs into the local authority's performance management of the host.

LINk governance arrangements are a matter for the LINk membership and do not come under the control of either host or local authority.

It will be for the LINk to decide what work it does, when and how and how to spend its funds. The purpose of a host organisation is to enable, support and guide the LINk in their activities.

The document also stressed that LINk decisions should not be taken by a small group:

The governance structure should always seek to involve and communicate with the wider LINk membership in all its activities. It should not itself act as a consultative body or speak on behalf of the LINk without its involvement and consent. The governance structure will carry out its function with the support of the Host.

218. However, there seems to be no mechanism to ensure that LINks do what they are supposed to do or that they act appropriately. It is not difficult to envisage a situation arising in which a LINk failed to agree an annual report. The Secretary of State would presumably take this up with the Local Authority, which would take it up with the Host. But the LINk is not accountable to the Host.

As with any organisation there is potential for it [a LINK] not to carry out its functions properly. At present there appears to be no robust mechanism for performance management or for managing a situation in which a LINk has become dysfunctional other than to enforce the contract with the Host organisation.[209]

219. The draft document also says:

LINks should develop a strategic focus, looking at for example, service commissioning.[210]

As we have seen LINks are unlikely to choose to do this. It is hard to see how a Host could be required to ensure that this took place when they are to have no control over the governance or work programme of the LINk.

220. Witnesses welcomed the fact that Local Authorities and Hosts will not control LINks. However we are concerned that the lines of accountability are confused. Were a LINk to be dysfunctional, the Host would be powerless to change it, and the Local Authority would only be able to hold the Host to account. The Department needs to clarify how LINks, as well as Hosts, are to be held to account.

A NATIONAL BODY

221. The Bill abolishes CPPIH and the Department does not plan to replace it. The Department's written evidence states:

Whilst LINks are independent and will have the power to develop their own priorities and agendas, they will need to develop relationships with a number of stakeholders to fulfil their statutory role effectively. In certain circumstances LINks may want to work in partnership to scrutinise services across local authority boundaries. LINks may also wish to work together in regional groups, or even nationally to share experience and findings. We believe there is nothing to prevent LINks establishing a national body to share and co-ordinate their work if they so wish.[211]

222. With the notable exception of UNISON,[212] as we have seen, witnesses had little positive to say about CPPIH. However, we received a considerable amount of evidence which argued there needed to be some form of national body for LINks. For example, Elizabeth Manero told us:

We do not have anything at all as a national organisation, which I think is the most extraordinary proposal. It is not a reform if you take something apart and only put something back to replace half of it. I think there is a very significant gap.[213]

223. A number of different functions were proposed for the national body, including:

• To be a conduit for funding (so that it did not go through Local Authorities);
• To oversee LINks and step in if things go wrong;
• To share best practice;
• To provide training; and
• To be a national voice for LINks.

224. Witnesses did not agree which of these functions they wanted a national body to perform. Some wanted a body which undertook similar tasks to CPPIH:

The potential is that you will get a fragmented process in which there will be variable sets of standards and the likelihood is that, should there not be some sort of co-ordination or base the standards sorted out, for membership, the way in which the membership appointments process will operate and how then that member is expected to perform, that is when you are going to start to see a complete fragmentation because individual agencies, individual LINk organisations will take their own direction, which will not help the process of either the public knowing what to expect or to be engaged.[214] [Barrie Taylor]

if you take out an overarching body, you end up with 150 different kinds of training and support, it is not very efficient and neither will you get the learning being shared from one LINk to another on this issue as on so much else, or any national conclusions being drawn about how it is all working. It is all going to be done very much at a local level and it is hard to see how the best is going to come out of it in that very localised context.[215] [Sharon Grant]

225. Most witnesses however wanted a body different from CPPIH:

There should be a national organization to which LINks affiliate, and this needs to be adequately funded. What it does not need to be is a controlling mechanism for the LINks, or—in short—similar to the CPPIH.[216]

A national body is needed to oversee all LINks and share best practice.[217]

There is mechanism for gathering 'collective wisdom' in order to drive changes in national policy…. The point being that opportunities to share local work more widely is very valuable. This is distinct from national 'co-ordination' that would not sit well with the flexibility that is suggested for the way LINks are established and run.[218]

226. Elizabeth Manero of Healthlink was very clear about how a new national body might differ from CPPIH:

The issue about a national voice is actually quite a difficult one, because there are two types of national voice and it is a question of deciding which one you need and how to do it. Do you need a bottom-up national voice? That means that a LINk can be confident that, if they agree with all the other LINks in their region that they want a particular issue taken up on their behalf nationally because they do not feel they can resolve it locally, that would be a bottom-up organisation which is led by its members and accountable to its member LINks, which I think is necessary. The top-down type of national organisation, which is what the Commission is currently, is one which performance-manages the patient forums, deals with their governance, their training, their standards and so on.[219]

227. The Department takes a similar view and stated that LINks would be free to set up their own national body if they so wish. The Department added that the National Centre for Involvement might perform some of the functions of a national body:

Sandra Gidley:…Is there not a role for some sort of overseeing body that can help to monitor and spread best practice as well?

Ms Winterton: That is what we are having.

Sandra Gidley: That will effectively be the structure?

Ms Winterton: As I say, the National Centre for Involvement will be doing exactly what you have described in terms of spreading best practice and being able to give advice to the new LINks organisations about good ways of operating.

Mr Vivian: It has an additional £2 million on top of the existing £28 million, just to say that that resourcing is an additional factor.[220]

The Department later clarified that the £2 million is not money to support LINks; it is the Centre's total annual budget. The Department also told us that the Centre:

…will additionally provide advice and guidance to local involvement networks. It will act as a repository for good practice and make available ideas and approaches for how LINks can go about their work as effectively as possible. I do not think this role could be described as a monitoring role but clearly there will be a degree of evaluation of practice to enable it to determine whether that practice is good or not.[221]

228. There will be a particular problem when the LINks begin. At this stage they will be most in need of guidance and advice, but presumably it will take time before they can establish their own effective national body. At this stage the National Centre for Involvement could have an important role to play, but there is concern that it will not have adequate funds to so.

229. We welcome the Government's decision to allow LINks to set up their own national body. Unfortunately, this means that there will be no national body to support and guide LINks when they are first established. We also welcome the Government's decision as an interim measure to give this role and that of diffusing best practice to the National Centre for Involvement. The National Centre must not direct LINks but supply assistance and advice on request. We recommend that the Centre be provided with additional funds to allow it to undertake this task. We also recommend that a national website be set up to allow LINks to share best practice.

AN END TO UNCERTAINTY

230. There is widespread concern that the frequent changes to the PPI system have had a detrimental effect. Several witnesses stressed that continuity is particularly important for volunteers:

You had members joining these organisations who were not quite clear how they were going to work and then becoming disillusioned and leaving and a constant turnover of membership, which obviously does not lead to very effective development of the sorts of partnerships you are talking about. More latterly, I think the point raised again by our colleagues from the PPI forums earlier about the uncertainty about the future of these organisations for a relatively extended period has not helped any of that.[222]

I think it is about an overall awareness and changing things frequently. In the voluntary sector two or three years is frequent. It takes a while for people to understand the change and for volunteers to contribute. Frequent changes of the nature that we are experiencing actually put people off.[223]

Each time you change, in the volunteer's view, particularly if they are volunteering, there is an evaluation that there is something wrong. It is making a judgment. Although that may not be the judgment, my whole experience of working with volunteers is that they read it as an implied judgment that somehow it is an evaluation that their volunteering is not good.[224]

231. Change is particularly unsettling for voluntary bodies and, for whatever reasons, it is likely to be viewed as criticism of their work. We recommend that LINks be given a sufficient period to establish themselves before any further changes are made.

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89   See Explanatory Notes to the Local Government and Public Involvement in Health Bill [Bill 16 (2006-07)-EN] Back

90   Ev 1 (HC 278-II) Back

91   Department of Health, Local Involvement Network (LINks) Bulletin, Issue 1, March 2007 Back

92   Q 454 Back

93   Qq 455, 456 Back

94   Q 461 Back

95   Q 116 Back

96   Qq 119-121 Back

97   Q 175 Back

98   Q 175 Back

99   Q 183 Back

100   Q 38 [Dr Mayo] Back

101   Q 208 [Dr Day] Back

102   Q 67 Back

103   Q 65 Back

104   Draft document circulated by the Department Back

105   Q 121 Back

106   Q 160 Back

107   Q 116 Back

108   Q 216 Back

109   Q 227 [Ms Robinson] Back

110   Q 236 Back

111   Q 118 Back

112   Written evidence from Albert Chapman (PPI 153) [not printed] Back

113   Ev 199 (HC 278-II) Back

114   Q 225 Back

115   Q 121 Back

116   Draft document circulated by the Department Back

117   Q 164 Back

118   Q 208 Back

119   Q 256 Back

120   Q 251 Back

121   Q 252 Back

122   Q 335 Back

123   Q 253 [Nigel Edwards] Back

124   Q 253 [David Stout] Back

125   Q 325 Back

126   Q 216 Back

127   Q 243 Back

128   Q 252 Back

129   Q 134 Back

130   Q 38 Back

131   Q 224 Back

132   Q 227 Back

133   Q 137 Back

134   Q 137 Back

135   Q 268 Back

136   Q 122 Back

137   Q 216 Back

138   Q 223 Back

139   Q 338 Back

140   Draft document from the Department Back

141   Q 253 Back

142   Q 110 Back

143   Q 411 Back

144   Qq 411, 418, 419 Back

145   Ev 111 (HC 278-III) Back

146   Q 425 Back

147   Q 428 Back

148   Q 419 Back

149   Q 440 Back

150   Q 412 Back

151   Ev 111 (HC 278-III) Back

152   Kensington Chelsea and Westminster BME forum, Minding the gaps, Are BME groups partners or substitutes in health provision, July 2006 Back

153   The children's champions: Youngsters raised in care could soon play a vital role in assessing the local services that have shaped their lives, The Guardian, 28 February 2007 www.guardian.co.uk Back

154   Q 419 Back

155   Q 419 Back

156   Ev 106 (HC 278-III) Back

157   Q 110 Back

158   Q 38 Back

159   Q 25 Back

160   Ev 2 (HC 278-II) Back

161   Q 132 Back

162   Ev 155 (HC 278-II) Back

163   Information from Anatomy of Accountability, Centre for Public Scrutiny Conference, 30 November 2006 Back

164   Health Committee, Fourth Report of Session 2006-7, Workforce Planning, HC 171-II, Q 862 Back

165   Q 5 Back

166   Q 64 Back

167   Q 37 Back

168   Q 133 Back

169   Q 410 Back

170   Q 438 Back

171   Q 439 Back

172   Q 439 Back

173   Q 441 Back

174   Q 441 Back

175   Q 410 Back

176   Q 85 Back

177   Q 385 Back

178   Q 383 Back

179   Q 330 Back

180   Q 334 Back

181   Ev 31 (HC 278-II) Back

182   Ev 276 (HC 278-II) Back

183   Q 385 Back

184   Qq 198-9 Back

185   Q 326 Back

186   Q 275 Back

187   Q 131 Back

188   Q 219 Back

189   Q 240 Back

190   Ev 140 (HC 278-III) Back

191   Ev 140 (HC 278-III) Back

192   Q 346 Back

193   Q 352 Back

194   Ev 141 (HC 278-III) Back

195   Q 216 Back

196   Q 218 Back

197   Q 231 Back

198   Q 232 Back

199   Q 18 [Professor Davies] Back

200   Q 445 Back

201   Q 232 Back

202   Ev 18 (HC 278-II) Back

203   Ref? check Back

204   Q 413 Back

205   Ev 1 (HC 278-II) Back

206   Q 233 Back

207   Q 432 Back

208   Q 93 Back

209   Ev 141 (HC 278-II) Back

210   Draft document circulated by the Department Back

211   Ev 1 (HC 278-II) Back

212   Ev 268 (HC 278-II) Back

213   Q 135 Back

214   Q 135 Back

215   Q 128 Back

216   Ev 328 (HC 278-II) Back

217   Ev 216 (HC 278-II) Back

218   Ev 45 (HC 278-II) Back

219   Q 135 Back

220   Q 430-431 Back

221   Ev 100 (HC 278-III) Back

222   Q 266 Back

223   Q 327 Back

224   Q 328 Back

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Prepared 20 April 2007