Public and Patient Involvement submission to Health Committee January 2007


Response to the Health Committee Enquiry by the Socialist Health Association

The Socialist Health Association was founded in 1930 to campaign for a National Health Service and is affiliated to the Labour Party. We are a membership organisation with members who work in and use the NHS. We include doctors and clinicians, managers, board members and patients. Our interest in public and patient involvement is longstanding. Our members campaigned for democracy in the NHS in the 1930s and 1940s and for the establishment of Community Health Councils in the early 1970s. Many were CHC members and many are now members of patient forums or act as lay members on various bodies including both the GMC and local pharmacy committees. Our members are involved in a wide variety of consultation and involvement processes in health and social care. This submission is made on behalf of the Association.

1. What is the purpose of public and patient involvement?

There are many possible answers to this. And or course there are many sorts of involvement at different levels and for different purposes. We would hope the committee are familiar with Arnstein’s Ladder of Citizen Participation. (Arnstein, Sherry R. “A Ladder of Citizen Participation,” JAIP, Vol. 35, No. 4, July 1969, pp. 216-224.) We would like to see less tokenism and more citizen control, to use Arnstein’s typology.

Firstly there seems to be good evidence that in a more diverse society it has become difficult for healthcare providers to devise services which are appropriate for all sections of the community without explicitly involving them in planning the provision and ensuring that effective mechanisms exist to communicate their concerns and experiences of services. The second answer is that citizens are entitled to have a voice in the expenditure of large sums of public money on their behalf. Existing systems of local democratic accountability are grossly inadequate. PPI might not be so necessary if there was sufficient local democratic accountability. “Our public realm needs structures and strategies that can enthuse and empower every individual and every community to participate.” (Involve). For any organisation providing services to the general public, whether government owned, a voluntary organisation, or a commercial enterprise, it is vital for its success to have its performance constantly reviewed by its users. At a collective level, it is about patients being involved in designing new services and improving current ones. At an individual level, it is about shared decision-making. Because of the difficulty of getting informed responses from many patients (because of their condition) the involvement of a robust, knowledgeable and independent public & patients organisation is a necessity. Furthermore health is not a commodity to be purchased or just a service to be passively enjoyed. People need to be positively and actively involved with their own health and this requires opportunities for both collective and individual involvement. There is widespread evidence that the information component of healthcare in the UK is the part which is least effectively delivered and improving this requires active patient involvement.

2. What form of public and patient involvement is desirable, practical and offers good value for money?

The idea that PPI structures should relate to an area, rather than to specific healthcare institutions seems sound, but there will some operational complications: if the LINK for Cumbria, for example, wanted to investigate services for premature babies then those services are largely provided in Manchester and Newcastle. Some of the PCT areas are now very large and there will be considerable difficulty in organising face to face meetings for people across, for example, the whole of Devon. It will be necessary to facilitate arrangements whereby all the communities which use a particular service can be brought together. The network of LINKs will need to spread out beyond the area of an individual LINK.

PPI structures need to relate especially to disadvantaged sections of the community. They must be given the means to relate to people with sensory or language difficulties, people with dementia and those confined to their home or to an institution. It is particularly important that they can reach those who have more than one disadvantage – elderly Asian ladies for example. This probably means that they will have to work with voluntary organisations who will have the right contacts.

The blocks at the shared -decision making level are partly to do with doctors/clinicians. Clinicians need incentives and training to get better at supporting patients in making more decisions themselves and caring for themselves better. Patients do actually find this quite difficult territory, too. The system does not incentivise people on the ground to make use of PPI. If it was monitored vigorously, if it really involved local people on the ground, if it was structured to make a difference, it would work much better – it could change the face of the NHS. The solution for both doctors and patients is to acknowledge the truth that nobody can look after anybody-else’s health, and, whoever you are, your health is your own responsibility. This is the message in the Expert Patients Programme course. Liam Donaldson, the Chief Medical Officer has rightly called for it to be provided for all the 17 million chronically ill patients in Britain. However, doctors are resisting it as they see it as the end of their ability to dominate their patients. Historically, doctors have had a monopoly on their knowledge of diseases. They have guarded this jealously as their stock in trade which gave them power over their patients. However, with the growth of the internet and complementary and alternative therapy, their monopoly is breaking, and many patients are now more knowledgeable than their doctor on their particular condition. The development of self care requires from clinicians:

  • to trust the patient
  • a new way of handling consultations
  • a new way of handling their practice
  • sharing power

It is not clear at present whether equalities legislation applies to the activities of organisations like Patient Forums which are composed of volunteers. We think that it should, but there are clearly resource implication if people with for example sensory disabilities or lack of English language are to be fully involved. This would require not only, for example, money to pay for interpreters or personal assistance, but also training for those not so disadvantaged in how to work with these communities.

It is very hard to demonstrate value for money because of the difficulty of connecting outcomes to processes and structures. The Department of Health apparently spent £1M on the “Your Health Your Care Your Say” process, and this does seem to have reached people who are not often involved and been regarded as a success, but we cannot expect resources on that scale very often. Involving people from very disadvantaged groups – deaf people for example – can be very expensive, but the most disadvantaged people are exactly the people whose voices need most to be heard. It would be helpful if the Government could clearly define what it wants the system of PPI to deliver. Without this there is no means to judge if the system fails. If such a definition can be produced then we suggest that arrangements should be made to review the operation of the new system in five years time, by which time it should have had an opportunity to prove itself.

A great deal of money is presently spent by individual NHS institutions on one off consultation processes. Often the outcome is predetermined and the consultation is a waste of time and money. Often there is little useful information provided (especially about money) and the consultation documents are bland and evasive if not downright dishonest.

We would argue that PPI structures need to demonstrate first independence and second continuity. We deal with independence below. Continuity should extend in time, in personnel, in place, across institutional boundaries, and across communities. What is needed is a mechanism which can connect communities of various kinds to the decision making structures and which transcends institutional boundaries in a way which provides resources independent of the interests of the various institutions. Only small numbers of people will have a continuing involvement with these mechanisms but there need to be ways for the wider community to raise concerns and to enable communication with the public. Organisational stability is important for structures largely populated by volunteers. It requires a considerable input of time and effort by lay individuals to begin to comprehend the NHS. It is particularly important for the PPI organisations to have a collective memory given the transient nature of many health organisations and this is largely provided by the employment of professional staff. We would like to see some investigation of differing practices in Scotland and Wales to see if lessons can be learned across the national boundaries.

3. Why are existing systems for patient and public involvement being reformed after only 3 years?

Because Ministers like to give the impression they are doing something, because the systems they established in England in 2003 have not been very effective and because it is now quite clear that the abolition of English Community Health Councils was an expensive mistake. Regardless of the reason for this change we hope that more will be taken over the process this time. It is important to retain the skills and experience of staff and volunteers and the records of organisations. We see no reason why CHCs could not have been reformed, nor why Patient Forums have to be abolished when they also could have been reformed.

4. How should LINks be designed?

Remit and level of independence

The remit of LINKs should extend to health and its wider determinants, as well as health and social care.

If LINKs are not perceived to be independent they will have no credibility. Under the present proposals the most obvious threat to their independence is their relationship with the sponsoring local authority who will be responsible for managing the contract under which the support staff are to be employed. Experience tells us that some local authorities are capable of manipulative behaviour when local political interests are involved. Under the CHC regime it was not unknown for voluntary organisations’ funding to be threatened if their representatives did not vote the way the local council wanted them to. It is therefore important that the process of managing the contract is protected from political interference by establishing a transparent process and a fixed timetable – we suggest contracts should normally last for five years and any change should be agreed by the LINK, and not just by the local authority. As an additional safeguard, the contract should not be awarded to any existing group which enjoys major funding from the local authority concerned.

Membership and appointments

It is not clear what is meant by membership of a LINK organisation, given that there are to be both individuals and organisations in membership. The Department of Health envisage a LINK as a network. For many purposes a flexible participative process will be necessary and desirable, but there may be times when a decision will have to be made about which there will be different points of view. It may be necessary to define a core membership in order to permit democratic decision making. We would suggest that there should be a requirement that every person who participates in the work of a LINK should be required to be normally resident in the area of that LINK (although of course the work of a LINK may lead to investigation of services provided for their residents by organisations many miles away). We would not want to see a system whereby people represent organisational interests as a member of a LINK nor any kind of block voting system.

It may be better to accept that membership is entirely voluntary and self selecting rather than to establish some sort of vetting body which has been a source of substantial problems for Patient Forums. This would mean that the collective voice of a LINK would only have more weight than the voices of the individual members if it could demonstrate wider involvement, particularly of disadvantaged groups, or enhanced expertise. In reality the response of a LINK to many consultation processes will be based on the experience and knowledge of its members. There will never be sufficient resources to involve the wider public and the most disadvantaged people in every issue. We suggest that if LINKs make official responses they should be required to state what processes informed the production of that response. We would envisage that all lay people who have any sort of representative role in the arrangement of health or social care services in the area would automatically be a member of their local LINK.

It is important to recognise the increasing diversity and fluidity of the voluntary sector if these organisations are to be brought into LINKs. Many voluntary organisations will have financial interests in the provision of services in their area and it is important that these interests are declared and that these interests do not contaminate the voices of voluntary organisations representing their communities. Under previous legislation NHS employees and contractors were not allowed to be members of CHCs or Patient Forums. If such a prohibition is to continue then it should probably extend to any person with a financial interest in the provision of health or social care services in the area of the LINK. If the prohibition is abandoned then there will need to be a mechanism to register the declaration of interests. It will be very important that LINKs adhere to the Seven Principles of Public Life established by the Nolan Committee and it will be necessary to ensure that there is some mechanism for dealing with complaints about this. There may be lessons to be learnt from the experience of the Standards Board for England.

We think that there is considerable potential for using internet based mechanisms for collecting the experience of patients, helping people to communicate with each other and to enable, for example, people who are housebound to participate.

Funding and support

LINKs need to be in a position to employ professional staff with experience in community development and of how the NHS and social care work. They will also need people with good IT skills. It may be helpful for one organisation to support several LINKs, or for specialist organisations to deal with particular aspects of the work over a wide area. There needs to be organisational stability and a career structure if highly skilled staff are to move into this work. The staff should be accountable to the LINKs whose members should be involved in any appointments.

We would want to see a very transparent funding regime. On balance we think funding should be directly related to population and not weighted for deprivation, rurality or any other factor. If there is a national budget of say £25 million for the population of England that works out as approximately 50 pence per head per year. Such a simple formula would make it easy to see whether the money is reaching its intended destination. We suggest that if it is thought proper to make specific funding provision for particular sorts of deprivation or activity that this should be provided separately. We do not see that it would be possible to produce a formula which would take account of all the different factors which might make involving people in a particular area more expensive than the average. We see no reason why service providers or commissioners should not pay LINKs to conduct consultations or other projects on their behalf just as they often pay freelance consultants now, although we might need to ensure that the independence of the LINK was not compromised.

Areas of focus

We would wish to see LINKs have a wide remit to deal with all sorts of health and social care topics in their area – including all those issues which affect the health of a population but are not the direct responsibility of the NHS.

We would envisage LINKs as having a particular role in fostering the development of local involvement mechanisms, in particular localities, among particular communities or with individual practices or providers. This should certainly extend to an involvement with Practice Based Commissioning which up to now has had little patient involvement.

Statutory powers

We consider that LINKs should in themselves have some statutory powers over and above the powers available to the public in general. The main legislative change needed is to give PPI representatives more power. They need statutory rights to sit on, speak and vote on all NHS committees concerned with patient care. Patient representatives need support in what is a tough job. On each committee there should always be establishment for at least 2 patient representatives, so that they can support each other. If for any reason a PPI rep cannot be present at any meeting, they should have power to appoint a deputy or a substitute so that there is never a vacant chair.

In addition we would want each LINK to have access to the detailed terms of any contract for the provision of health and care services to people in its area. We understand that there will be objections to this on the grounds of commercial confidentiality but in our view openness is part of the price of undertaking publicly funded work. We would have no objection to some provision making commercially sensitive information subject to confidentiality for a limited period. We think that the proposal to give nominated LINK representatives rights of access to health providers premises on the basis that only those nominated will have CRB checks is a sensible compromise, and that right of access should extend to any provider of services.

One problem which may inhibit the relationship between patients and a LINK is the existence of the systems to regulate medical research. We would wish it to be made clear that enquiries made to competent patients who are capable of understanding by a LINK about their experience of health and social care services does not constitute medical research and does not normally require ethics committee approval.

Relations with local health Trusts

If the NHS is truly going to embrace diversity of provision then we would want to see LINKs relate primarily to the commissioning bodies and for their remit to embrace providers of all sorts. This will clearly include existing NHS Trusts and these Trusts may not necessarily be located in the area of the LINK. The remit of each LINK should relate to the services provided to people resident in their locality, wherever those services are provided. We would expect NHS Trusts to establish positive relationships with local LINKs but in our experience these relationships need effort from both sides. We are glad to see that effective PPI skills are beginning to be regarded as important to NHS managers. We would expect a LINK to establish a group to relate to each significant provider of services for its local area.

National coordination

A national and regional organisation will be very important for the success of LINKs, and the lack of it has contributed to the weakness of Patient Forums. However the national and regional organisations must be answerable to the local LINKs, and not the other way around. Members of LINKs must be enabled and encouraged to communicate with each other across the country so that specialist issues can be addressed. Development of standards of conduct for LINK members for example should come from the bottom up. We would envisage mechanisms whereby representatives of patients of all kinds, including voluntary organisations, at regional and national level would relate to these bodies. We also hope to see the emergence in due course of regional and national leadership capable of expressing the patients’ voice and of coordinating and directing campaigns relating to patients experience so that if some future Secretary of State wants to declare that the NHS has had its best year ever there will be a credible patient voice able, on the basis of evidence, to confirm or deny such a claim.

5. How should LINks relate to and avoid overlap with:

Local Authority structures including Overview and Scrutiny Committees

In our experience Overview and Scrutiny Committees’ effectiveness in relation to health varies very widely according to local political and geographical circumstances. We would like to see measures to bring more of these committees up to the standards of the best, and often this is down to the nature of the officer support provided. We would not want to see the effectiveness of a local LINK impeded by a local authority structure which is determined by its own political interests but we do think that there is potential for LINKs and Scrutiny Committees to work together constructively. However in some local authorities the Scrutiny Committee is incapable of providing an effective challenge to service provision of indifferent quality.

Foundation Trust boards and Members Councils

As yet the impact of the democratic arrangements for Foundation Hospitals is difficult to assess, but most of those involved report that as members or governors of a Foundation Hospital they perform a purely decorative function.. There is clearly potential for using those mechanisms to improve consultation and involvement of patients with hospitals and this may be useful for the relatively small number of people whose care is delivered primarily by a hospital. We would expect Members Councils to relate to their local LINK. However the central political problem in health is the excessive political power and visibility of hospitals, particularly acute hospitals, as opposed to the invisibility of primary and community services.

Inspectorates including the Healthcare Commission

The efforts the Healthcare Commission and CSCI have made to date to involve patients in inspection arrangements are very encouraging and merit further development. We see the Commission as a powerful ally in the development of involvement and we want to see this role strengthened. We would like to see other bodies with inspection rights emulate their approach. LINKS should be recognized as working alongside the professionals in providing lay members for formal inspections. We would hope to see LINKs developing an independent voice for patients who may want to raise concerns different from those developed by official bodies. We also see LINKs as able to react much more quickly to local problems and much more able to deal with problems which cross institutional boundaries.

Formal and informal complaints procedures

The separation of complaints work from the work of patient forums has been a source of weakness as compared to the regime of the best CHCs where complaints contributed to a detailed picture of the performance of local health services. We understand that there are concerns about the confidentiality of complaints procedures but we consider that some mechanism must be devised to ensure that local LINKs (or possibly some designated committee of a LINK operating on a confidential basis) has access to information about complaints which is sufficiently detailed to enable LINKs to know which specific services give rise to complaints. There may also be a role for LINKs to protect patients who complain as there are still widespread allegations of victimization.

6. In what circumstances should wider public consultation (including under Section 11 of the Health and Social Care Act 2001) be carried out and what form should this take?

The proposed amendments to what is now section 242 of the National Health Service Act 2006 appear to envisage much more general consultation than has previously been required, and we welcome that. We hope that the shameful practice where changes required to be introduced by the Department of Health are excluded from the duty of consultation will now cease. However it will clearly not be possible for every change to be subject to substantial and expensive consultation exercises. We would like to see decisions about the arrangements for consultation under section 242 taken locally in conjunction with the local LINK which could take into account a wide range of factors, including the capacity of local communities to respond and the relative significance of various proposals. We would certainly like to see the end of the ritual publication of glossy consultation documents relating to decisions which all those concerned know have already been taken. “The essence of consultation is the communication of a genuine invitation to give advice and a genuine receipt of that advice.” In our view consultation, to be effective, needs to take place early – while the consideration of possible options is taking place. If the proposals for the establishment of LINKs are to be effective we would like to see a situation where those involved in their local LINK are not surprised by the announcement of any proposal for substantial changes of service in their local area because they will have been involved at an early stage.