Select Committee on Health Written Evidence


Evidence submitted by Richard Stein, Leigh Day & Co (PPI 169)

INTRODUCTION

  1.  Richard Stein is a solicitor and partner in Leigh Day & Co, Solicitors. This London based practice carries out a wide range of public interest and claimant litigation on behalf of individuals and NGOs.

  2.  Richard Stein has for 13 years specialised in claimant judicial review, challenging decisions of government departments, local authorities and quangos on behalf of individuals and local and national voluntary sector groups on topics across the whole spectrum of functions carried out by the state.

  3.  Amongst his particular areas of specialism is the range of issues which concern patients both as individuals and groups within the NHS. As part of this work, he has advised and represented a wide range of groups and brought a large number of challenges to failures by NHS bodies to carry out lawful consultation. These include the cases of R v North East Devon Health Authority ex parte Pow and others (1997), R v Worcestershire Health Authority ex parte Kidderminster and District Community Health Council (1999) and Smith v North East Derbyshire PCT (2006). He is currently conducting a range of other judicial review cases in the High Court relating to questions concerning the application of (among others) section 11 Health and Social Care Act 2001 (HSCA). He has advised on a much larger number of cases in which pre-action letters reminding NHS bodies of their consultation duties has resulted in decisions by those bodies to reconsider and to consult lawfully.

Why is patient involvement particularly important within the NHS?

  4.  The structure and nature of the NHS makes the need for patient involvement in its decision making particularly vital. The lack of direct public accountability of the structures of the NHS is a major factor. This is particularly problematic in view of the requirement imposed on NHS Trusts to adopt local priorities within the national policy framework. As a result we have local bodies which are at the same time unresponsive to local concerns while at the same time setting local priorities based on their assessment of local needs.

  5.  Patient involvement is particularly important within the National Health Service because of the relationship the public has with it. The NHS is a safety net which we all rely on, even when we are well and not currently using it. The fact that it is there and that we can rely on it looking after our needs and those of our families and friends at a time of crisis is a major comfort. Whether the NHS likes it or not, patients have views of their own on how the service ought to be configured and delivered. It is quite possible that these views are frequently ill informed and out of date. However, unless patients are brought along with fundamental changes being made, they will cause huge anxiety and can provoke levels of public discontent not frequently seen in Britain. Hospital closure proposals have, as members of the Committee will be aware, provoked local demonstrations all around the country. We have recently even seen government ministers demonstrating against local decisions which implement government policy and at least one Member of Parliament was elected because of his stance on the downgrading of the local hospital.

What attempts were made to change the NHS culture?

  6.  At the beginning of the millennium, the need to create a new partnership between the NHS and patients & public was recognised by this government. They acknowledged that over a number of years, the NHS had developed a particular culture of secrecy. Significant decisions were being made in private wherever possible and there was almost no recognition that patients and the public have any contribution to make to the setting of priorities and decision making.

  7.  An important part of the attempt to change this culture was the enacting of section 11 Health & Social Care Act 2001.

  8.  The provisions relating to Overview and Scrutiny (section 7 HSCA 2001 and Regulations made under it) were functions which replaced (at least to some extent) the functions of the abolished Community Health Councils. The section 11 obligation was a new attempt to address factors mentioned above and a clear recognition by government of the imperative for patients to feel engaged with the way that their health service was developing.

  9.  At the time of this change, the government was feeling optimistic about the future of the NHS—with massive increases in NHS spending planned for the following years. A more open and involving approach was welcome. Perhaps, not surprisingly, it was felt that asking people what they thought about changes was something that would be easy at times when the health service was to be improved and modernised. All of this is reflected in the wording of section 11 and the Department of Health Guidance Strengthening AccountabilityInvolving Patients and the Public (February 2003)

http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/Publications PolicyAndGuidanceArticle/fs/en?CONTENT—ID=4008005&chk=rVmyFE, which was introduced to explain how to implement it.

  10.  In addition to this, the Cabinet Office Code of Practice on Consultation, issued in January 2004, also demonstrated that the government recognised the need for more extensive and coherent public involvement in important public decision making. Bodies such as the NHS were expressly brought within the scope of the Code.

  11.  The wording of section 11 HSCA 2001, is, perhaps, rather incoherent and repetitive, but on any reading the intention is plain. Patients or their representatives are to be "involved" in virtually any deliberations within the NHS which might impact on what is delivered, how it is delivered and by whom. The obligation is notably framed in very wide terms—it goes beyond a simple (and more traditional) obligation formally to consult before taking decisions. The fact that consultation is required across the full range of planning and from the earliest point in the development of ideas and proposals is—quite rightly—clearly reflected within the Guidance.

  12.  David Lammy, the then Parliamentary Under Secretary of State for Health said in the foreword to the Guidance:

    "It is clear to me times have changed. Patients and the public rightly expect to be involved and consulted in all aspects of their lives—they are more likely to ask questions and are less in awe of experts. There are more people wanting to `have a say' in decision-making and public authorities are more open to scrutiny and challenge."

  13.  In the body of the guidance itself (at page 1) it states as follows:

    "`Involving and consulting' has a particular meaning in the context of section 11. It means discussing with patients and the public their ideas, your plans, their experiences, why services need to change, what they want from services, how to make the best use of resources and so on. It is more about changing attitudes within the NHS and the way the NHS works than laying down rules for procedures.

    What is important is that involvement and consultation is adequate both in terms of time and contract and appropriate to the scale of the issue being considered. Part of the involvement process may be to discuss with stakeholders the most appropriate arrangements for any further involvement. For example it may become clear that:

    —  more effort needs to be made to involve the harder-to-reach groups that may be affected by the proposed change or more information needs to be given; or

    —  a formal consultation process lasting for a set period of time is not necessary....

    Patient and public involvement is central to developing any organisation. NHS organisations must recognise and value the benefits of listening and responding to patients and recognise that the patient's experience is the catalyst for doing things differently to improve the way services are delivered.

    Real patient and public involvement is not about ticking boxes, it is about NHS organisations developing constructive relationships, building strong partnerships and communicating effectively. For patients' experience of health services to really improve, NHS staff will need to have ongoing and meaningful dialogue with them, their carers and the public about improving and developing services".

  14.  And then later on page 2, it continues:

    "The new duty is the continuation of a process that will strengthen accountability to patients and the public and make sure there is transparency and openness in decision making procedure. We must develop and adapt health services around the needs of patients and the public which will build trust and confidence between local communities and the NHS."

  15.  We would invite the Committee to read the 8 pages of the Guidance which set out extremely clearly how the new approach embraced by section 11 is central to the NHS. This approach is also embodied in many other publications from the Department of Health at the time.

Why is the distinction between "involvement" and "consultation" so important?

  16.  Involvement requires patients or their representatives to be included as part of all the activities involved in making decisions about the running of the NHS out of which ideas about possible changes arise. Consultation takes place once the need for a change, and possibly even the preferred change option, have been identified.

  17.  The reason why "involvement" rather than just "consultation" is essential in the NHS relates back to the culture of secrecy in the NHS and the lack of direct participation by public representatives in the structures of NHS Trusts.

  18.  As for the people involved, although Non-executive Directors of NHS Trusts are, in theory although not always in practice, appointed from the local community, they are primarily corporate members of the Trust Board, sharing responsibility with Executive Directors for the delivery of the organisation's statutory responsibilities. They are neither representative of nor accountable to the community from where they were drawn. Accordingly, if the public is to feel any ownership of the services delivered by the NHS, it is essential that patients or their representatives are engaged within the process of developing the service and operating the service at every level.

  19.  The Guidance from the Department of Health makes it clear that "involvement" does not always mean a full-blown consultation with patients and public is required. The scale of "involvement" required will relate directly to the scale and nature of the developments taking place within the local NHS service. Minor matters may well require no more than a mention at meetings at which representatives of patients are present. At the other extreme, where large developments are proposed, a full Cabinet Office Code compliant consultation will be required.

What went wrong?

  20.  Unfortunately, in the early years of the millennium when there was optimism about the future of the NHS, the opportunity was not generally adequately grasped to develop the new open, outward looking and patient involving culture advocated by the Department of Health. Decision making in the NHS continued to happen in private whenever possible.

  21.  Against that background, when the going got tougher over the last few years a great retrenchment took place—unsurprisingly, decision-makers would rather take unpopular decisions out of the glare of scrutiny which comes from involving and consulting patients. And so, once it became clear that the substantial extra resources provided to the NHS would not deliver a service to meet all of the needs and expectations of the community, the attraction of involving patients or their representatives was reduced still further.

  22.  In a climate of hospital closures, service reductions and staff redundancies, to achieve spending reductions, it became even less attractive to NHS managers to involve patients or their representatives in their decision-making.

  23.  It is perhaps understandable that whereas managers of NHS Trusts would happily meet with patient representatives to discuss positive developments such as new and expanding services, they would be much less keen to seek their views on cuts and service reductions. In practice, they just don't do it! Unfortunately, such failures have led to a growing distrust by the public of the management of the NHS—ironic given that the NHS itself is such a valued organisation. Accordingly, in situations where changes to service configuration are truly about modernising and improving services, because patients and their representatives have not been appropriately involved in other decisions or in the steps leading up to these decisions, the announcement of such changes which would otherwise be welcomed by patients, are met with disapproval.

  24.  All too often, consultation by public bodies (and NHS bodies appear particularly guilty of this at times) seems like a process undertaken simply to be seen to comply with an obligation to consult, but without any enthusiasm for it and certainly not with any intention to change their minds in response to the views expressed by consultees. This invalidates the consultation—and indeed renders the processes which are gone through both meaningless and manipulative. In effect consultation often feels more like selling a decision that has already been taken rather than genuinely asking for views. That is why "involvement"—and the expectation that involvement and consultation will take place at the early formative stage, before clear options have even been formulated—is so important. The whole approach is patronising and fails to recognise the contribution patients' experience makes to improvements in the service.

  25.  A particular example of this has arisen recently in Hemel Hempsted, where the proposed downgrading of Dacorum Hospital to a community hospital has provoked substantial concern and unrest locally. (This is now the subject of judicial review proceedings—Bullmore v West Hertfordshire Hospitals NHS Trust). Here the Trust employed consultants to "manage" the consultation process. The placing of the consultant between the Trust and the public has substantially added to the local disquiet about the proposed changes.

  26.  As a result, over recent years, there appear to have been large numbers of important changes to service provision which have been made without complying with the obligations to involve patients or representatives under section 11 HSCA. Leigh Day & Co have been involved in resisting attempts to make such changes in secret and rushing them through without patient involvement. Although some have attempted to front out a legal challenge, most Trusts have, once they have received legal advice from their advisors, backed off and decided at that stage to carry out proper patient involvement under section 11.

  27.  Another worrying area is the attempt to run down NHS services without transparency in the decision-making and thus by stealth. In many cases, where Trusts are short of money, they will run down the staffing levels so that the only safe step they can take is to close a ward or a service. Such steps are frequently taken without patients being involved in the decisions. Once such services have been closed, albeit on a supposedly temporary basis, they very rarely re-open and the decline takes place without any patient involvement as to the appropriateness of the change. This is seen by many NHS Trusts as a useful device for avoiding their responsibilities to involve patients and public (and also the requirement to consult Health Overview and Scrutiny Committees under section 7 HSCA 2001). When such attempts to bypass the section 11 obligation provoke threats of legal action on behalf or patients, having taken legal advice Trusts frequently decide to back off and carry out the appropriate level of patient involvement and consultation.

  28.  A good example of such events were those which surrounded Hornsea Cottage Hospital in East Yorkshire. In September 2006, without any patient involvement or consultation with the Health Overview & Scrutiny Committee, the Yorkshire Wolds & Coast NHS PCT announced the decision to end in-patient admissions immediately and to close the 12 bed in-patient ward at Hornsea Cottage Hospital temporarily (but indefinitely) on 1 October. The justification for not carrying out their consultation/patient involvement duties was "that the current staffing levels ... are increasing the risks to patients and staff". Following a threat of legal action the decisions were reversed and the statutory obligations were complied with.

  29.  The widespread failure to implement section 11 is not just caused by local panic by local NHS Trusts in the face of their current difficulties. Despite the clear policy imperatives identified in Department of Health guidance above, the attempts to narrow the scope of the obligations under section 11 are supported by the Department of Health itself. This was demonstrated by the approach taken by the Department's lawyers in the case mentioned below Smith v North East Derbyshire PCT (2006). In that case, Counsel for the Department of Health was keen to limit the extent of the obligation as far as possible, in conflict with the wording of his client's own Guidance.

Is the current position under section 11 unworkable and/or inappropriate?

  30.  The meaning and implications of section 11 HSCA 2001 were considered by Mr Justice Collins in his judgment given in May 2006 in Smith v North East Derbyshire PCT. These aspects of the case were not questioned in the subsequent appeal to the Court of Appeal. Mr Justice Collins recognised that section 11 imposed a very wide duty on NHS bodies.

  31.  Although the obligations may superficially seem to be substantial and unduly burdensome, Mr Justice Collins indicated that the sensible approach by a NHS body would be, where in doubt, to involve the appropriate Patients' Forum, as the "experts" in this field. Although this might seems like an extremely onerous responsibility, if the required culture change had taken place within the NHS, ensuring that its decision making is carried out as far as possible in public, the obligation would become a routine one. Providing that patients' representatives are involved, in all but the few decisions which do properly require secrecy, the basic elements of the obligation are covered. It is then up to the patients' representatives to advise the NHS body of the circumstances in which a greater degree of patient involvement is required. Whether or not Patients' Forums or LINKs are capable of shouldering this task is central to this investigation by the Health Committee.

  32.  It is of great concern that even now so many meetings of NHS Trusts that are considering issues of importance to patients and are in no way properly confidential are conducted in private. It is difficult to see how it can be justified to fail to include patients' representatives in such meetings as a matter of course.

  33.  Perhaps of even greater concern is that, if anything, the movement appears to be in the direction of increased secrecy rather than openness. As members of the Committee may be aware, the Chelsea and Westminster Hospital NHS Foundation Trust has decided that all of its Board Meetings will be held in private. As a result, all of the important decisions about the nature and provision of health services by this large London teaching hospital, using public funds, will be made without the public having the right even to hear what is being decided, let alone to engage in the process.

  34.  A further area of concern relates to the wholesale transfer of NHS services to independent sector treatment centres (as an example of a "centrally led scheme") without patient involvement or consultation. We note that the Health Committee was advised by the Department of Health in its response to its Report on Independent Treatment Centres (Fourth Report Session 2005-06) (para 66, 69 and 70) that consultation would be undertaken in relation to such decisions. But this has not happened in practice. In fact it has been determined personally by Ministers in the Department of Health that no patient involvement is required under section 11 in relation to ISTCs (the emergence of which post-dates the new "open" world launched by the 2001 Act). This decision is apparently justified by reliance upon the fact that the ISTCs are not promoted locally but at a national level by the Department of Health. However, whether or not that is correct in law, such an approach fails to recognise the fundamental impact that ISTCs will have without any doubt upon the local configuration of NHS services and accordingly are caught by section 11.

  35.  Whether or not patient involvement is required in relation to ISTCs is the subject of litigation and will be considered by the High Court in the context of ISTC provision in North Bristol. The case of Fudge v The Secretary of State for Health and others will be before the court in late March 2007. And, of course, even if the court holds that s11 is technically not engaged in such a case, the Department's stance represents a huge departure from the spirit of public involvement which the 2001 Act was supposed to bring about (as well as from what it told the Committee). Nor, in our view, can it be said (as the Department has claimed) that public consultation and involvement could not take place in relation to the bringing forward of ISTC proposals. For example, the Department, in conjunction (albeit behind the scenes) with SHAs and PCTs, frames the regime (including, for example, the "case mix") which the independent sector is then asked to bid to undertake. Such decisions could—and should—plainly be informed by local patient views.

  36.  No patient involvement or consultation was carried out in relation to this or other decisions relating to ISTCs. It is perhaps surprising and also of concern that the Secretary of State for Health is so reluctant for the NHS to engage with local patients and their representatives about what is such an important plank of her strategy for modernising and improving the NHS across the country.

  37.  Another similar example of concern is the decision at Lymington in Hampshire. As the Committee may be aware, on the 21 December 2006 it was announced that the new PFI Lymington New Forest Hospital due to open in the spring of 2007 would be entirely run as an ISTC. The services provided will not just be elective services as have been covered by other ISTCs but will include emergency and all other services delivered at that hospital. The whole proposal had been developed in secret with no patient involvement or consultation. Again, it is surprising that the announcement of such an important development of government policy has been effectively buried in the Christmas shopping period.

What can be done to avoid litigation?

  38.  We have been asked to address this specific question. The obvious and straightforward answer is for the NHS to carry out its obligations under section 11—to involve patients in its decision making processes. As has been made clear above, all this requires is a change of culture from secrecy towards openness. Just as local government has, over recent years, become better at open and transparent decision-making, so too now must the health service. The legal challenges brought in this field very rarely relate to the substance of the decisions made by the NHS bodies. These are generally simple procedural challenges which succeed because of the failures by NHS bodies to carry out their obligations to involve and consult. Providing that these obligations are carried out properly and all representations and other factors are properly considered, it is extremely unlikely that there would be any basis for challenging the outcome of the process, however unpopular.

What is the impact of the proposed changes to section 11?

  39.  The proposal to limit those measures which require patient involvement under section 11 to those which are "significant" is, in our view unhelpful. It is difficult to see how any measure which is of concern to patients can be "insignificant". It is hard to see how such a change would have a real impact on the scope of section 11. The approach of Mr Justice Collins in his judgment in the Smith case and the new culture embodied in the Department of Health Guidance will still apply. More helpful would be a renewed commitment from Ministers to the change of culture embodied in section 11 and the Department's Guidance.

Should Patients' Forums be replaced by LINKs?

  40.  Our involvement with Patients' Forums has been indirect and accordingly we do not have detailed evidence to give the Committee on how they should be developed.

  41.  The structure which provides the framework for patients and the public to engage with the NHS structures is clearly central to the success or otherwise of the culture change to deliver a patient focussed service which is so vital to the future of the NHS.

  42.  At present, in our experience, Patients' Forums are rarely effective in providing a patients' view to the NHS. This would seem to us to be due to of a range of factors, including the following:

    —    Inadequate financial resources and organisational support.

    —    Lack of expertise in health related matters.

    —    Failure by local NHS bodies to encourage or enhance their status as important parts of the local NHS decision making structures or to develop their capacity to engage effectively.

    —    Frequently ineffectual and dominated by unrepresentative individuals with their own hobby horses to ride.

  43.  Any changes to Patients' Forums must therefore enhance their effectiveness in representing the views and concerns of patients to NHS Trusts.

CONCLUSION

  44.  The NHS is widely considered to be in crisis. The government has a different view and considers rather that it is going through a difficult process of "creative disruption," a modernising transition which is essential for its survival. Which ever of these views is true, one of the major failures of the NHS over the last few years (and a large contributor to the feeling of crisis) has been its inability to engage the public in serious debates about its future. As was recognised by this government when it introduced section 11 HSCA a patient centred approach is essential to the future of the NHS. Section 11 is central to achieving that. Even though it may be a difficult transition, avoiding it is not an option.

Richard Stein

Leigh Day & Co Solicitors

19 February 2007





 
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