Top-up fees - Health Committee Contents

Memorandum by Professor Christopher Newdick (TF 42)


  This paper assesses the risks presented to PCT priority setting policies by the NHS Constitution.


  The NHS Constitution, and the documents which support it, explain rights within the NHS. It has a particular focus on patients' rights within PCT priority setting. Although it does not intend to change National Health Service legislation, or the cases which have considered it, in practice it is likely to have a significant impact on the relationship between patients and PCTs.

  I am concerned that the NHS Constitution clarifies the rights of patients without explaining the duties from which those rights arise, ie the statutory duties imposed on PCTs. To explain one side of the equation without considering the other gives patients a sword with which to attack the hard choices made by PCTs, without giving PCTs an adequate shield with which to explain themselves. This will benefit patients who are able to challenge PCT decision-making, but it will lead to "disinvestment" from patients who do not have the capacity to do so.

  The NHS Constitution enhances patients' rights at the "macro" and "micro" level.


  At the "macro" level, ie with respect to allocating resources to a community of patients, the following two rights in the Constitution should not give rise to particular concern because PCTs should be capable of explaining why hard choices are necessary. Thus, it is reasonable to advise patients that:

    You have the right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence. If the local NHS decides not to fund a drug or treatment you and your doctor feel would be right for you, they will explain that decision to you. (NHS Constitution, Principle 2a).

  This general principle will become mandatory upon PCTs under Secretary of State's "Directions" which require that:

    |each PCT must have in place arrangements for making decisions and adopting policies on whether particular healthcare interventions are to be made available for patients for which the PCT is responsible| Each PCT must compile and publish clear written information outlining the arrangements specified| (Draft Direction to PCTs and NHS trusts concerning decisions about drugs and other treatments 2009).

  This requires PCTs to implement fair procedures that respond to patients equally and consistently. Such a requirement is reasonable and complies with existing law.


  However, I am concerned the NHS Constitution does not properly explain the finite nature of PCTs' duties in respect of priority setting.

  If I have a right to NHS resources, it is because PCTs have a duty. The nature of my right depends on the extent of the duty. The duties imposed on PCTs in respect of priority setting are not infinite. They are, amongst other things:

    —  to promote a comprehensive health service for the entire community,

    —  not to exceed finite annual budgets, and

    —  to have a reasonable system for prioritising resources.

  This recognises that very expensive treatments offering limited health gain to small numbers of patients may not always be funded. Put the other way, if such treatment is funded, it will be at the cost of less expensive treatments which would otherwise be available for patients (what health economists call "opportunity cost").

  However, this fact is not properly acknowledged in the NHS Constitution. It says, for example:

    The NHS is committed to providing best value for taxpayers' money and the most effective use of finite resources (NHS Constitution, Principle 1(6)),


    The Constitution sets out expectations of how patients, the public and staff can help the NHS work effectively and ensure that finite resources are used fairly (NHS Constitution Handbook, 5).

  Only one document begins to address this issue, although it is intended for PCTs (not patients). It says:

    Like all public authorities, PCTs are required to operate within finite budgets and, therefore, have to prioritise some treatments over others according to the needs of local communities| (Defining Guiding Principles for Processes Supporting Local Decision Making About Medicines, 3).

  None of these statements, however, candidly address the problem of finite resources, opportunity costs and the need for hard decisions between competing demands. Explaining the duties of PCTs to "prioritise" (sic, "ration") resources is sensitive in party politics, but if one side of the rights-duties equation is ignored, the NHS Constitution will confer disproportionate benefit on complainants. By emphasising patients' rights alone, the new regime is likely to generate more claims for access to funding, yet leave PCTs without equivalent tools with which to defend the hard choices they are required to make.

  PCTs are unlikely to develop a new appetite for judicial review. Consequently, many of these claims will be conceded without litigation. Since hard choices will still be required, the net losers will be the inarticulate and unpopular groups that tend not to complain; most commonly this means elderly and disabled patients. This will undermine the public health objective of promoting equality of access to NHS care and worsen the problem of "institutionalised ageism" recognised in recent reports.

  Instead, the NHS Constitution should recognise that PCTs are duty-bound not to exceed their annual financial allocations (see s 229, National Health Service Act 2006), and, perhaps, incorporate the statement of the Court of Appeal in Jaymee Bowen's case (Girl B), R v Cambridge DHA, ex p B (1995) that:

    |in a perfect world any treatment which a patient, or a patient's family, sought would be provided if doctors were willing to give it, no matter how much it cost, particularly when a life was potentially at stake. It would however be shutting one's eyes to the real world| to proceed on the basis that we do live in such a word| Difficult and agonizing judgments have to be made as to how a limited budget is best allocated to the maximum advantage of the maximum number of patients.

  By doing so, the NHS Constitution would acknowledge that PCT resources are finite, that priority setting is inevitable and that hard choices are sometimes required. In this way, the argument about balancing the needs of individuals with those of the community will be recognised and understood.


  This imbalance between rights and duties is exacerbated at the "micro"-level by the new approach to individual funding requests. Since 1999, the Court of Appeal has required PCTs to have procedures for dealing with exceptional cases. However, the NHS Constitution tips the balance in favour of IFRs.

 (a)   The Law on Exceptional Cases

  Existing law is unsettled on exceptional cases. Should the PCT's duty be to respond to the needs of the individual patient, or only to reconsider the policy about which complaint is made?

  Some cases say that the duty to exceptional requests should be at policy level. This has the advantage that individuals will not receive an inconsistently favourable response which is unfair to the majority. On this view, public authorities should modify a policy in response to pressing need (even by a small number of patients), but should not normally respond to individuals requests. Thus, in R v Ministry of Agriculture, Fisheries and Food, ex p Hamble (Offshore) Fisheries Ltd (1995) the judge said:

    While the framer of a policy for the exercise of a government discretion must be prepared to consider making exceptions where these are merited, the inclusion of thought-out exceptions in the policy itself may well be exhaustive of the obligation. While any further candidates for exemption must be considered, it will always be a legitimate consideration that to make one such exception may well set up an unanswerable case of partiality or abitrariness. The decision-maker must therefore balance the case for making no such exceptions against the case for generalising it.

  This promotes consistency for all and saves the time and other resources diverted into managing large numbers of individual funding requests.

  However, other cases (especially R v N Lancashire HA, ex p A, D &G (1999)) seem to favour a more individualistic approach so that "blanket bans" will generally be unlawful.

 (b)   The NHS Constitution and IFRs

  The NHS Constitution offered the opportunity to rationalise this process by recommending that "exceptionality" should generally apply at the level of policy-making (even if the number of patients concerned was very small). However, it has not taken this opportunity. Instead it says:

    |a PCT can have a policy not to fund a particular treatment (unless recommended by NICE in a Technology Appraisal), [but] it cannot have a blanket policy, ie it must consider exceptional individual cases where funding should be provided (NHS Constitution Handbook.)

  This will be given statutory force in Secretary of State's "Directions":

    | each PCT must have in place arrangements for making decisions and adopting policies on whether particular healthcare interventions are to be made available for patients for which the PCT is responsible [and include] arrangements for the determination of requests for the funding of a healthcare intervention for an individual, where the PCT's general policy is not to fund that intervention (Draft Direction to PCTs and NHS trusts concerning decisions about drugs and other treatments 2009).

  This will surely encourage everyone refused access to treatment to consider going to an IFR Panel. Hospital doctors and pharmaceutical companies will use the Constitution to persuade patients to do so. This will generate considerable extra activity in IFR Panels. And as PCTs come under pressure to concede these claims, resources will drain away from other areas of patient care.

  "Top-up" payments for NHS treatment also make IFRs more likely. Top-up payments may give patients access to care that would not otherwise have been available within the NHS and on which further claims to "exceptionality" may be based.

  My point is not that IFRs should not exist. It is that they contain "opportunity costs" of their own. If IFRs become the norm whenever PCTs consider a treatment to be low-priority, the impact on the time and resources available for other patients will be considerable.

 (c)   A Right to Attend IFR Panels?

  Existing law does not require IFR proceedings to be open to patients and the public. Rejecting such a right to appear in person, in R(F) v Oxfordshire Mental Healthcare NHS Trust, (2001), the court said:

    A meeting of the forum is essentially a discussion between medical experts. It is not to be equated with a contested hearing, and rules of disclosure which might be appropriate for such a hearing should not be imposed upon the Forum's deliberations |Decisions on funding affect lives [but] that is not a good reason to judicialise them. They are agonisingly difficult decisions, and they will not be made any easier or better if they are encumbered with legalistic procedures.

  However, the NHS Constitution appears to promise that patients will have access to IFR panels.

    You have the right to be involved in discussions and decisions about your healthcare, and to be given information to enable you to do this (Principle 2b, NHS Constitution).

  Indeed, the National Prescribing Centre recommends a further level of appeal against the decision of the IFR, again, to which the patient should have access.

    PCTs should establish an appeals process for decisions made on individual funding requests, including clearly defined grounds of appeal, independent of the original process and open to patients and the public. (Defining Guiding Principles for Processes Supporting Local Decision Making About Medicines, 23).

  (Note, however, that the draft "Directions" do not go so far and say only that:

    Where a PCT makes a decision to refuse a request for the funding of a healthcare intervention, where the PCT's general policy is not to fund that intervention, the PCT must provide that individual with a written statement of its reasons for that decision. (Draft Direction to PCTs and NHS trusts concerning decisions about drugs and other treatments 2009).)

  This "legalises" and "proceduralises" the process. It intensifies the problems inherent in these "agonisingly difficult decisions" and exposes PCT chief executives and medical directors to extreme pressure. Patient groups, the press and the Department of Health, will tend to press for treatment to be funded and many PCT board members will give way. Without support from the NHS Constitution, they will not have the time, or fortitude to argue the complex issues of opportunity costs and community interests. Many claims will be conceded and resources will be disinvested from planned uses to pay for treatments previously considered too expensive to merit funding.


  The NHS Constitution explains the rights of patients without reference to the finite duties of PCTs. This is likely to generate unrealistic expectations of PCTs. If the imbalance is not redressed, we should expect more IFRs appeals and, in reality, a shift of finite resources toward vocal and well-represented groups. Inevitably, this will disinvest resources from planned uses and undermine policies that promote equality of access to NHS treatment.

  Eight years ago, Professor Sir Ian Kennedy criticised the Department of Health. In Learning from Bristol he said:

    Governments of the day have made claims for the NHS which were not capable of being met on the resources available. The public has been led to believe that the NHS could meet their legitimate needs, whereas it is patently clear that it could not. Healthcare professionals, doctors, nurses, managers, and others, have been caught between the growing disillusion of the public on the one hand and the tendency of governments to point to them as scapegoats for a failing service on the other | (Learning from Bristol, 2001, 57, para 31).

  The NHS has received substantial new investment, but priority setting remains endemic to the work of PCTs. The NHS Constitution should be sensitive to Sir Ian's criticism.

February 2009

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