Memorandum by Professor Christopher Newdick
NHS PRIORITY SETTINGASSESSING THE
RISKS OF THE NHS CONSTITUTION
This paper assesses the risks presented to PCT
priority setting policies by the NHS Constitution.
1. THE RISK
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
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.
2. THE NHS CONSTITUTION
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
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
|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.
3. THE NHS CONSTITUTION
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,
to have a reasonable system for prioritising
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
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
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.
4. THE NHS CONSTITUTION
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
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
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,
(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.