Published: 20/06/2002, Volume II2, No.5810 Page 32 33
Primary care trusts need to develop strategies for funding individual treatments and, says Diana Austin, it is better not to make these often difficult decisions behind closed doors
Setting priorities is an integral part of public sector decision-making and it involves making a choice, and therefore rationing. Commissioners regularly need to make decisions about the funding of individual treatments. These are a particularly difficult group of decisions because a refusal to fund often means that the decision is made public and there is adverse comment by the media, public, politicians and clinicians.
The decision is never perceived as being one that involves a choice between funding the treatment or something else, so a balanced public debate is virtually impossible. Commissioners find themselves in conflict with individual patients or their carers with whom they often have direct contact - accountability could therefore not be more direct. There is also potential for a court challenge.
Little practical guidance is available for those responsible for day-to-day funding decisions and little, if any, formal training is offered in this field.
Primary care trusts need to ensure that those involved in explicit rationing are trained and fully supported. Proper rationing has benefits for all concerned.
Decisions relating to high-cost treatments and individual cases comprise a fraction of all decisions but take a disproportionate amount of time and energy. Retaining a sense of perspective is important. This is not to say that these decisions are not important - clearly they are - but the more efficient and competent a PCT's system is for dealing with individual treatments and patients, the more time and energy is left to focus on activities which have far greater impact.
Be open and willing to accept that some decisions may need to be changed. There are no right or wrong answers.
do not avoid media attention. Fear of the media makes individuals and organisations vulnerable to emotional blackmail. Patients often threaten to go to the press, and it is best to support their right to do so and encourage them to do what they think is in their best interests. Try to give a clear message to all those outside the PCT that media attention is seen as a welcome opportunity to widen the debate on priority-setting. It is important to appoint a press spokesperson and give them media training.
Cultivate tolerance of hostile and rude behaviour from patients and their carers when in crisis. But do not allow unprofessional behaviour from NHS employees. Sadly, instances of poor behaviour are not uncommon in this area of work. Senior managers have the responsibility to intervene on behalf of junior employees when this occurs.
Build up good relations directly with clinicians and managers.Managing difficult resource issues is easier where good relations exist.
Given the politically and socially ambiguous environment in which commissioners operate, it is very important that the internal cultural environment is right. Emotional support, sharing the burden of decision-making, training and having good systems in place all contribute to better decision-making and risk reduction.
Everyone in this field needs reference to a theoretical framework, including an understanding of the nature of rationing and the legal and ethical principles underpinning it.Most people in the organisation need only to grasp the basics, but it is essential that there is day-to-day access to an individual with expertise. Occasional access to professional legal advice is also a necessity. Basics should include:
Developing a mindset that priority-setting is important and legitimate.
An understanding of the activities which have rationing consequences.
Understanding why organisations make different priority decisions.
The NHS Act as it pertains to rationing, judicial review and the Human Rights Act (1998).
Knowledge of options open to patients. These include the complaints procedure, the ombudsman and legal action under the Human Rights Act, judicial review or civil action.
Ethics related to resource allocation.With this should come an appreciation that seeking to find an ethical blueprint for the allocation of resources is an exercise in futility. It is nevertheless useful to have a checklist of general principles which should be considered in all decisions. These might include effectiveness, and the appropriateness of a treatment.
PCTs need to know which policy options are available to them. These are:
unrestricted access to the treatment;
restricting access without doing so formally;
rationing through the use of selection criteria;
making a treatment generally unavailable (rationing by exclusion);
allowing treatment subject to inclusion in an NHS-funded trial.
Commissioners are legally required to consider exceptions under options three, four and five of the above. There are two main types of exceptions: clinical and social. Clinical exceptions can be agreed when there is an unusual or unique clinical circumstance.Mental health and psychological considerations are more appropriately considered clinical exceptions.
There are also social exceptions. Applications for exceptional funding are often made on the basis that the person has a particular social circumstance such as being employed, being a parent, being young, with the implication that this makes them 'more deserving'. It is extremely difficult to determine social exceptions and great care must be taken to avoid contravening the Human Rights Act or artificially creating a hierarchy of tragedy or worth which does not fit well with equity of access.
Commissioners are often asked for exceptions to be written down in advance. This is best avoided as exceptions, by definition, are unusual. Case law, however, sets precedence. Decisions, as and when they are taken, can be incorporated into a policy in order to build up a list of exceptions.When engaging in exclusion rationing or rationing by selectivity:
Select interventions to be rationed carefully;
Research the issue well;
Never make snap decisions. If an urgent decision has to be made, state at the time that it does not set a precedent;
The more difficult the issue, the more supporting structures, such as collective decision making, formal ratification by the board and commissioners working together, need to be mobilised.
Whenever appropriate, formalise individual decisions into a commissioning policy.
Avoid the management nightmare of developing a written policy which is then not fully funded.
Organisations need to manage actively any programme for developing and reviewing commissioning policies.All the good practice which applies to clinical guidelines also apply here - labelling policies with dates, review dates, contact personnel and so on. Include a circulation list.
Establish a good process for making decisions.
This is the one aspect of rationing on which there is considerable guidance.
Do not underestimate the importance of documentation.The introduction of the Human Rights Act is likely to require funding bodies to demonstrate their priorities and how they came to agree those priorities.This includes the decisions made during the annual contracting round. PCTs are advised to keep an updated list of important developments they cannot afford to fund.
Each organisation should document powers of delegation, such as who can make what sort of decision as part of risk management, and its process of decision-making for individual cases.
Collective decision-making is preferable when faced with a very difficult or precedent-setting decision.When there is a potential problem, officers should always keep the chief executive informed.
Building a bank of case law is important, as is maintaining organisational memory through staff changes and NHS reconfiguration.Always deal with patient issues promptly. If delays are necessary, keep the patient informed.
Remember that anything that is written down may end up in the hands of the patient concerned, the local MP and a journalist. It can also end up in court as evidence or be requested by the ombudsman.
It is useful if commissioning managers and directors have training in 'breaking bad news' as telling patients funding has been declined is often devastating to hear.
Techniques for dealing with difficult - and at times abusive - people are also vital.
Finally, it is important to be open and honest.
Tell patients and the public exactly the grounds on which a decision has been taken.
Retaining one's own personal integrity and humanity goes a long way when dealing with patients. It can also keep you sane when vilification is in full swing.
Dr Daphne Austin is consultant in public health medicine, South Worcestershire PCT.
PCTs should develop strategies for priority-setting and train key staff in handling patients' reactions.
It is important to develop a policy and share it with the community health council.
No attempt must be made to avoid media attention.
Good relationships with clinicians are vital.
PCTs need to develop a mindset that priority-setting is a legitimate activity and support those involved.