NPC Archive Item: “No decisions about us without us”? Individual healthcare rationing in a fiscal ice age

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6 July 2011

In June 2011 an analysis was published in the British Medical Journal entitled ”No decisions about us without us”? Individual healthcare rationing in a fiscal ice age. In it the authors examined whether patients and the public should be involved in rationing decisions about individual patient access to healthcare interventions.

Commissioning organisations within the NHS in England are required to make decisions on the funding of drugs and treatments locally whilst managing a finite budget. The most difficult of these decisions can be individual funding requests (IFRs) as they fall outside of agreed commissioning policies. They involve making decisions about funding a treatment for an individual patient rather than a population and can sometimes generate a high level of media interest. IFRs are submitted to a commissioning organisation by a patient’s clinician. They can highlight the conflicting roles healthcare professionals, NHS managers and lay members of a panel can have as both public servants and patient advocates. The paper emphasises that although the numbers of IFRs are relatively small they have a substantial effect on patients, their clinicians and take up a great deal of managerial time.

The analysis first looks at the evidence on the differing opinions of ‘bedside’ rationing and the process of shared decision-making, informing the patient of all available treatments for their condition whether or not they are routinely funded by a commissioning organisation. The authors then cover the actual IFR process and how involved a patient should be. They found that practice varies between PCTs with some not allowing patients or their clinician to make direct representation to the IFR panels, some allowing written representation and occasionally some allowing patients to make representation in person to the panel. The analysis also found that lay membership of panels varies between PCTs but that in 2011 IFR panels are increasingly seeking to include them in some way.

The authors state that the paper is not intended to offer guidance on how to involve patients and the public in IFR decisions but to highlight gaps in evidence and ethical controversies in order to open up debate on this topic.

Whilst this paper does not make recommendations it does highlight the variation in practice around the country. Organisations involved in making IFR decisions should ensure they have robust processes open to public scrutiny. They may find it beneficial to review their processes, if they have not done so recently, to ensure they are fit for purpose.

How does this relate to other publications or evidence?
The NHS constitution states that “You have the right to be involved in discussions and decisions about your healthcare, and be given information to enable you to do this”. It also states that “You have the right to expect local decisions on funding of other drugs and treatments to be made rationally following 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”. The Government has recently stated in its response to the NHS Future Forum report that all of the patient rights within the NHS Constitution will be further embedded within the way the NHS works and steps taken to ensure these rights retain the same legal force under any new legislation. This places a responsibility, both in the present and future, on clinicians and commissioning organisations to ensure patients are fully informed and involved in treatment decisions and that processes followed are consistent with these rights.

The good practice and other resources contained within the NPC document “Supporting rational local decision-making about medicines (and treatments) – A handbook of good practice” can help PCTs to review their current decision-making processes for the funding of medicines.

The NHS Constitution gives patients the right to expect local decisions about the funding of drugs and treatments to be made rationally. To support local decision-making processes about the funding of drugs and treatments the Department of Health and the NPC published “Defining guiding principles for processes supporting local decision-making about medicines” in January 2009. The NPC followed this with the publication of a handbook of good practice in February 2009. Both of these publications aimed to help improve the consistency and quality of local decision-making on medicines within the NHS in England.

The NPC has also developed e-learning materials to support the local decision-making process around medicines. These materials cover:

The NPC also encourages the sharing of resources to support the local decision-making about medicines via a password protected area of its website and the sharing of practice via a separate dedicated area of its website. Resources for sharing should be submitted via the website.

More information on local decision-making can be found on the local decision-making area of the NPC website

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