PCT (Primary Care Trust) NHS Funding
An overview by Rose Woodward
Why do I have to apply to get special funding?
NICE – the National Institute for Health & Clinical Excellence – is an organisation which is meant to be independent of the Government and is responsible for appraising new technologies and procedures that could be used within the NHS. NICE decides, through its appraisal process, whether new medicines or technologies are clinically effective, whether they represent a significant advance over current treatments, and if they are a ‘cost effective use of NHS resources’. For more detail please have a look at the NICE website.
Many patients feel that NICE’s independence is not absolute. This is because NICE relies on the Department of Health (DoH) to request them to carry out appraisals. So if the DoH does not make a request to NICE for guidance about a particular drug or procedure then the local health authorities (PCTs in England or Local Health Boards in Wales) are not bound to provide funding for that drug or procedure. In order to be able to prescribe the drug and get paid and to obtain payment from the PCT for the work they want to do, hospital clinicians have to apply to the PCT (where their patient lives) and request special funding.
This process is called exceptional funding or special case funding and also applies to the drugs and technologies which have been referred to NICE but upon which they have not yet published full guidance.
This is the situation that, at the moment, kidney cancer patients find themselves in. The majority of PCTs in England will not routinely fund drugs that have not been approved by NICE. Please see the download in this section called ‘Good Practice Guidance on Managing the Introduction of New Healthcare Interventions’ (PDF, 12 pages - 220 Kb). This is especially true if, like our kidney cancer drugs, they are considered to be expensive. The new generation of cancer drugs such as Herceptin, Avastin, Sutent and Nexavar are known as ‘targeted therapy’ drugs and are considerably more expensive than older chemotherapy drugs or immunotherapy drugs such as Interferon.
It is also fair to point out that cancer patients suffering from kidney cancer, which is defined as a rarer cancer, will find the drugs they need are more expensive when compared to drugs needed by patients suffering from the more common cancers like breast, prostate, bowel etc.
This is because generally the Research & Development (R&D) costs of cancer drugs are similar. Yet the number of rarer cancer patients for whom the drug will be prescribed is relatively small. Because there is a limited number of cancer patients who will use the drugs, the cost will be higher to allow the pharmaceutical company to recover the R&D costs involved in getting the drug to market.
It is up to you and your consultant to make the strongest case possible to the PCT to get funding for your treatment. BUT the PCT process is not easy, it is not transparent, in many cases it is not timely; it is very bureaucratic, the language used is arcane and exclusive and you are being forced into this extremely stressful situation at a time when you are at your lowest ebb, worried about your family, possibly in pain and trying to face up to a diagnosis of a potentially terminal cancer.
Fighting the NHS Primary Care Trust, the very people who are meant to be looking after you and providing your care, is the last thing in the world that you should be doing.
We are publishing all the information in this section to demystify the process, to let you and your family know that you can successfully challenge a PCT funding refusal; that help and support is available from the Kidney Cancer Support Network of patients to help you do this and most importantly, you can call on our experience in over 100 kidney cancer patient appeals.
You are not alone in the battle to get the drugs your oncologist wants to prescribe for you.
Rose Woodward |
