Every week we hear another depressing story in the press about the “postcode lottery”. From Alzheimer’s to macular degeneration and most recently cancer drugs – this is a real problem within our NHS system.
The postcode lottery is created by the commissioning process set by government (see NHS Legislation). The government believe that NICE puts a stop to the postcode lottery by recommending what treatments should be funded on the NHS – however in practice it actually creates it.
NICE can take up to three years to appraise a treatment. In the interim it is the decision of local Primary Care Trusts as to whether they are willing to fund it for their patients.
There are 152 Primary Care Trusts (PCT) in England. In Wales and Scotland they are called Local Health Boards. They are responsible for the local commissioning of services and treatments for their geographic region. They have set directives from the Department of Health, although they are in control of their own budget and can make their own priorities with regard to treatments for patients under their care.
It became obvious during my fight for Mum’s treatment that there was a huge disparity in access to the kidney cancer drugs Sunitinib and Sorafenib, Sutent and Hexavar. Nearly half of the PCT’s allowed patients to access the drugs prior to the NICE decision – the other half did not. This caused absolute anguish for patients, families and Oncologists who were furious they could not treat their kidney cancer patients with the best treatment.
Each PCT will have an “Exceptional Case/Individual request” policy. This procedure provides the mechanism for patients to access non NICE approved treatments or those awaiting NICE appraisal. However, it is a virtually hidden process and very bureaucratic and legalistic. I have now written over 200 appeals and each PCT has a different policy. Many patients find it hard to understand that a PCT manager, not an oncologist, will make the decision as to whether they can access a treatment recommended by their oncologist. Below I have included policy documents for two PCT’s regarding their “Exceptional Case” procedure.
A major part of the work of the Fund is to help patients and oncologists write exceptional case appeals to their local PCT, please do get in touch if you need support writing an appeal to your PCT.
More than ever each individual cancer patient needs a friend - an experienced navigator in a sea of bureaucracy and chaos. Kate Spall has tirelessly served hundreds of patients to help them achieve optimal care within the NHS. Increasingly the attitude of those making funding decisions within the NHS is passive. If you don't ask you don't get. And how you ask has assumed immense importance to the chances of success. Patient advocacy has never been more important than in 2010. By her work Kate is enhancing not just the quality of care for those she helps directly but also the lives of many other cancer patients.Professor Karol Sikora