29 October 2008
Patients struggling to get funding for drugs not approved by NICE through their local health authority are forced to navigate an often impossible system, according to new research launched today by Macmillan Cancer Support.
"It's awful that just when you need the NHS to be fighting for you, you have to deal with a system that is complex, cold and confusing. You are given very little advice on where to turn. It's hard to find the strength to take all this on," said Sandra Woodward, a cancer patient.
The process, most commonly known as exceptional funding, has 84 different names, is often not publicised, and lacks any consistency in decision-making.
Macmillan's survey of Primary Care Trusts (PCTs), through the Freedom of Information Act, found the lack consistency in how they decide to give exceptional funding for patients is fuelling the 'postcode lottery' in the NHS.
Macmillan Cancer Support is calling for national guidelines for the exceptional funding process to make the system open and fair for patients who have been refused access to treatment.
The survey of PCTs in England found that:
Only a third of PCTs (38%) actively promote the exceptional funding process to patients?
Only half of PCTs (49%) deal with applications for exceptional funding (from application to decision) within a month – the slowest rate in the four nations
Less than a tenth (6%) of PCTs have an oncologist in their expert panel
There is no consistency amongst PCTs over what factors they take into account when deciding cases, with some taking non-clinical factors into account. For instance:
i) three quarters of PCTs (76%) take the cost of the treatment into account
ii) two PCTs admit they take into account what point in the financial year it is, and
iii) ten PCTs said they either definitely or probably take into account local media publicity when deciding whether to pay.
Mike Hobday, Head of Policy at Macmillan said:
"The exceptional funding process must be made more consistent across the NHS. The differences amongst health trusts in how they provide exceptional funding is fuelling the 'postcode lottery' in the NHS.
"All we are after is a level playing field. We want patients in Sidcup to have the same access to treatment as patients in Scarborough.
"At the moment the patients themselves have to navigate a system that has 84 different names, is often not actively promoted, and takes too long. We want to see national guidelines put in place."
Macmillan wants all PCTs to actively promote their exceptional funding process to patients; ensure the system is transparent; and that the expert panel is made up of people from relevant disciplines, with clinicians included as well as commissioners. In order to do this Macmillan is working with the NHS Confederation.
Notes to Editors:
1. Macmillan surveyed all local health authorities in the UK via a Freedom of Information request to discover how many PCTs in England have a formal exceptional funding process, what it is, details about the decision making panel, how much it is used, patient criteria, and if they publish information on the process.
2. 108 out of the 152 PCTs in England responded to the FOI survey.
3. Nice and exceptional funding: there is a finite budget for the NHS and it is the job of NICE to consider both the clinical and cost effectiveness of treatments and issue guidance as to whether PCTs should fund them. If NICE issues positive guidance on a particular treatment, PCTs across England have three months to make arrangements for funding. When NICE 'turns down' a treatment - judging that the NHS should not fund it – or there is no NICE guidance, it can be difficult for clinicians and patients to gain access to these treatments.
Amongst PCTs a system is in place which allows individual patients to apply for a treatment that is not usually funded by the PCT. These systems are all called different things, but for the purposes of consistency we use the term 'exceptional funding' because this is the most popular name used in the media and in parliament.
4. Examples of the different names for the process are: Bespoke Care Panel; Contract Exclusion Panel; Prior Approval Process; Exceptional Treatment Process; Extra Contractual Referrals; Complex Decision Process, and Special Cases Panel. Some PCTs had no name at all for it.
5. There are also breakdowns for Scotland and Wales.
Macmillan press office – telephone: 020 7840 7821.