Eight patients in Herefordshire suffering from rare forms of cancer may have lost their last chance of life after the county’s Primary Care Trust rejected their bids to take rare drugs.
Figures released under Freedom of Information Act requests from the national Rarer Cancers Forum show that Herefordshire’s PCT rejected eight applications, but agreed to fund seven more, after patients applied to have rare drugs supplied to treat their cancers.
The table shows Herefordshire is 13th in PCT percentage rejected rates, with Nottingham City and South West Essex have a 100% rejection rate, while Havering, Wakefield and Shropshire had 0% rejection rates, having allowed all of their respective 60, 83 and 15 applications for rare drugs.
Commenting on what it described as a post-code lottery the Forum said: “More than 1,300 cancer patients have been left to die in the past 20 months because they were not deemed exceptional enough to receive cancer treatment on the NHS.
“They will have been forced either to go without the life-giving treatments or to pay privately for the top-up drugs and risk having all their other care withdrawn.”
A statement from Herefordshire PCT said it carefully considers each case on merit at its Named Patient Panel.
The trust spokesman explained: “The guidelines surrounding the criteria used by the panel to assess eligibility are available on request from the PCT, and will shortly be available for download from our website, www.herefordshire.nhs.uk
“The PCT cannot comment on individual cases, and cannot release the names of the drugs in question to protect patient confidentiality.
“In some instances there may be only one request for a particular drug and this could lead to a particular patient being identifiable.
“There will always be drugs that are licensed as safe to prescribe but have not yet been appraised by the National Institute for Health and Clinical Excellence to determine whether they offer good value to the NHS.
“It is right that PCTs should make the decision on funding for such drugs, taking account of local circumstances and individual cases.
“To ensure there is transparency and greater consistency in the way these local decisions are made, the Department of Health has said it will be establishing a clear set of principles to inform PCT decisions on funding of drugs where there is no NICE guidance, so if a decision is made not to fund a particular drug locally, it is clear why.” The Department and NICE would also ensure that significant new drugs are appraised as soon as possible” after they are licensed, so there is a rapid and authoritative national advice on their issue.
And the PCT was consulting on a proposed patient right to have access to NICE-approved drugs where their doctor agrees that is clinically appropriate.
“Taken together, these measures will help to end the perceived lottery of funding for prescribed drugs”, said the PCT statement.
Meanwhile, Macmillan Cancer Support, whose target of £1.5 million was met by the Herefordshire public to support new chemotherapy units at Hereford County Hospital, said the Forum was “completely right” to highlight the maze that cancer patients are faced with when a treatment, recommended by their doctor, is denied by their primary care trust.
“We have long been calling for PCTs to make their exceptional funding process more transparent so patients know how they can contest decisions.
“Currently there is a postcode lottery as PCT processes vary widely across the UK”, the charity told the Journal.
A draft NHS Constitution could include proposals for guidance “that will make PCTs responsible for informing patients as to why they have made decisions”.
“It is vital that this process is clear and transparent, as people are already in a vulnerable situation when they are trying to access treatments.
“Macmillan will be responding to the consultation to ensure these important proposals are not watered down.
“People affected by cancer can find out what to do if their treatment is not funded on our website, www.cancerbackup.org.uk,” said Macmillan.