Survey reveals sites of potential blockages to Interim Cancer Fund.
A survey in November 2010 of all 146 Primary Care Trusts (“PCTs”) in England PCT conducted by Peter Telford, UK Director of the Kidney Cancer Association (“KCA”) showed that 31 failed to provide or hold any information on their Individual Funding Request (“IFR”) policies.
PCT were issued with guidance in April 2009 to have an IFR Policy and to place it on their website. The IFR Policy tells individuals how to apply to each PCT for funding for unusual treatment including some cancer drugs not recommended by NICE.
“I have compiled a list (attached) of the [named PCT] areas which have failed to provide essential and potentially life saving information either on their website or by correspondence. Delay can be a killer. The PCT were told by the Department of Health on 1 April 2009 to provide this IFR information on their websites. A cancer patient may be confused and exhausted by this process in the [named PCT] areas which failed to respond. This may go some way to explaining why so few – only 200 - patients have been able to seek Interim Cancer Drug Fund money. They are frozen out of the process. This undermines confidence in these areas. I have placed all positive responses on the website www.medlaw.eu.”
27 March 2014
A Patient Powered free to use website.
• Results of a recent survey of the NHS in England reveal more than half Clinical Commissioning Groups (“CCG”) fail to give information to patients on how to get medicines they may need.
• 51% (107 out of 210) - more than half - of patients in England have no easy access to information on how to get treatment which the local NHS may routinely deny.
• NHS England has failed for all 2013 and now 2014 to ensure compliance with its own guidance on transparency of local IFR Policy procedures under which patients may obtain funding for medicines.
• Delaying tactics suspected which may cost lives.
“Peter Telford, Barrister at www.medlaw.eu
“Since 1 April 2013 when the NHS Reforms were introduced, NHS England has allowed local health management to play April Fools on over half the public. Over half are blinding their patients to what they need to do in order to obtain much needed and recommended treatment.”
“NHS local management at CCG level appear to be allowed to continue to use delaying tactics to save money. This is costing people’s lives and inflicting unnecessary harm. It is NHS Englands responsibility to ensure this does not happen. Instead they approved
the formation and continued operation of nearly all 210 CCG (only 20 are still under special measures). It is also offensive to simple logic to deny people the means by which they can complain about being denied drugs they need and which all experts agree they should have. Bureaucracy is being allowed to stand in the way of progress.”
Peter Telford continues:
“The Public have a right to know and be informed about how to access medicines which are currently locked up and hidden in cupboards. The IFR Policy process is the only avenue along which patients can appeal a decision not to give them the medicines they need. Each CCG has a different IFR Policy. Each CCG has to publish and make available its IFR Policy. When this survey was done, we were shocked to find that so many CCG websites did not allow any search of their website and did not provide any link to access their IFR Policy. This is Stone Age thinking by the CCG. Without knowledge for all, only ignorance can succeed.
This reveals a shocking indictment of management to allow ignorance to rule where clarity and clear vision should prevail. It makes a mockery of the educational aims of Tim Berners Lee in promoting the World Wide Web 25 years ago. The CCG are in breach of their duty to patients and the NHS. This is despite being warned about this kind of delaying tactic in August 2012.”
Support for this conclusion came from as high and authority as Professor Sir Mike Rawlins, ex Chairman of NICE. http://www.telegraph.co.uk/health/healthnews/9444015/Sue-NHS-if-managers-deny-approved-drugs-says-Nice-chairman.html
Sir Michael Rawlins, chairman of the watchdog, said “numerous trusts” were “acting unlawfully” in denying patients Nice-approved treatments. Health trusts were wrongly using “delaying tactics” before allowing them, to save money, he said.
Sir Michael urged patients not to stand for such behaviour, saying courts would without doubt side with them.
He made clear his comments in a piece for the Health Service Journal about problems many patients were having accessing a Nice-approved treatment, called dexamethasone intravitreal implants, for the common eye condition retinal vein occlusion. Installed every six months, the implants help prevent sight deterioration.
He said: “Quite clearly numerous trusts are acting unlawfully. They are denying patients an innovative and cost-effective treatment, recommended by Nice, that significantly improves their quality of life.
“The reason, of course, is that trusts do not wish to use their resources in this manner. Although they know that are required to make Nice-approved products available, they introduce delaying tactics.”
Results of Internet Searches conducted by www.medlaw.eu
between 22 and 25 March 2014.
Survey of 210 CCG in England. Searches of each CCG website were made using the words “Individual Funding Request” and Individual Funding Requests”.
Results were obtained as follows:
107 CCG = No such item
103 = Yes, followed by immediate on line website reference to the Individual Funding Request Policy.
The full Table of Results with all local results can be obtained from www.medlaw.eu
in .pdf format or by applying to firstname.lastname@example.org
or call 07812192832.