Cancer patients here in Wales who want to be treated with drugs that aren't normally available on the NHS face a postcode lottery just to have their cases heard, according to a Flintshire woman who has advanced bowel cancer.
She couldn't even apply for her request to be considered.
She's being supported by a former Labour Assembly Member who says there should be an all-Wales decision-making system to end the huge variations across the country.
Former Labour AM Karen Sinclair is now in full remission from cancer and has been given a clean bill of health by her doctors. When I finished interviewing her about concerns over access to new and unapproved treatments, I took the chance to ask her how her recovery was going.
She stepped down as an AM in 2011 after representing Clwyd South since the Assembly began in 1999. I asked her if she missed the Assembly. Her answer might make you smile too!
The Welsh Government says it's looking at changes to the system of decision-making for treatments that aren't normally available on the NHS. It's carrying out a consultation based on recommendations of a Review Group into the system.
A Welsh Government spokesperson said,
The IPFR Review Group looked at the whole IPFR process, including the number of panels. Section 6.2 deals specifically with the latter. In addition, the report contains a number of recommendations aimed at improving inter-panel consistency, communication with patients and strengthening clinical input to the process. The report is now out for consultation across Wales, including patient groups. The Minister will be considering the report's findings and recommendations in light of consultation responses received.
Where a clinician wishes to use a new, novel ... developing or unproven treatment that has not received NICE approval, they can make an application to the Health Board under the All Wales Individual Patient Funding Request (IPFR) process.
These requests are considered by an expert panel. They consider the clinical presentation of the patient (including the stage of their illness and what other health conditions they may have), the evidence base and cost effectiveness of the therapy in comparison with more standard treatments and any ethical issues.
Because each patient is different, each case has to be individually assessed.
This means IPFR cases requesting the same drug therapy or treatment may have different decisions for different patients: specific factors unique to the individual patient mean some people will benefit more than others from a particular treatment.
If an IPFR application is declined, the referring clinician may either submit further evidence to the IPFR Panel, or appeal the decision.
When this happens, a Panel is convened to consider the further evidence or appeal and a revised decision may be made in light of the case made.
We recognise that these decisions are extremely sensitive - the nature of the requests often means that decisions are made at a time when patients are experiencing significant health problems. However, we do need to ensure that drugs, treatments and resources are used where they are most effective not only for the individual patient but also for the population as a whole.
A former Labour Assembly Member has called for decisions on prescribing drugs not normally available on the NHS to be made on an all-Wales basis. Karen Sinclair, who is herself in remission from cancer, criticised what she calls a postcode lottery when it comes to requests being heard.
She insists she's not criticising the Labour Welsh Government but just wants a level playing field for patients in different parts of Wales.
This graph shows the wide variation between health board areas when it comes to the number of requests considered for drugs which aren't normally available on the NHS. These are known as 'Individual Patient Funding Requests' or IFPRs.
The figures are in a report published by Public Health Wales in response to a Freedom of Information Request. You can read the full report by clicking here.
It shows 'a five-fold difference in the total number of IPFR’s for medicines considered at IPFR panels' and a large gap between the lowest number considered (22 at Betsi Cadwaladr UHB) and the highest (104 at Abertawe Bro Morgannwg UHB)
Cancer patients in Wales who want to be treated with drugs not normally available on the NHS face a postcode lottery just to have their cases heard according to a Flintshire woman who has advanced bowel cancer but was told she couldn't even apply for her request to be considered.
After a second opinion, Avril Williams, from Caergwrle, will now have her case heard, but she's told ITV News that the variations are unfair and that there should be an all-Wales system to consider exemptions.