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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.
Adrian Masters reports.
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,
Betsi Cadwaladr University Health Board has issued the following statement regarding concerns over variations in the number of requests it considers for treatments which aren't normally available on the NHS.
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)
Avril Williams from Caergwrle in Flintshire has advanced bowel cancer and believes the drug Avastin, which isn't normally prescribed by the NHS, would benefit her condition.
There are wide variations between local health boards across Wales when it comes to the number of applications considered for such treatments. Avril Williams says that's unfair.
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.
Official figures released under the Freedom of Information Act show large variations between the number of applications for Individual Patient Funding Requests which allow health boards to consider allowing exemptions so that non-NICE-approved drugs such as Avastin can be prescribed.
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.