Do Scottish patients get a fair deal when they need to access new and often expensive drugs for cancer and other treatments?

Motherwell and Wishaw MSP John Pentland has tabled questions in the Scottish Parliament about access to cancer and other drugs in Scotland, seeking information about how the system of individual patient treatment requests, or IPTRs, is being implemented across Scotland’s 14 health boards. The new system came into effect in April 2011.

In England, the UK government has set up a £200m per year Cancer Drugs Fund as a stopgap measure until 2014, when a system is due to be introduced to make more drugs routinely available there. The Cancer Drugs Fund helps with the cost of new drugs that have not gone through the rigorous and time-consuming process of assessment for routine NHS funding.

In Scotland, IPTRs are intended to be the long term solution to meeting this need. The Scottish Government approach was supported in principle by Labour and LibDem MSPs, and several of the major cancer charities. Questions remain however, about how well the system has been implemented, with campaign groups claiming that Scottish patients are three times less likely to get drugs, and have a lower chance of survival.

Motherwell and Wishaw MSP John Pentland believes that the way the Scottish system currently operates could make it a postcode lottery, and that lack of transparency will reinforce such suspicions.

“Requests can only be made by a clinician. They are considered by a local panel, which while observing national guidelines, also operates a local policy on such requests. There is a clear danger that access to treatment will be a postcode lottery.

“Recent guidance has made it clear that NHS boards are expected to maintain records of requests and outcomes but parliamentary questions are still met with the response that information is not held centrally. Boards are also expected to meet annually to share experiences, but it is not clear what information will be forthcoming to the public generally or to patients about their cases.”

John looked into the system after hearing about the plight of a constituent faced with massive bills for a new cancer treatment.

“The NHS needs to assess new drugs and make sure that treatments deliver results that justify their cost, but from a patient’s perspective, getting early treatment can extend or save lives, while waiting precious weeks for treatment can be a death sentence. That’s why we need a decent and compassionate system that allows access to new drugs while they are being assessed.

“For those who don’t get help, the burden of purchasing drugs can be enormous. Many people struggle to pay 5 or even 6 figure sums for treatment, using up savings and selling their homes. Many simply cannot afford treatment. To add insult to injury, while self-administered drugs are zero-rated for VAT, if patients need help administering their expensive drugs, they have to pay VAT on them.

“The UK Government says that this is because they need a level playing field between the NHS and others. I believe we need a level playing field between patients who can take their own medicine and those who need help to administer their treatment – neither should pay VAT.”

“As my constituent says: ‘you expect to pay VAT on luxury items, but why am I having to pay VAT on something that keeps me alive?’ ”