WRITING this column on a regular basis is proving to be ever more challenging as time goes on. So many things have been happening recently that it’s hard to know exactly where to start.

I could write about the sad loss of another friend and brave campaigner to kidney cancer. I could mention an interesting workshop I attended last week about patient involvement in cancer research, of progress with our support group, or of fundraising for a local cancer charity.

However, top of the list, in view of the urgency, is the story about Tony Almond. He lives in Brackley, has liver cancer and has been told that he only has a few weeks to live.

He is trying to get Northamptonshire Primary Care Trust to fund the drug Sorafenib, the only treatment that may give him extra time with his family.

The support from people has been overwhelming, with many offers of financial support to help Tony buy his drug.

I have no doubt he has been truly touched by this outpouring of emotion just as we were when we went to demonstrate at the National Institute for Health and Clinical Excellence’s headquarters in London for Sunitinib last year.

Nice has yet to complete their assessment process on Sorafenib for liver cancer, and as such there is nothing to stop any PCT from supplying this drug now, a drug which is available in many other European countries.

Northamptonshire PCT says the drug is too expensive and yet according to its finance report of September 30, it is sitting on an “underspend” £1.9m, with a forecast end of year “underspend” of £4.6m!

Also, the East Midlands Strategic Health Authority is forecasting a year-end surplus of £100m.

It is not as if they will be flooded with applications for this drug as this is a treatment for rarer cancer types, which thankfully only affect a small minority of the population.

I am still at a loss to know why we are continually being told that funds are not available. I was also shocked to read recently that PCTs are being urged to join a lobby group known as the Commissioning Support Appraisals Service, to influence the type of treatments endorsed by Nice.

The group is already up and running and is being funded with £300k of taxpayers’ money. The lead for this new agency comes from Birmingham East & North PCT.

So, where do we now stand on access to treatments? It appears that the process will now become even more complicated. We will now have Nice (supposedly independent at a cost to the taxpayer of approximately £70m per year), together with representatives from PCTs to give their views on the impact on the NHS.

It is not surprising that many of us with rarer cancers now feel even more vulnerable in that we are being outgunned by continuing strategies which can only further prevent us from gaining access to drugs available in other countries.

Why are we funding Nice at such a high cost to the taxpayer when it will not be truly independent?

No wonder this country still lags behind the rest of Europe with regard to cancer five-year survival rates.