A FEW weeks ago I was invited to attend a private showing in London of a short film commissioned by the James Whale Fund for Kidney Cancer, called Jane’s Journey. The film is worth a look and can be found at youtube.com/ kidneycancerfilms It shows just how Jane and her family are bravely coping with everyday life despite Jane’s cancer.

I first met Jane when she and her daughter came up to support our demonstration at the National Institute for Health and Clinical Excellence in London last year.

Despite already being prescribed one of the new cancer drugs, Jane still came along, as others did, to support our cause. That is the kind of person she is.

Jane was already receiving Sunitinib as she lives in the Birmingham area. Her primary care trust had decided to give her the drug rather than await Nice’s decision on whether to back the drug.

Sadly, here in Oxfordshire, our PCT had decided not to support us in this way, despite there being no other effective treatment. Already, to the best of my knowledge, we have lost at least 12 brave souls from our local support group, over a period of just two years. I wonder just how many would still be alive today if they had been given the same support as Jane.

This whole episode was an utter disgrace, especially here in Oxfordshire, which is a renowned centre of excellence for research.

Local clinicians did what they could to help but their hands were tied. It was made even more perverse by the fact that this policy was decided in the absence of any input from a specialist oncologist and the PCT was in surplus funds.

As regular readers will know, our campaigning effort was finally rewarded when Nice eventually acknowledged the clinical evidence before them, reversed their earlier decision, and decided to recommend Sunitinib for first line treatment.

However, just as we were getting used to the reassurance of knowing that the drug would be there when we needed it, on August 26 another bombshell hit us. Nice issued a statement to say it had now rejected ALL the remaining kidney cancer drugs we have been waiting for.

This means if patients can’t tolerate Sunitinib, or it has finished working, then they have no other treatment options – nothing.

Our clinicians will not have the option to sequentially treat patients as they do in other countries, and for some this means simply being left to die. This makes me so frustrated and angry.

One of the patients at the Nice appeal said that “being given a diagnosis of a terminal cancer is not the worst news in the world – being told there is a treatment available but you can’t have it is far worse”.

I have met so many brave and caring people like Jane on this dreadful journey. Seriously ill patients should never again have to spend their last months fighting for access to treatments, which are readily available in other countries.