Angela’s Story

My husband, Gary, was diagnosed with kidney cancer at the end of March 2008. He had an uncomfortable ache in his side but no other symptoms. After a week’s treatment for a urine infection and possible kidney stones he was referred for an ultrasound scan which revealed the cancer. At the point of diagnosis the tumour was 9cms and had spread to nearby glands, there was cancer related fluid in the abdominal cavity and nodules on both lungs. The tumour had ruptured hence the extensive spread.

Because of the severity and extent of the spread, surgery was ruled out and both the Oncologist and Urologist recommended Sutent as the only course of treatment. An application was duly made to Bristol PCT by the Oncologist, our GP and ourselves.

After delays on their part the case was considered on 27th May and rejected on the grounds of insufficient exceptionality.

We then started to prepare for an appeal. We contacted Kate who told us to ask for copies of the minutes of the previous meeting, along with the qualifications of the people who made the decision. This information was invaluable as it revealed inconsistencies and formed a large part of our appeal. We sought and got excellent support from our local MP, Kerry McCarthy. She pursued and harried the PCT relentlessly on our behalf. In addition to the Oncologist’s appeal we submitted a battery of supporting statements from my husband’s employer, friends who presented individual statements, our GP and ourselves. We were given a date for the appeal more quickly than I had anticipated just 3 days after the 28 days allocated to decide whether or not to grant an appeal. We then wrote another submission to be read at the appeal hearing and got further support from Kate and Rose Woodward who I had contacted when Kate was away. The information was incredibly helpful to us in structuring our submission. We spoke on the phone just before the hearing and Kate put us in touch with someone who had recently undergone the appeal process successfully.

Three days before the hearing, Gary decided to go to the media. I had been worried that this might antagonise the PCT panel, but recognised that Gary needed to do this to try and regain some control over what was happening. He rang Radio Bristol, was contacted by a presenter that day and the interview went out that evening. The following day our MP mailed us saying that the Bristol Evening Post wanted to run a local story (it was the week of the NHS’s 60th anniversary). Another interview took place and was in the early morning edition of the Bristol Evening Post on the day of the appeal hearing. Immediately after the hearing the local BBC news programme (Points West) interviewed us outside the PCT headquarters. I would now recommend anyone to use the local media – it boosts morale and, I believe, concentrates minds wonderfully.

The appeal meeting lasted about 45 minutes. We told them that Gary would be making his statement and that I would be making the presentation. At first we were told that we would have about five minutes each, we told them we needed more like half an hour. They agreed without demur and we made our case. Gary’s was the more emotional and mine the objective assessment of ours v. their case. At the end two questions were asked – what did we think that Sutent could achieve, and could we say more about the hope that, if successful shrinkage were to occur, then surgery would be a possibility. We answered the first but not the second question, stating that they would need to ask the Urologist about that.

At the end they told us we would be informed by post within a week. We made it clear that we wanted to know as soon as they made a decision and they agreed to e-mail us the following morning. We left the building at 12.30 and just after 2.00 they rang to tell us we’d been successful and that they had already contacted the Oncologist to arrange for the medication to become available immediately. Gary started the Sutent two days later. The letter confirming the decision arrived one week later and had no conditions attached.

I would recommend anyone to pursue an appeal but be prepared for the amount of work and stress entailed. Getting the model submission from Kate was enormously helpful, but you need to summon every last ounce of effort to fight. It is essential to go into the appeal believing in your case and whilst not presenting as aggressive or unpleasant, make it absolutely clear that you will fight this to the end. I had the distinct feeling that they weren’t used to being questioned or challenged directly. If you have a clear case, as everyone does, and present it firmly, they seemed, in our case,  almost to recoil. We told them that we would, if necessary, go to Judicial Review – quite how we would have financed this I don’t know, but they don’t know about the state of our bank balance. Hopefully, NICE will stop this postcode lottery soon, but in the meantime if you need to, just go for it.