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Russ Jones’s Story

My husband, Russ Jones, was diagnosed with Gastro Intestinal Stromal Tumour (GIST) in March 2006 when he was 61 years old. This is a very rare form of cancer that affects only a few hundred people in the UK every year. GIST is incurable and is resistant to chemotherapy and radiotherapy. The tumours grow initially in the stomach or bowel area and because they grow outside of the main organs they can grow undetected with no symptoms for a long time. GIST is so rare that our family doctor had never heard of it and Russ’s initial symptoms were attributed to a water infection, a groin strain and finally a hernia. After he was admitted to hospital, it took a month after the first biopsy to diagnose his illness and this was in spite of an internal bleed that nearly killed him.

After the shock of the diagnosis, we were relieved to discover that there was a drug available that had an 80% chance of keeping the illness in remission and that there were people alive who had been taking this drug for over five years. Glivec is one of the new target therapy drugs and although there are side effects, they are nothing like as severe as the effects from chemotherapy. Russ started taking the drug, one tablet a day, and things immediately started to improve. The large tumour in his stomach had shrunk by 50% in the first three months, as had all the smaller tumours and Russ began to feel well again. Life resumed as normal and he began to enjoy life with his grandsons again and we went for several holidays and short breaks. The scans that had to be carried out every three months confirmed that all was well and the tumours continued to shrink, not as dramatically as at first, but shrinkage all the same.

In April 2007 Russ began to suffer with backache and a general feeling of being unwell. The scan confirmed what we feared, Glivec had stopped working and the tumours had become resistant to it and were growing rapidly. The oncologist said that they was only one other drug available that might help, Sutent, and she had applied to the local Primary Care Trust for this. However, she was not hopeful of this being approved, as the drug at that time, was not approved by NICE. Meantime, she doubled the Glivec dose and hoped that would stop things progressing too quickly while we waited for the decision of the PCT.

Glivec, which was approved by NICE, and Sutent which was not, cost a similar amount, approximately £3,500.00 each month and Russ was now on 800mg of Gleevec daily as opposed to his original dose of 400mg.  He was on this new dosage for a month and was feeling more ill by the day. His stomach had swelled alarmingly and he had had to be readmitted to hospital with another stomach bleed. He was very anaemic and had to have the first of many blood transfusions. Before he came out of hospital at the end of May, we learned that his application for Sutent had been turned down, as it was not considered to be cost effective.

Every expert of GIST in the world agrees that this drug should be given routinely when a patient becomes resistant to Glivec. This happened in every developed country in the world with the exception in 2007, of the UK. Fortunately most PCTs who had been approached for this drug had followed the advice of the health experts and allowed access to this drug often without the need for an individual case panel. At the time of Russ’s appeal, there had been only nine such applications in England and Wales and seven had been successful. Only Russ and a gentleman in Bromley had been denied this drug.

My immediate decision was that since Russ had to have Sutent we would pay for it ourselves but in the meantime we would appeal against the decision of the PCT.  We rallied friends and family and begged them to write letters directly to the PCT asking them to reconsider their decision. We contacted the local and national press and radio and television stations. Our local newspapers were superb and published something about Russ and our appeal every week. In spite of receiving over 100 letters about Russ including three from Members of Parliament, we heard in late June that our appeal had been unsuccessful. Russ started Sutent at the beginning of July; the first cycle was paid for by the drug company, Pfizer, on compassionate grounds. I wrote again to the PCT and said we wished to appeal further and then heard nothing for several weeks. When I rang them in August, I was told all the relevant personnel were on annual leave.

Through one of the local papers, we made contact with another couple in Rugby who were also trying to get the PCT to fund Sutent, this time for renal cancer. They too had met with a brickwall response and we met to try and plan our next move.

It was then that something amazing happened. One of our local papers sent me articles about Kate Spall who had campaigned on behalf of her mother, who also needed Sutent, in this case for renal cancer, and who had forced her local PCT to change their minds.  I  contacted Kate, who, although she had just lost her mother, agreed to help us. Kate immediately gave us hope. She said that she had fought her mother’s PCT and had successfully persuaded them to change their mind and she gave us the confidence that we could do the same.

Kate immediately set to work and with her experience of how the systems work came up with a date for us in early September, when the PCT had their next meeting, which was open to the public. We had meantime funded two cycles of Sutent ourselves and now there was another threat in that the government was saying that people who funded drugs themselves could no longer have free access to the services of the National Health System. The whole process was putting severe stress on Russ who felt abandoned by the health system which we had trusted to support and help him. He felt it was hopeless to carry on fighting and did not want to continue to pay for the drug which, if it worked, he feared would deplete us of all of our money.

We prepared our statement and Clare, the wife of the Rugby man affected by renal cancer, and I went to the meeting to battle for our husbands’ lives. At the appropriate time, in the slot for questions from the public, I stood up with Clare by my side and, to a stunned silence, read out the statement. The last paragraph was as follows:

‘We want our husbands to have the same treatment that you would expect your loved ones to have. You had all the information to make the right decisions in the right way – instead you chose the path of obstruction, cowardice and legalised killing. Shame on you all.  Your patient led, patient centred NHS is a sham and we are prepared to shout from every roof top and name and shame the so called public servants who have acted with an absolute disregard for very people they should be serving. The people of Warwickshire deserve better and should be aware of the way you have written off the lives of two men. I would request that the Chief Executive and Chair of the Board telephone our husbands tomorrow morning and tell them yourselves what you decide. We always believed the role of the NHS was to save lives – how wrong we were. ‘

The local press, who had also attended the meeting at our request, stood up and photographed us as we spoke.  The PCT were in the position of having to listen to us, because if they had tried to quieten and remove us, it would have excited even more press attention.  The next day we did have a telephone call and a week later I was invited to a meeting of the board executives and was told that Sutent would be funded for Russ as long as it was working. The other gentleman was given the same decision two weeks later. He is still alive nearly three years later.

Sadly for Russ, within days we found that  Sutent was not working and he was too ill to take another drug, Nilotinib,  that was available on compassionate grounds by the drug company but only for patients who had failed Gleevec and Sutent. Had he been able to take Sutent as soon as he became resistant to Gleevec back in April, the outcomes may have been different.  He died in October 2007.

Without Kate’s help, I do not think we would have persuaded the PCT to change their minds. The bureaucracy is so complex and the documents are written in such complicated language that it is really hard to fight against them. With Kate’s help, I know I did the best I could for my husband. My only regret is that we had to face the stress and anxiety involved in fighting for justice at a time when all we needed was calm and peace.

NICE have now agreed that Sutent should be funded for GIST patients who have become resistant to Gleevec.

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