The Voice of Desperation – as if cancer is not bad enough!

I have been writing to  a wonderful lady – the partner of a cancer patient called Ian Bowers. Ian and his family have been forced to pay for their own treatment for Ian cancer – the drug Ian’s Dr wants to prescribe for him is SUTENT. But Derbyshire  Primary Care Trust  ( using the word CARE  and TRUST in their title seems outrageous  for this organisation)  will not pay for Ian’s treatment despite the fact ( scans to prove it ) the drug is working and is holding the cancer at bay, despite the fact that there is no alternative treatment, for Ian’s condition which is a very rare cancer, and despite the fact that Derbyshire  PCT is sitting on nearly  £2,000.000 – TWO MILLION, YES ………….TWO MILLION POUNDS……….. UNDERSPENT IN THEIR BANK ACCOUNT.

How can this happen in the year 2010 that a patients needs care and treatment – the money is there to pay for the treatment, the treatment is working but the highly paid administrators and NHS managers decide they know better than the Dr.s

This is a terrifying picture of what is happening to our wonderful NHS now the wrong people are in charge of making decisions about our cancer treatment.

I received this from Jane and with Janes permission, I would like to put it here  so that anyone coming to this site  will know what our fellow patients are going through. I find it almost unbearable to read.

Today was the NHS meeting that will decide whether Ian Bowers lives or dies. Of course no-one within the organisation had the decency or compassion to inform us of the outcome by phone. As it is also a bank holiday and the powers that be will doubtless have both Monday & Tuesday off we expect a letter will arrive at the end of next week. Ian has been vomiting for 2 days, which he has rationalised as “a bit of dodgy fish” but I think it is stress. The atmosphere crackles with tension. Our son has sensibly departed to his girlfriend’s house, perhaps sensing any slight misdemeanour on his part will cause WW3.

I consider myself a liberal pacifist but at this present moment I can understand what drives people to snap: to jump off a bridge or drive their car at 100 miles an hour into a wall; or lash out at someone who dares to cut in front and nonchalantly steals “my” parking space. If this was America I could empathise with the kids that take their parents’ guns and let loose in a shopping centre. The tension is unbearable.

This is what no-one in authority, or anyone who has never had to put their lives literally in non elected bureaucrats’ hands comprehends. Not only do we live with cancer and the very real threat of loss on a daily basis but we have also to cope with inequitable, unjust and infuriating systems that measure our lives in terms of algorithms and acronyms. QALY = quality adjusted life years – will this expensive drug give us value for money? Will the patient (an anonymous, faceless entity) live for more than a few months with the drug than without it and is a few months worth the investment. In many cases “no”. The patient regardless of age, current health and well being is not valued as an individual, a human being, but in terms of cost effectiveness. He/She will die anyway so why prolong the agony? Why give him the hope of a “cure” or the opportunity to have some normality, to take a holiday, to say goodbye, to make his/her peace with the world?

“We have to make difficult decisions” the bureaucrats state, I doubt “public health consultants” or “chief executives” ever lose sleep over the fact they have sentenced a human being to an early, agonising and untimely death because they have ensured that the money saved will provide several more meetings with buffets and drinks for their managers to compensate them for the “difficult decisions” they have to make.

Ian is watching inane TV, unsure how to cope with my impotent rage at the injustice of the situation we blamelessly find ourselves in. So I rage quietly in writing and pour another glass of wine. If I have a heart attack it won’t be the extraordinary “stress” these bureaucrats have caused us – it will be my lifestyle choices that are to blame. People say life is just a ride but sometimes I really just want to get off……

Posted under Cancer Drugs, Rose Woodward, Social Medicine, Uncategorized

5 Comments so far

  1. Helena Britsch May 29, 2010 3:17 pm

    You should write to Nick Clegg, he wouldn’t stand for this.

  2. jo May 29, 2010 5:15 pm

    Doesn’t surprise, nothing about the NHS surprises me any more. I’m sure they never loose sleep either.I don’t know what else to say. Its crap.

  3. Jane May 31, 2010 1:55 pm

    Its me the above refers to.
    Please can everyone write to someone. I am exhausted and have written to everyone in Parliament, House of Lords, journalists etc already. Thanks

  4. Filomena Richards May 31, 2010 6:59 pm

    Jane has done absolutley everything she can!
    It is heartbreaking to see both Jane & Ian going through this, I know there must be loads of other people in the same position but when it happens to one of your own it is devastating. I wonder how one of these people who sit in judgment would feel if it happened to one of their children, husband or or wife.

  5. Ron Bowers (Father) May 31, 2010 7:29 pm

    It is outrageous that, having proven the effectiveness of SUTENT for Ian’s condition and the on-going benefits that the 3rd appeal by the clinical experts (who really know) should be denied on the basis of cost. Where do these people think the money to keep Ian alive is going to come from? Jane & Ian with much effort and the support of family and friends raised over £20k for the first 6 treatments to provide this evidence.

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