BBC You and Yours - cancer wait times

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I've just been listening to Radio 4's You and Yours about wait times for cancer and how only 3 NHS Trusts are meeting the target of starting treatment within 62 days of diagnosis. My husband waited 87 days (a conservative figure as he had to wait for tests for two months) by which time the cancer had spread and was incurable. The first chemo was stopped. He waited a further 42 days until a new round of chemo, but he declined, dying of complications of oral thrush. HIs Trust came 110 out of 121 Trusts, so he didn't really stand a chance. PALS have avoided answering my questions. 

I don't think anyone can know, unless they've experienced it themselves, how these delays and deaths impact on those of us left behind. Knowing that deaths were avoidable, or at least, postponable, adds to the pain and prevents 'moving on'. The sense of guilt is overwhelming: did I fight hard enough? Phone calls to the specialist nurses who told us that the delays wouldn't have an effect on tumour growth proving to be wrong. It really doesn't do to tell us to 'be assertive'. We can't fight against a broken system.

I'm not sure why i'm posting. The programme told me what I already know and leaves me feeling flat and defeated. 

  • I do often wonder if things would have been different if my love had not waited 2 months for scan results, 1 more months for radiotherapy and another 6 weeks or so for surgery. It was a rare but aggressive sarcoma. By the time they operated it had grown from walnut to large baked potato sized. They thought they got it all but within another 6 months it had spread and was incurable. He lasted a year from then.

    I can't change anything but you can't help but wonder. Our trust came in at 89 on the list.

    By comparison, my step son in law has had colonoscopy, scan and operation this week, all in less than a month, so there is some things working in the system.

  • Absolutely  agree it's  a lottery  also I have learnt  we were not at a Cancer hospital  just general  but I understand  we were a emergency  going in first time but definitely  depends where you live sorry if I am wrong but the Marsden in London  sounds the best place to be no chance for us

  • I still maintain had Jay had some precautionary chemo or radiotherapy after his tumour being removed it may have made a bit of difference but I was told flatly `no` and as far as they were concerned they got it all and if chemo or radiotherapy is not necessary they don't do it but there 5 months down the line it was back so obviously cells were missed and left to multiply again but at the end of the day they are the experts so you're not going to argue with them as they are the professionals and know what they are on about but maybe in this case not so. 

    Vicky xx

  • I feel so sad that many of us have had of never-ending mistakes. I can't decide whether it's a consequence of trying to cure the incurable or just plain muddle and confusion. Perhaps we should be supported to accept that our loved ones are dying rather than subjected to interventions that might not succeed. I don't know. 

  • Its so difficult for us to know. Tony did have the 25 sessions of radiotherapy during which time the tumour grew more, so in his case, maybe going straight for surgery would have been better. But they make their decision on best expert advice and you hope its the right one. We will never know will we, but it doesn't stop us wondering what if.

  • I'm sure that decisions about treatment are made properly: they are usually made after multidisciplinary team discussions. It's what comes before and after: who makes the decision about when a patient gets to be treated? If the target times aren't met, who is actually accountable? When mistakes are made, or information given that proves to be wrong, why aren't these acknowledged? 

  • I find myself thinking age had something to do with it. Had he been of working age, I feel he may have got treated sooner. Can't prove that of course, but if you have to prioritise treatment, would you choose a working adult, possibly the main income earner, maybe with children at home? It shouldn't be down to choosing but, well, it does cross my mind in darker days.

  • Maybe, “Carry On Up the NHS”. That way you can give them the two fingers. Joy

  • I expect, because they don’t want to be sued.