To ask if you or a loved one have been refused a lifesaving medication on the NHS and how you have come to terms with

[CurdinHenry]

all the outrageous fucking public expenditure that spouts onwards while you or one of your favourite people on this planet have been told that, while the means exists to keep them alive well, they are simply going to have to die instead.

I don't think I will ever get over it. I feel on the cusp of some uncontrollable fury.

I'm so sorry 😞

Thanks I appreciate this (it is a more thoughtful response than many of the emotionless letdowns in my real life, in fact) but I also feel sure there are plenty in the same boat and I would like it if we could do something about it.

Sorry you are having to deal with this heartbreak. It depends on what the drug is and what for. Some of the cancer life extending drugs cost hundreds of thousands but only extend life by a few weeks. Others like you say are life-changing but refused because the price set by the pharmaceutical companies is so high. It must be so hard to deal with as a family

And you’re right, money is spent on many other things that I’d swap for more drugs and more NHS to be honest about

My dad could have had proton beam therapy for his cancer but it wasn't an option, privately it was £12k a round and they wanted him to do at least 10 rounds.

He passed a few years ago now

It is shit. But then had we been in the US or somewhere without nationalised health care he likely wouldn't have lived the 5 years after diagnosis that he did, they did give it a bloody good shot with chemo and the rest and it never cost us a penny

It has not happened to me thankfully. In fact I received what became gold standard treatment at a time when it was being trialed in my NHS region but not elsewhere and someone I knew had a relative with the same condition as me who died. I felt guilty as the person had sort of been basing her idea of how things would pan out for her relative on me- and then they died. I obviously don’t know it was the lack of the medication that I had… but it sucked.
However working for the NHS is see so much waste in many areas but equally I also know there isn’t an endless supply of money and lines have to be drawn somewhere. Yes people as individuals are always worth saving but sadly as a population there cannot be money for everyone and everything.

In saying that though I do believe a national campaign needs to be had to help discuss all the unnecessary treatment of the elderly for things that they could actually choose to not treat and allow themselves to die as there are so many older adults living no lives at all for years and years being kept alive without question and costing a lot of money all round and not being given the choice to opt out.

Thanks for explaining what I already know. You could stop funding a lot of awful and disgusting human beings and purposes and fund those life extending (in some cases life saving) treatments instead.

It’s shit. I’d be fucking furious too.

That's awful. I'm so sorry. There's something additionally torturous about being able to put a price on it I think (even though I know that's an artificial impression). Like if I lived in total poverty could I use my salary to pay for it. If I'd taken a different career path and been more confident and gone into the City could I pay for it.

It's not really the answer, all life is finite I know, but when some shitty grant for some shitty nonsense could have paid for twenty lives in the same position it makes me feel nauseous. And we all pretend to think life is sacred.

I am maybe angriest at how short pretty much everyone I know has been about it though. I know that's a separate issue. Shit people when someone is seriously unwell. Perky fucking moronic nonsense. Oh well maybe go on a NICE HOLIDAY like the seriously ill are famously able to do.

That's so sad to hear OP. That not only have you had this avoidable loss, but also that people around you haven't been able to respond in a helpful way.

Just awful, enraging.

It's really devastating. The NHS does use a methodology called TALY to consider the cost per expected years of life. They have to use something. They would not be able to afford to find all expensive treatments that have only a limited chance to make a significant difference. There is also the door for exceptional circumstances to be considered and funded.

It's heartbreaking but unless the process for consideration in your loved one case is flawed, sadly they just didn't meet the criteria.

Yes obviously I know that. But I also know how much money is spent in the NHS and government more widely on total total bullshit. How many people would be alive in five years time who will instead be dead because of cost centres that achieve less than nothing.

It's about proportionate comparison. Millions ca billions. The wasted money is nowhere near the cost of expensive treatments.

Also, if treatment was made available for anyone when there is only a very small chance of cure, or the extension of life of a few months, the pharmaceutical companies would immediately up their price.

It's all very sad but I fortunately, even money can't save people whose fate has been sealed. It couldn't save Job.

What drug is it? Could you pay for it privately?

I’m so sorry.