To worry that crowd funding for cancer treatments may not be a good thing?

[Bishybarnybee]

I have an open mind and am absolutely prepared to be told I'm wrong. I completely understand that if your child has cancer, you will want to go to any lengths to help them. My heart goes out to anyone in that position and I don't blame them for clutching at whatever straws hold out a bit of hope.

But I wonder if it is healthy or desirable to try to raise large sums of money to fund treatment that only works for a few, or only extends life by a few months. I have some experience of a degenerative illness in the family, and we felt strongly that it was better to let them go rather than prolong their life knowing they were going to die and any treatment was delaying the inevitable and prolonging their suffering. However, it was an older person, and I don't know how I'd feel if it was my child.

Genuinely trying to work out what I think about this.

YABU: any family would do whatever they could to prolong their child's life.

YANBU: If the NHS has done all it can, it might not be a good thing to focus your efforts on fundraising for treatment that can only delay the inevitable.

Yabu.
There is this happening locally to me and as a parent I've donated as I'd do exactly the same in their shoes

As you say, you haven’t had a child with cancer. As someone who has, every single fucking second counts.

YABU.
Sometimes children can benefit from treatments offered around the world that aren’t currently available on the NHS. They deserve every chance.

I get the parents wanting to do everything they possibly can but looking at it objectively it's more often than not going to be a huge waste of money.

My friend is being kept alive by immunotherapy that she gets in Germany at great cost

The NHS could only offer palliative care. She has cheated death for over 3 years now

There is excellent Cancer treatment out there for some cancers, at a cost.

You won’t get this on the NHS as too expensive

Is it always just for a short extension to their life though? Sometimes the NHS has done all it can within its budgetary limits. That doesn’t mean there isn’t a treatment out there that would possibly be a permanent cure.
I’ve not looked at the crowdfunding campaigns in detail though.

How come YOU got to decide to let your relative die??surely it was their decision alone?

If there are treatments available that the NHS can't fund then I don't blame anyone for fundraising. It's not always experimental treatments, sometimes it is well established treatments that just aren't carried out on the NHS. Even within the UK there are treatments available in some areas that aren't available in others.

And saying that they have no guarantee of working means little because loads of treatments for loads of illnesses, work for some people but not others and you'd never know until you try it.

YABU. What a horrible thread. Of course if you can raise money for a treatment to extend life and give chance for new medications to be developed then you do it.

How come YOU got to decide to let your relative die??surely it was their decision alone?

They had a living will. There came a point where they were past being able to consent and the doctors had to decide whether to fit a PEG. If we'd pressed for it they would have done it but after a very hard family discussion we felt it was not in the spirit of their living will as they had said they would not want to be kept alive for the sake of it.

I found out later that a colleague, whose husband had a PEG fitted in the last stages of cancer, felt afterwards she wished he hadn't as it was so hard for them both and just prolonged the inevitable.

But not a child, so very different in many ways.

Cancer treatment for children is fucking brutal. Kids are put through lifesaving treatment after lifesaving treatment after lifesaving treatment. It's a physical and psychological trauma.

It is very rare for palliative care to be suggested until every avenue is completely exhausted. But after everything that child has been through how on earth can you judge a parent who isn't able to accept that?

It is the place offering treatment that has the responsibility to be completely honest with the parents about likelihood of success.

There is no comparison to an older adult with a degenerative condition.

If the fundraising is for an individual and not through a charity they have the option of not spending the money on treatment if and when it becomes clear that it won't work. Would you begrudge them having the money to take their dying child on holidays or trips, buy toys or make their home comfortable enough that they can choose to stay there rather than hospital or hospice?

It's a few years now since my son died and he had a different disease, not cancer. I feel acute shame when I think of the money that friends and family raised for us. No one really wants to feel like a charity case and I just hope that everyone who gave did so in good faith and not reluctantly.

I am also hugely grateful for that money, it allowed me and DH to be off work, spending 24/7 with our son knowing that there were no treatment options that could save his life.

I would say either donate money, trusting that the parents know what is best for their child and understanding that the needs of a dying child aren't within in your experience or don't give if you are uncomfortable. You could always choose to donate to a cancer research charity or if you know the family well to fill their freezer full of quick meals instead.

Just don't forget that if you find this dilemma difficult, it is nothing compared to the many, daily decisions that parents of a seriously unwell child will be making and the last thing they need is judgement.

If it's actual bona fide treatment that the NHS just can't afford, I don't object. But there are some charlatans out there who promise miracles to desperate parents and rake in money as a result, and I don't want to fund them, so overall it depends on circumstances.

Some of these treatments are run by quacks which is very concerning.

Cancer survival rates in the U.K. are among the lowest in the developed world.

If the NHS has done all it can

Just because the NHS has done all the NHS offers, doesn’t mean that all that can be done has been done. The NHS offers a very limited range of cancer treatments, and better/more successful treatments are available in other countries like Germany and Australia.

This will not change all the time we have free at point of use healthcare.

I don't think it's unreasonable to ask the question.

There's also a wide variety of 'treatments' - some very legitimate and some rather less so and it's hard for people to know which of these a case falls into. An acquaintance was fundraising to go to the USA to go to a centre in the US where they claim to treat cancer with a raw food diet and I don't think sending critically ill children thousands if miles to e.g. Mexico for unproven, expensive and controversial treatment is in anyone's best interests. Proton beam therapy in Germany is probably a far better cause to support but as I said, how do you know if you're supporting getting treatment not available in the UK for e.g. cost reasons versus clinics who are taking advantage of vulnerable desperate people.

I think the "loving parents pursue any treatment possible" rhetoric is quite damaging.