Foreign cancer clinics and children - distressing content

[Phacelia]

I hope it is not in bad taste posting this. I don't want to cause distress, but I'm so angry having read www.dailymail.co.uk/health/article-2162698/We-want-die-home-Parents-flew-cancer-stricken-daughter-7-Mexico-ditch-treatment-discover-need-140-000-home.html this and I need to write this somewhere.

Over the last few years I have, through a children's charity I support, seen several families take their terminally ill children to foreign clinics (like the Burzynski clinic) in a last ditch attempt to cure their cancer. They usually have to raise several hundred thousand pounds for the treatment and the children end up dying anyway. The whole thing is so tragic. I can totally understand the parent's desperation in trying anything that might help.

This latest article is another child, she is also supported by this children's charity so I have been reading about her for a few days before this article. It's devastating, she is going to die, and the parents, understandably, have looked elsewhere for an answer and taken their daughter to Mexico. She is now stuck out there, about to die and they are pleading for funds to get her home. (£140,000)

My blood is boiling and I feel so desperately sad for this little girl and her family. What the article doesn't say is that (as far as I've read on the charities facebook page) this little girl was taken to Mexico already at the stage where she wasn't communicating and was sleeping most of the time. Which as far as I'm aware means she was very close to the end. In Mexico they pumped tpn into her and gave her some treatment and she was in terrible pain and now she's of course taken a turn for the worse. I can't imagine the distress of the parents that they might not get her home in time. But there are also of course thoughts of 'what were you thinking?' even though I know that's probably very unreasonable of me because of course she's their daughter and I can't even imagine knowing you will lose your child. Of course they're going to do everything they can. (I hope that doesn't offend anyone. I have massive sympathy for them, but more for the child who was clearly near to death and who was put on a long flight at that stage of her illness. I can't even imagine how much she must have suffered as a result of that)

Having seen case after case of this, I just feel so angry at these clinics. They are the ones to blame. It is beyond immoral. The sums having to be raised, well if they were being poured into UK cancer research then that would at least get us somewhere in terms of better treatment outcomes. I know there are of course lots of foreign hospitals where there are legitimate treatments being offered which might help, but how does a vulnerable, distressed parent tell which is legitimate and which isn't?

There was a thread on here a few weeks ago with a mumsnetter trying to raise awareness of a friend's struggle. They wanted to send their child to Mexico to as a last hope. It's beyond vile what those people do. Their treatments DO NOT WORK and they get fat on the desperation of parents. God knows if it was my child I would do anything. Any parent would. I know that but I won't give money to this sort of enterprise. I feel horrible but I won't fund it.

I won't either. I see so many campaigns of this sort. They always need 200k plus and whilst I feel devastated for the family I just can't give money knowing what I know. It's a horribly sad situation.

Oh no - I posted before I clicked on the link and that is the child the thread was about. I'm so sorry they're in that awful situation

If it's just that she needs a private jet to get her home you wonder if there would be a celebrity somewhere who would donate theirs for that journey rather than them trying to raise that much money in a short time.

Hopefully the press coverage will achieve that.

I hope so. I can't even imagine what they are going through.

Jimmy Carr seems to have a spare bob or two - and a pressing need for some good PR.

It's desperately sad that clinics prey on vulnerable parents and children. And it's not just Mexico, either. I knew a lovely chap who went to Germany for super-duper exotic 'life-saving' treatment for cancer. And died there. Sadly people fall for the idea that the NHS is a bunch of big old meanies and are ripe for exploitation by snake oil salesmen who pretend they have something better, that just happens to cost thousands of pounds. I remember a decade ago a clinic in Germany preying on MS patients, claiming to offer 'stem cell therapy'. At huge expense, but backed up by 'testimonials' by the poor sods who had been fleeced. (Obviously there are snake oil salesmen preying on the dying in lots of other countries too, including the US - I just happen to know of two German examples.)

I was really concerned when the original thread was posted. I can understand the desperation of the family, but every time there's an appeal where a vulnerable family is trying to raise hundreds of thousands of pounds to send there sick child to a snake oil salesman halfway across the planet, it angers me.

They want to buy hope and are being sold discomfort and pain and pointless false treatment. Instead of making the children's last days as comfortable as possible, they undergo godawful stuff.

I don't blame the parents. But I blame the likes of Burzynski, or that mexican clinic, and I blame the media outlets which give airspace and column inches to these appeals. They ought to know better by now, it's old news. By supporting the raising of money, they support not only the woo mongers, but they're also complicit in facilitating unneccessary suffering. But who cares when it sells papers?

It makes me really cross. The poor little girl, the poor family.

I'd also like to add - will the girl gain much from being shoved onto another airplane and subjected to travel or wouldn't it be better to make her as comfortable as is possible whilst on life support already?

Bringing her home to die is more in the parents' interest than in the child's from what I can see. That may sound cruel, but I think she's been subjected to enough.

I agree with widowman - the best possible thing is to allow this child to die where she is. A traumatic long, distance journey is the last thing she needs.

I understand the parent's desperation but doesn't logic dictate that a developing country like Mexico is seriously unlikely to have superior medical methods/techniques to the western medicine?

Maybe all logic goes out of the window. I don't know. Very sad.

I think that the sensible choices you make when NOT in those shoes are a world away from the desperation you must feel when in that situation.
It must be very hard for the medical teams too - to see these patients fly off and then have to pick up the pieces when they come home.

This is what some of us mean when we say that belief in "woo" is not harmless.

And the Daily Mail piece linked to on the other threads says that this poor child is "one of the few" who didn't get better after this treatment.

Outrageous.

Seeker, I think the parents decided to send her based on the difference that they saw it made on another child that they knew.

But it didn't make q difference. The child might have improved, but not because of this treatment.

And the Daily Mail article says explicitly that most people et better on this treatment- which is not true.

As far as can be judged from the coverage the child's condition was such that no reputable institution should ever have considered accepting her as a patient unless for end of life care. Afaik there is no peer reviewed evidence for the treatment she received and no 'mainstream' doctor would refer for it. Sometimes you will see 'remarkable' recovery after both conventional and alternative treatments - but without validated research there is no way to know if the treatment works - and why it worked in that case and not others or whether that persons disease would have gone in to remission anyway. There's also no way of knowing what improval in survival that treatment may or may not have. Cancer is a disease which sees periods of remission. Sometimes they last a long time before the disease returns and moves fast. Sometimes remission persists and the person is cured. The 'hope' clinics in Mexico etc can tell you none of this information because nothing they offer is proved. The only things that's certain is the cost.