AIBU to not like the petition about childhood cancer.

[Lonelymummyof1]

so child hood cancer is so devastating and no child of family should ever have to go through it.
I am no way saying that childhood cancer is not important.
Recentlty there has been a petition that has gone viral so I know I will be the worse human alive on here for saying it but the petition is to

" make childhood cancer the foremost inportance of the NHS "

Now I have a daughter who has a life limting / threatning disease so maybe I am sensitive.

But I believe there should not be a foremost importance and that childhood diseases should all be just as important as one another.

Each child battling a life threatning condition should not be any less important to the NHS depending on disease.
Research should surely be fair and treatment to ?

Expat - xpost. I'm very sorry for your loss and for the way you were treated by people around you when your child was in hospital. That's very wrong.

Comparing conditions is wrong too though. Saying that childhood conditions should be prioritised over each other is wrong.

'Some types of childhood cancer have a 100 per cent survival rate.'

Which, please, besides possibly retinoblastoma? I'd genuinely like to know, because aside from that one, I've not heard such stats. Even childhood ALL is 90% (rates are lower for infant, adolescent ALL or ALL in children with Down's Syndrome) and I have two friends whose sons died from testicular cancer in adolescence.

Those cancers in children are usually not progressive, they are aggressive, hence, they swallow up a lot of resources. A great deal of resources, even those private rooms and those units built with all private rooms. And again, they tend to cause a lot of knock on effects that require acute care. This may be why they look at researching more into them. I don't know. But I see here a lot of bitterness and race to the bottom. Well, I'm already there. My daughter is 6 feet under.

sashh Sat 18-Mar-17 07:14:28

There was one recently demanding the NHS offer smear tests to younger women because someone had died from cervical cancer at a young age - totally ignoring the reasoning for the current system and also ignoring the fact many doctors do invite younger women for smear tests.

There are none that I know of with 100% survival rates. I've known children die from cancers with very good cure rates, because the treatment or common infection has killed them.

Yes the figures that I saw were 100% survival for eye cancer, 96% for Hogkins Lymphoma and 92% for ALL.

I don't know what this has got to do with making childhood cancers "the foremost importance of the NHS though."

What does that actually mean anyway?

Piglet,
I totally understand where you are coming from when you say it is offensive for people to say cancer is sexy

But for clinicians and researchers it is sexy area of work. It gets a lot of attention and heaps of money for research. It is most certainly not fair on other people who have illness that get less funding for research.

Retinoblastoma has a 95% survival rate.

T1mum - my eldest daughter was diagnosed with type 1 diabetes last year so yes, I get it.
But i still prefer her having that then one of the leukaemias or a brain tumour.

I can't really articulate clearly how I am feeling about this.

My son had leukaemia and we are incredibly lucky to still have him here with us.

As a non-oncology parent, you may well think that survival rates of 92% are great and that it's not fair that cancer is so sexy. I know T1D is terrifying - I have personal experience of it myself - but you can't seriously in a rational moment think that children with cancer have a better time? Do you have any idea how utterly terrifying it is to be told what great news it is that the survival rate is a whopping 92%? Off the top of my head, I can think of 20 children I know who have/had ALL. What that statistic means for me is that I am forever wondering if my child will be one of the two who doesn't survive.

To the OP, if you don't like a petition, don't sign it or start your own.

Zeezeek. Yes, but what would you say if someone said she had to go onto mixed insulin because the NHS was prioritising a different condition? Hopefully that's not going to happen because NICE weighs up all the treatment options and says that you should expect to use a basal bolus regime. Because that's how funding works, not by someone running an emotive petition which is what the OP is about.

By the way, I don't think cancer is "sexy" - I think that's a horrible unfeeling expression. I don't think funding for childhood cancer should be reduced. But coming from the perspective of a parent to a child with an incredibly unfairly stigmatised, serious condition that involves organ failure and round the clock monitoring (completely misunderstood in public perception), I'm really against the idea that NHS priorities should be decided by petition. Which is what the OP is about.

YANBU
I hate all online petitions

no cause changes my view

We found quite a lot of support upon the back of a diabetes diagnosis. We had automatic access to support and psychology services which we'd previously not had.

My child has another well known life limiting illness. We've known several children that have died. Those that dont die under the age of 18 often die in early adulthood.

My child sometimes gets aggrieved because we see a lot of support and charities organising events for cancer - especially through school. We've only seen ones I've directly been involved in for my childs condition.

However as I remind my child, its not a race to death. I've met many parents of ill children in my years on hospital wards and my heart breaks for every single one of them, regardless of their childs diagnosis. Knowing your child is suffering and may lose their life is a horrible, loss of your stomach type feeling.

I wish there was more funding for both cancer treatments in peads and other life limiting conditions. I'd rather not pit two ill children against each other for funding, but would hope that resources would be available for both children.

FWIW I do give to child cancer charities, specifically ones that ensure the money will benefit children (so I usually give CRUK a miss). Doing this doesnt prevent me from helping fundraise for my childs condition either. If everyone who had money to, wad able to donate a bit to children cancers and other medical conditions then isnt that a positive thing?

The way I see it is that my child has a long term chronic condition (which, incidentally her step-brother also has) and we manage it. Maybe we have been lucky, I don't know. But if she had cancer then I would be more worried about her survival.

Maybe my thinking is tainted by the fact that I've had cancer and seen a number of people die from it, whilst I know lots of diabetics who live fairly normal lives. I don't know.

However I do strongly agree that we should always prioritise one condition over another. My point all along has been that GPs struggle with diagnosing cancer in children and young people and that we should help to increase awareness to prevent diagnostic delays that can lead to increased death rates.

Compared to some cancers - for example the one that I had many years ago called osteosarcoma, diabetes is more quickly diagnosed.

T1mum3 - what would you say if your child was diagnosed with T1 and then told
Sorry go home and watch your child die because although we have insulin for
Adults we haven't trailed it in children and you can't have it(chemo drugs that happens) or have to wear protective clothing gloves and never come
Into contact with body fluids because the treatment you are giving them to
Cure them
Is actually a poison and highly toxic because no new kinder drugs in the last 40 years have been specifically developed for childhood cancers. As mothers we all fight to get the best for our children so
If you want to start or sign a
Petition do so . I wish with all my heart I had my 8 year old daughter with T1 with constant monitoring and with possible (not always organ failure when she was an
Adult but unfortunately she was in the cancer group that for some
Reason alien to me
That you think have more
Support ect and envious of and I nursed her until she died in my arms purely because we had no drugs to even try to cure her cancer as it had come back three times. So when you see the bald happy kid on the tv for CRUK and think they get millions
In research money please be aware that kids actually get LESS than 2p in every pound people donated when their heartstrings was pulled and that is then divided by over 200 childhood cancers.

If your children child is ill, seriously ill, you think all sorts. I. The three days from going to the go on a Friday to taking my son to hospital on the Tuesday I begged and prayed for it to be diabetes because I thought that was more curable than a brain tumour. Luckily my gp took my worries seriously, when I said I was taking him to A&E she rang and had the neuro team on standby. Had I left it his consultant said he would have been dead by the weekend. As it was he had 27 months of life after that trip to A&E. but it was 27 months of torture, hell, occasional moments of respite, paralysis, disability, pain, torture, love. If he had been under 8 the survival rate was 80%. He was 15. Almost unheard of. They talked about his case worldwide. His life and death will go towards all the research that may help another child in years to come. But he died. The treatment he was given has since been stopped for all future children because not enough of them survived it. It was horrific. We had no other choice. My child died. Horrifically. There was no sexy to it. There was no 'thing' that could have made it worthwhile. Except his statistics would go towards another child not having to endure his treatment.

It was horrific. On levels you cannot imagine. I'd like to think something could come out of his suffering. Perhaps another child not suffering so. His life ended. My life continues knowing that he suffered so. Horrific. No other word for it. For him. For me.

To put the comment about psychological support into context, significant numbers of people with T1d die each year due to lack of psychological support. Others die because they don't have access to a device which monitors their blood glucose and would cost the NHS around £3000 per person per year. Because of delayed ambulances. Because of poor education in self management. For others the effect of the lack of this care is a huge impact on quality of life and complications which start as children. Others die due to lack of gp education and missed diagnosis. Or inadequate hospital care. None if these things have a very high cost per individual to the NHS- it's the amputations and the renal care which cost money. They have of course already had one organ fail - that causes T1d.

It's all money. I am so sorry for your pain as I am for the parents whose children die from any other condition and the fact that it is limits on resources that ultimately mean that cures aren't there for everyone.

Please could someone link to a page for a charity which does do good research into children's cancers?

minmooch expat think of you both a lot, the horror never goes, not even the best death is a good death when its a child. to you both and everone else, strength and endurance.

MuddlingMackem

Yes that was the one.

It was tragic and she should have been given a smear, however the smear may have come back 'normal' because in younger women there is a high percentage of false negatives. Or may have come back positive due tot he high number of false positives.

Or if all younger women had routine smears her result might have come back in 6 months due to the million more smear tests done because all young women now have them.

The woman was badly let down by one particular Dr, not by the cervical screening - screening by definition that is designed to pick up pre cancerous cells in women with no symptoms.

But why then is it only getting 4%? I would have thought it was easier to fundraise for something that affects children.

Think about HOW you would do the research on children's cancer?

There are people on here who know the realities of having a child with cancer. One person described it as torture, and it is.

Parents put their child through the treatment in the hope of a cure, could you really ask them to try an experimental treatment for which there is no evidence?

Just because only 4% goes into researching childhood cancer directly doesn't mean 96% of research doesn't go in to childhood cancers.

A new cancer treatment will always be trialed in adults and if it looks as though it has potential then it may be offered to children. It is unethical to enroll children in clinical trials.

You cannot distribute medical research evenly, it doesn't work that way. If something has potential to cure a disease researchers don't stop and say, well this might work for diabetes but we are focusing on cancer this week.

Also a medicine for one condition might have uses in another condition.

Viagra wasn't developed for impotence, it was being trialed to treat angina and hypertension, erections were a side effect.

I am so with this thread and the inaccuracies being stated here.

So let's get the statistics correct first.
About 11 children are diagnosed with cancer every day in UK
Childhood cancer is the biggest killer disease in the UK of children and young people
500 children die every year in the UK ... twice as much as death from meningitis
Childhood cancer receives less than 1% of funding from Cancer Research UK ( that's less than a penny in every £) this is why they have set up the Kids & Teens fund to pigeonhole the money
NO cancer has a 100% cure rate
NONE
There have been 3 drugs developed for children with cancer... ever; that's 3 for over 300 types!
Children can be placed on trial ... of course they can. I know of 100s who've been on trial including my own child.

Cancer fundraising is not sexy
There is nothing sexy about cancer

Fundraising is not just about treatment
Children suffer for years post treatment due to side effects
Some children get diabetes as a side effect of cancer treatment/disease

If you don't like the petition
Don't sign it

That's it
I'm off to support the Marsden March

www.bechildcanceraware.org/child-cancer-info/child-cancer-facts/

Here's a link confirming the statistic that 1 in 330 children will develop cancer before the age of 20.

1in 500 before the age of 14. In in 330 before the age of 20

www.childrenwithcancer.org.uk/facts-and-figures

I've learnt a lot on this thread. The figures that I was looking at are [[http://www.childrenwithcancer.org.uk/facts-and-figures]]

What I have learnt that has really shocked me is the lack of paediatric trials of adult cancer drugs - I am right in saying that the law has changed so companies can now opt out of paediatric trials? Sorry if I have got this wrong. That's terrible. Is the of Cancer Research [[http://www.icr.ac.uk/about-us/policy-and-factsheets/early-stage-clinical-trials-of-cancer-drugs-for-children]] a good organisation to support to try to get this changed? Would a petition to put pressure on the drug companies be more use?

Also flagging Action Medical Research which funds research into conditions like Duchenne's Muscular Dystrophy as well as neuroblastoma. It also funds research into longer term conditions in childhood like sickle cell and MS.

Finally, this report from 2014 identifies priorities for reducing the UK's child mortality rate. It specific references the poor care of children with T1D, who are not getting the care processes that the NICE guidelines recommend. I'm sorry if I've been insensitive by raising a "lesser" condition, but as I've said repeatedly petitions that set one group of conditions against another are not helpful. www.rcpch.ac.uk/sites/default/files/page/Death%20in%20infants,%20children%20and%20young%20people%20in%20the%20UK.pdf

Funding does need to be addressed and priorities considered. If the NHS is spending a lot of money on dementia for people at the end of their life then perhaps this needs to be redirected to services for children who could otherwise go on to live a long and healthy life. I know this is controversial but I say it as the daughter of two people with Alzheimer's.