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AIBU to not like the petition about childhood cancer.

(86 Posts)
Lonelymummyof1 Fri 17-Mar-17 23:40:02

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 ?

Ihavefriends Fri 17-Mar-17 23:46:46


But it's the nature of pressure groups, they pressure for their "thing". Cancer is relatively "sexy" (I hate that term in this context, but cannot think of a better one), add in children, and heartstrings are pulled. But there are many other diseases just as awful, that deserve funding.

But "please adequately fund all sectors of the health service" has been falling on deaf ears, so I don't judge the pressure groups.

I'm sorry about your daughter's illness.

Velvetbee Sat 18-Mar-17 00:01:37

No I don't agree with it, I find it incredibly offensive to rate diseases in this way and I have a son with a brain tumour.

HappyPaddyDay Sat 18-Mar-17 04:29:48

Cancer is the biggest killer and therefore should have a lot of money spent on it.

Different groups fight for different causes.

Diseases are rated or ranked though. Frequency, cost to fight it, survival rates, success of treatment etc.

Research should surely be fair and treatment too?

Define fair. There are finite resources so decisions need to be made. If one child has a life threatening disease and one in 1,000,000,000 have it. Another has a life threatening disease which 1,000,000 has, should research and purchase of other equipment get the same amounts?

Skooba Sat 18-Mar-17 05:47:01

Give lots of money to cancer research charities if that is your wish? The NHS doesn't come into it - some people are thick. But we need to discuss elderly health as that is the big bottomless pit, we will all be old some day , how much care have you saved for?

FairytalesAreBullshit Sat 18-Mar-17 05:52:11

I find it hard with any petition about making any one illness a priority, as suffering is subjective, like PP have said, there can be life limiting illnesses for DC in all forms that are massively underfunded and under researched.

Maybe I'm wrong, but any life limiting condition in a child is awful.

minmooch Sat 18-Mar-17 06:19:42

Unfortunately cancer is THE biggest killer of children. And particularly brain tumours. My child died from his brain tumour.

There should be a lot more money going towards this to try and help future children.

There should be a lot more money going towards research of ALL childhood disease, rare or not.

No child is less deserving. No disease less deserving of research.

None of it is fair. Especially on the child. That we should have to say this disease is more deserving than the next. Emotion doesn't come in to it for those who decide where money is spent. Presumably they want to find a cure for all diseases, the biggest killer first.

Unfortunately all the research done so far didn't help my child. Probably won't help many children for a few years yet. But research needs to be done to try and help.

Whoever said cancer and children = Sexy advertising wouldn't say it if your child had lived through/died from cancer. I know that was not what you were implying but these adverts do not show the true horror of childhood cancer (or any childhood disease). They show smooth headed children (infantilising them perhaps) smiling as they accept a gift or an experience. The true horror of the pain from treatment, vomiting hourly, ulcers in the mouth and throughout their tubes making even swallowing painful. Uti after uti, the pain of not being able to wee, the pain on weeing. The pain of constipation. Your skin falling off. Hair falling out. The tremors, the fits, double vision. Learning to sit, walk, talk at age 16. Having to use a wheelchair when previously you could walk. Losing all your body weight because you physically cannot eat. Losing the ability to walk, sit, eat aged 18. Watching your child as a living skeleton. Organs shutting down one after the other. Paralysis taking over. Watching the disease take them bit by bit. The glamorisation of cancer kids makes me want to vomit.

If advertisers/charities showed the true horror of all childhood diseases then probably more money would be raised for all of them. But us as parents are so desperate to protect our vulnerable children it's impossible to say yes use the image of my child suffering horrifically.

I'm so sorry your child is ill. It is a terrible terrible thing to witness your child going through any illness. I'm so sorry that there is not enough money to adequately research all childhood diseases.

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

Unfortunately cancer is THE biggest killer of children. And particularly brain tumours. My child died from his brain tumour.

But the reason it is the biggest killer is the research that has gone in to other diseases. Polio used to be a big killer and also a big crippler of children. Measles used to be another killer.

Cancer isn't one thing, there are hundreds of different ones and research is often aimed at looking at something that has potential to work.

I do get annoyed at some of these petitions. Sadly every few years there is one to bad window blind cords because tragically a child has been 'hung' playing with one.

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.

minmooch Sat 18-Mar-17 07:47:57

Sash I hope that in turn childhood cancer can be erradicated. There are at least 200 different types of brain tumour alone. The situation is desperate.

It goes without saying that I hope all childhood diseases are cured.

FairytalesAreBullshit Sat 18-Mar-17 13:04:03

Cancer is truly awful, money does go into researching it, I know of money raised for Head Smart, which is linked to brain tumours. I know therapy they believed worked in the past has changed.

Anyone with a child with a terminal illness has a horrific time. There are diseases out there with little funding and not really understood. One worry for me is, with the Brexit malarkey, scientific EU grants have the potential to be affected. What impact will this have on research into terminal illnesses.

I really feel for anyone with a child affected by a life limiting illness, it's the cruelest, one of at least, things ever.

In an ideal world there'd be money to research everything.

PigletWasPoohsFriend Sat 18-Mar-17 13:07:49

Cancer is relatively "sexy"

As someone who has cancer now and has had it before also, it is anything but 'sexy' and that term in this context is quite offensive. There are many words that could have been used but that one.

Satishouse Sat 18-Mar-17 13:19:13

Minmooch, my heart hurts for you. I am so sorry x

ImFuckingSpartacus Sat 18-Mar-17 13:23:28

I don't see the point of the petition or what its supposed to achieve. No disease is at the forefront of the NHS, the whole point of a universal health system is that everyone is covered and of equal importance.

A child with cancer should get all the treatment they need, a child with another diseas should too.

expatinscotland Sat 18-Mar-17 13:26:44

Thank you for putting it so well, minmooch. I can't even write what my daughter's last 2 months were like. She lived 7 months and 29 days following her diagnosis.

minmooch Sat 18-Mar-17 15:29:20

Expat big hugs lovely. Our children suffered so hideously. It still hits me out of nowhere how much my Will suffered.

It's beyond me - we can put men on the moon, robots on Mars and yet so many childhood diseases needing research, so many families that suffer whilst their children are ill. The financial implications of caring for a child that is seriously ill are horrendous. Services that you have to fight for at a time when you have no emotional reserves to fight.

My own experiences are of a child who fitted neither the paediatric nhs world nor the adult world. Aged just before his 16th birthday on diagnosis we managed to get him on the children's ward. Had he been forced to stay on the adult ward (where he was until I fought for him) I would have had to leave him there. 15. Brain tumour diagnosis. Alone on a ward. He was in hospital for 6 months full time before we were able to get him home. He was then 16. Too old to receive physiotherapy from the paediatric services. The adult physiotherapy services were for those over 19. A 3 year black hole. I fought, cried, bargained, threatened, screamed and cried for help for him - got it reluctantly in the end but I shouldn't have had to go to such lengths. Too many other devices, equipment I had to fight for to get for him. It makes me weep to think how hard I had to fight, how many other families have to fight for basic services.

There are so many facets to childhood illness that most people are unaware of.

Money needs to go into researching and curing these illnesses.

Money needs to go to help those families trying their hardest to give their children the best life and then the best death they can. In my son's case when it was his time he was too old for a children's hospice. The wonderful hospice we managed to get him to for the last 5 nights of his life had never had anyone so young. The carets there and us, his family, had to learn how to prepare a very young man for his own death.

I'm sorry op to have derailed your thread. It's not always that I am able to talk about these things but today I need to be able to write these words.

covenantofold Sat 18-Mar-17 16:03:36

Cancer in children is unspeakably cruel and the treatment is horrendous. You sign your child up for torture in the hope of somehow achieving a miracle.

I'd support it being number 1.

There are lines of thought which suggest that if we can cure childhood cancer, we can cure many more illnesses in turn.

lavenderandrose Sat 18-Mar-17 16:08:21

Sexy? hmm shock

Even as clumsy phrasing, that goes too far and I think an apology is in order.

CFSKate Sat 18-Mar-17 16:32:35

I think I have read on here that childhood cancer does not get a lot of research funding compared to other cancers (it may have been expat who said this?) which I was surprised by.

In the media recently I have seen a lot of talk about the need for more dementia funding, but I don't know how much funding it gets in the first place. I just googled and found this

DJBaggySmalls Sat 18-Mar-17 16:39:12

YANBU, cancer isnt one thing. Its had billions of dollars spent on finding a cure. If money were the problem cancer would be a thing of the past.
They'd do better to fund raise for Cancer Research rather than start a petition.

Ihavefriends Sat 18-Mar-17 18:20:13

"I think an apology is in order."

No. I don't think so.

expatinscotland Sat 18-Mar-17 19:03:00

'I think I have read on here that childhood cancer does not get a lot of research funding compared to other cancers (it may have been expat who said this?) which I was surprised by.'

That's true. It gets about 4% of research monies raised. But hey, let's make it into one great big competition of misery, a pitiful race to 6feet under and toss out terms like 'sexy' or 'unfair'. There's no such fucking thing when it comes to paediatric cancer.

Don't like a petition, don't sign it. But come out with how 'unfair' it is and all I can think is the litany of children's names I came to know over the past 5 years, every one of them dead.

When you get to the point where you make bitter comparisons among diseases that ravage, disable and kill children, you need to see a therapist. That's no way to live.

Cancer is a major cause of death in children, that's why people raise money for research into it.

PigletWasPoohsFriend Sat 18-Mar-17 19:05:21

No. I don't think so.

You are entitled to your opinion but as someone who currently has cancer and is struggling I find it offensive to call it 'sexy'

Ihavefriends Sat 18-Mar-17 19:21:28

In terms of raising money. The many disease entities that come under "cancer" are much more "appealing" than other, just as awful, disease entities. It's relative, and I was talking about funding.

Clearly cancer is fucking awful.

But so is neurofibromatosis, so is MS, so are many chromosomal abnormalities, so is malaria, so is Pick's disease, so are so many other diseases. I respect that pressure groups pressure. But "cancer" already is relatively "easily" fundraised for.

Adequately funding the entire service, including research, would be something helpful.

I never meant cancer was sexy. I was talking about financing research. And like it or not, the word "cancer" already gets people digging deeper than malaria, or malnutrition. I don't know the figures, but I'd be surprised if, worldwide, more kids die of cancer, than of simple poverty.

CFSKate Sat 18-Mar-17 19:26:59

"Cancer is a major cause of death in children, that's why people raise money for research into it."

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

Miniwookie Sat 18-Mar-17 19:28:40

Yanbu. Making childhood cancer the 'foremost priority' of the NHS will necessarily reduce funding/research/treatments of other conditions. They should be campaigning for increased funding for the NHS as a whole. I have a child with an incurable, progressive genetic condition that requires ongoing treatment/monitoring. I would find it difficult if this was reduced because someone else's child's illness was seen as more important.

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