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 Is the UK ignoring children with cancer?

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Mrs-G
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PostSubject: Is the UK ignoring children with cancer?   Fri Mar 23, 2012 11:48 am

Having recently witnessed first hand how badly a child with cancer suffers, I'd like to know your thoughts on the NHS's policy for the treatment of various childrens cancers.

There is a standard procedure/protocol for the initial treatment, chemotherapy, surgery and radiotherapy .......if that fails there is very little left to offer in the UK.

Many children and their families find themselves having to raise hundreds of thousands of pounds to travel to other countries, mainly the USA for specialist treatments....often many children die before this treatment can be funded.

Should these treatments be readily available in the UK or at least funded by the government for over seas therapies or do you think that we do a good enough job here?

Your opinions would be very much appreciated, I would also like to hear the opinions of others from over seas to say what level of care children get in your own countries.



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buttercup

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PostSubject: Re: Is the UK ignoring children with cancer?   Fri Mar 23, 2012 3:56 pm

Obviously - if potentially working treatment exists but isn't an option - not enough is being done; However, there's only so much money. Although the government and NHS ( which appears remarkably top heavy ) do seem to enjoy wasting money and making poor decisions, I believe that the biggest change requires greater regulation in the pharmacology industry ( or better yet, the complete decommodification of medicine ).

I don't mean to say that pharmaceutical companies are evil but pharmaceutical companies are evil...
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Spellarella
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PostSubject: Re: Is the UK ignoring children with cancer?   Fri Mar 23, 2012 7:06 pm

Its a cruel disease made worse by irrationaly policies. Not only the children suffering so are older people. Over a certain age the NHS will and does refuse to treat. You've lived long enough seems to be the adage they might as well say.


Also they are trying to run the NHS as a business. It can't be. People do not fall ill and get better once their £50 limit has been reached.

Post code lottery does not help either. You are ill = you should be treated. Drugs are trialled, getting them or on a trial is hard enough. NICE is not nice, it can really on comfy back pockets from the big pharamceticals and take one over another.

Cancer is complex certain ones respond, others accelarate some need that medcine that NICE have ignored. No win where ever you look. Children bounce back yet too many are being left without the right treatment or givena lower one and by the time the good one comes around its too late.

Parents even ourselves, if you educate yourself to find ut how or what is best, to be expected outlooks etc. You will be cursed by the NHS. Ignorance the want, they save money on stupidty and that is what they belive normal people are stupid. Arm yourself and fight for it but the knock on effect is, they hosptial will close rank and that door once shut is bloody hard getting back in.

Educate, fight and use whatever you can to gain the best you can and stick with t, it will be thankless. Media works wonders and even appeals to the foreign hosptials can gain you access.

Sad part is, if your child passes on, the noise you've made may spare another child. Sad but true life hurts and cankick you in the teeth but hope can get you or somebody else through the shit policy and notions of the NHS.
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PostSubject: Re: Is the UK ignoring children with cancer?   Sat Mar 24, 2012 2:50 am

The "sad part is" that you may save another child ... what ?
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PostSubject: Re: Is the UK ignoring children with cancer?   Sat Mar 24, 2012 5:48 pm

buttercup wrote:
The "sad part is" that you may save another child ... what ?
When you quote, somebody quote it as it is written.

Sad part is, if your child passes on, the noise you've made, may spare another child. Sad but true life hurts and cankick you in the teeth but hope can get you or somebody else through the shit policy and notions of the NHS

Which is what I wrote. Meaning if you read it all, if you make enough noise about lack of treatment, via Drs, hosptials and the media especially, etc but your child dies before the specialist treatment starts. That 'noise' you've made may help another family/child gain the treatment they need.

Publicity can open doors and hi light issues. Its a sell, sell world.

As Mrs G said, the speacialists care or advance treatment is overseas. American is one of those excellence centres, but that is due to the health system there beeing paid for by its population. Don't pay or can't afford it then you get cheap clinics that are set up to provide basic medical help or else you go with out. The Maya clinic is an excellance cutting edge clinic in the USA. It leads on many medical issues. What people do not often know is the Maya clinic can and does take NHS (UK) patitents. To gain it you need the PCT approval which your GP instigates.

Also pays to politily email the hosptials and specialists surgeon/consultants especially the Professors about what you want and is it in their area of expertises. If it isn't and I know this I do it myself, some will put you in touch with the right people. I have a wonderful surgeon in Southampton who could nt help me, but new several who could and keeps in touch to see how things are going. That is a rare briliiant Dr. Rare because the Apollo oathe he took, he still takes seriously and upholds that oathe to care for people in the best way. Many do not and couldn't give a fig. That applies to nurses and other medical staff too. Care has vanished and been replaced by time scales and fst turnover of beds.
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buttercup

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PostSubject: Re: Is the UK ignoring children with cancer?   Sat Mar 24, 2012 6:14 pm

Relax. I was only pointing out the poor grammar because it was quite a dramatic and interesting mistake, not because I didn't understand what you meant.

Not that I disagree with you entirely but I think that you are unfairly exaggerating the lack of care; Yes, it appears that those in charge are trying their hardest to create an environment in which it's difficult to do so but I'm not sure that it can be taken as a reflection of the front line staff as a whole.

Having said that, I'm not exactly a frequent patient and I only know a few nurses...
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Spellarella
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PostSubject: Re: Is the UK ignoring children with cancer?   Sun Mar 25, 2012 6:04 pm

Woop woop grammar police are in the building. grimmace And I didn't write
Quote :
The "sad part is" that you may save another child

I wrote
Quote :
Sad part is, if your child passes on, the noise you've made, may spare another child
The sad part in all of this is: that if your child passes away; the noise you have made may spare another childs life.

ok grammar poleece doz i git a qallyfurkayshun fur writing it perfecktally.
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buttercup

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PostSubject: Re: Is the UK ignoring children with cancer?   Mon Mar 26, 2012 2:01 am

Ha! Well, it's a good job that I'm not too anal about it because we'd never get anywhere... lol!

By the way, your amendments aren't any better tongue


Anyway, I feel like this is probably the wrong thread to derail too much.
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Mileeba



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PostSubject: Re: Is the UK ignoring children with cancer?   Mon Mar 26, 2012 3:44 am

Might be I have a different view on this. When we're in the UK, it comes across as to get specific treatment you have to be near those area of expertise. Finding out the information of who or where is best is not readily available. Cancer in the old and very young seems the weak spot in treatment. Moneys spent elsewhere on other more valued services, like heart and transplants.

When we're in the US, and as its a paid for service, you do get access to the the top programs and Drs. If you're not paying and on a poor income, then its worse than the NHS. The programs open to you are free clinics that are basic. Occasionally those clinics can offer the best treatment. Attendling trials can give you access to the experts, some of which do appear inthe free clinics. No all do


I like the NHS for what it is, health for all. I loathe it for the wastage on excess manger level staff and its business head. You have to pay for the best, not waste money on more mangers. Medcine moves on in rapid bursts. Denying treatment is plain wrong acorss the baord.
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