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HELP HELP HELP Kidney cancer!!

(24 Posts)
Funbags Sat 09-Aug-08 10:50:54

This is a bit long but please please read on.

My Dad has terminal kidney cancer. This does not respond to chemo and there is no cure. Dad?s had surgery to remove his cancer, but it has now spread to his lungs. Despite all this he has few symptoms and feels well.

There is a drug available that is clinically proven to be effective, likely to keep him feeling well and could more than double his life expectancy (giving him an extra 1-3 years), and has few side effects.

Only one problem - depending on where you live you either get it free, or you have to pay £4000 per month for it and your cancer care.

Your NHS cancer care (consultant, scans the lot) stop's being free if you start buying the drug. This drug, Sutent, and 3 others like it are widely available and prescribed in the rest of Europe and the U.S, only the UK does not provide them as a matter of course. In the UK we have the one of highest spends per head on cancer research -yet we only spend 60% on cancer drugs compared to the rest of Western Europe.

Can you imagine it - you've just been told you have a terminal illness then you have to make a choice about taking a drug that will cost you everything you have worked for (home, business, pension) and thought you'd be leaving your wife and kids, so you can have a bit more time with them, and not spend that time feeling like crap.

Just to remind everyone of Gordon Brown's speech on the 60th anniversary of the NHS;

"As individuals in Britain we know that - should serious illness strike - we will be cared for and the cost of that care will be absorbed not by us as individuals, but by all of us together - in a comprehensive healthcare system publicly funded by taxation"

What a joke!!!

Yesterday the National Institute of Clinical Excellence made an interim decision on funding these drugs in the NHS. They admitted that these drugs were clinically effective, but think they are not "cost effective". They cost the NHS about £2000 per month. This means even less people will now have access to them. One Primary Care Trust has decided that this is such a bad decision that they will fund the drugs regardless. Most of the others will use the decision to cut costs, or weren?t funding these important drugs anyway.

If Dad got run over and was in a high dependency bed costing hundreds of pounds per day no one would question the cost effectiveness of keeping him there. It seems the NHS, NICE and the Department of Health does not value this lives of cancer patients in the same way.

N.I.C.E will make a final decision about funding next January. In the meantime kidney cancer patients need your support.

If you don?t want this for my Dad, or god forbid yourself, your family or anyone else you care about then follow the link below to sign the petition. Please send this to everyone you know. Thanks for your support.

petitions.pm.gov.uk/kidneycancer/

Love Funbags xx

Blandmum Sat 09-Aug-08 10:53:30

Signed.

Hope that things go as well as they can for you father. Is he getting support from the Macmillan nurses? Are you and the rest of the family getting the suport that you all need? And remember that good paliative care can also extend the qualntity of your fathers life, and well as improving its quality.

Hugs

ImnotOK Sat 09-Aug-08 10:56:30

Signed ---my mum had a tumour on her kidney and had to have it removed .

I am sorry for you and yours xxx

windyweather Sat 09-Aug-08 11:01:08

Signed x

Sawyer64 Sat 09-Aug-08 11:05:08

Signed.

Samantha28 Sat 09-Aug-08 11:07:40

done

UniversallyChallenged Sat 09-Aug-08 12:29:34

Not coming up when i click for some reason - will keep trying as VERY close to my heart sad wishing you and your family all the best funbags xx

bumping anyway

silvermum Sat 09-Aug-08 13:26:51

am not an expert on this but might there be an option of getting treatment in the EU and reclaiming the costs from the NHS?? in theory this is possible in some cases, though it may relate more to surgery than to drug treatment.
have you had any expert advice about your options? (legal or otherwise)?
might there be something clever you could do to get him registered as a patient in an area where it is prescribed on the NHS? (realise it might involve a lot of upheaval/renting a flat in the area or whatever but might be cheaper than £4000 a month and worth it given how high the stakes are)
This is an absolutely horrible situation and my heart goes out to you and your family. Ostensibly the government is committed to ending the postcode lottery on prescribing - but that day i fear will be a long time coming.

Funbags Sat 09-Aug-08 13:35:01

A word of warnng - this link is working but the site does not let you into sign (feels like a conspiracy). Bloody typical to get this the week that the story breaks.

Do keep trying. I have mailed them asking for it to be fixed ASAP.

funbags xx

Helsbels4 Sat 09-Aug-08 13:40:59

Wouldn't let me either but will keep trying x

Funbags Sat 09-Aug-08 22:09:18

Thank you everyone so much for signing up -just had a look and its working again. So anyone new please sign!

Silvermum - will follow this up, thank you.

funbags x

Grublin Sat 09-Aug-08 22:21:14

Signed.
My childminder & friend had her kidney removed a month ago due to kidney cancer.
She is having a biopsy at the end of this month to see if she is all clear.

Funbags Tue 12-Aug-08 21:01:26

thanks everyone!

also bump

singyswife Tue 12-Aug-08 21:08:44

Signed it. My dad had cancer last year (in his leg) and had to pay for private treatment as the nhs wanted to wait so long I think it would have killed him. Bloody nhs,

happymumathome Wed 13-Aug-08 12:58:49

Signed it, hope your Dad keeps well for as long as possible x

Puppie Wed 13-Aug-08 13:04:22

Signed x

TheMadHouse Wed 13-Aug-08 13:11:32

signed

shewhoneverdusts Wed 13-Aug-08 17:48:39

My sister has secondary kidney cancer and has been left with no options now as sll treatments have failed to halt the progression of this awful disease.
SIGNED

stuffing Wed 13-Aug-08 23:19:25

signed xx

mazzystar Wed 13-Aug-08 23:26:25

signed
wonderful friend of my mums has had kidney cancer - she has been lucky that it was caught quickly and with one fully kidney removed she is in remission.
wishing you and your dad hope and strength, funbags

ThatBigGermanPrison Wed 13-Aug-08 23:27:35

signed

Funbags Wed 13-Aug-08 23:50:39

thanks everyone for your support I realy really appreciate this and so does dad. Its one small thing I know but the little things all add to the momentum for change.

Grublin and shewhoneverdusts, should you need any support with getting treatment becuse the PCT have turned down things like Sutent, kate Spall at the Pamela Northcott trust is a truly wonderful woman who will do all she can to help. She ought to have every honour possible bestowed upon her for her tireless work. I hope you loved ones do as well as they possibly can with thier respective prognoses. best wishes to them bothe Funbagsx

Elibean Thu 14-Aug-08 10:26:22

Signed xx

eth37 Thu 14-Aug-08 12:00:34

signed xxx

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