Gordon Brown's son has cystic fibrosis :(

[hulababy]

"Chancellor Gordon Brown has confirmed that his four-month-old son has been diagnosed with cystic fibrosis. "

What a sad, stessful blow to come to them, especially having already experienced the tragic loss of their baby daughter 4 years ago

What a lot of sadness for the Browns to have to face .

I hope that they have a lot of support.

Well naturally Fio.. that's why I come on MN.. I am training for the House of Commons! [grins]

The prescrip. thing is a minefield. On the adult board on the CF trust Meeting Place they are always wrestling with it.. there doesn't seem to be any definitive answers.. but working people with CF are definitely paying for their drugs in many cases.. and thro the nose

It IS sad, goes without saying.. but when DS was diagnosed, amongst all the turmoil, I had the genuine pleasure of seeing him turn from a little starving bag of bones with matchstick arms and legs, into a thriving bonny bouncing boy, who could at lasy digest his milk! (With the correct medication).

It must be 'worse' somehow to get a diagnose out of screening. But screening is still 100% the way to go.

Very expensive.. and DS was chucking Colomycin down the sink for crissiake.. the little git!!

peters medication for his DCM arent free. there was a period between his dx and our benefits kicking into place, and we had to pay out a few hundred on perscriptions, then claim it all back.

Words fail me Misdee.. All very well being able to claim it back but what if you hasn't been able to find it in the first place??!

we had to, he would've died otherwise. we had to really cut back until it was all sorted.

if he was stil lworking, as some patients do with dcm, then his scrit would have been costingus over £100 a month (it would be even higher now!)

Misdee!

"ShinyHappy for Prime Minister (and her dh for Minister for Food )"

the system sucks doesnt it!

i dont know if his post-transplant drugs are free afterwards either. will have to find out. mind you he has low thyroid now, so should be anyway.

they are NOT having the keys to my car. i lvoe it. i will pay for it rather than hand it back to DLA.

we have a good hospital SW.

Fio, I think some of the prescription thing is an age issue - as more and more CF people live longer and past the point of free prescriptions (16 or 18 if still at school) more have been paying charges. Quite anomalous but I got a really dreadful reply from my MP when I wrote to ask him to support free medication for CF people. Something along the lines of high cost of meds v life expectancy, finite resources, more effective to spend the money elsewhere...on the one hand he may have a point, on the other hand NOT when it's my nieces (not v good at being analytical when it gets personal).

OK - about to be interviewed by local radio re CF - Fio / ShinyHappyStar - anything you want me to say?? (they googled cf and found that I had done some fundraising so are hotfooting it over...)

hannahsaunt I agree that is that they have to pay, and I have no personal axe to grind. If I take my 2yo to the GP with a cold I will probably get sent away with a free prescription for calpol even though I am comfortably off and can afford to buy my own calpol. Yet these people are having to pay big ££££ for life-saving/life-enhancing drugs.

misdee, even if the drugs aren't free, you can get a prepayment certificate, which limits the annual amount to about £100, I think. (I have one, but can't remember how much it cost )

If you have to pay prescription charges for long-term medicines, it's worth getting a season ticket - at least that's one payment and cheaper than shelling out every time you see the doctor. Ask your GP or pharmacist for the form.

Very sad about Fraser esp. after Jennifer.

The system needs an overhaul. My dd will have to pay for her life-saving drugs when she's older too.

Glad that the Brown's have an early diagnosis for their son.

maybe now they will test all over uk for cf with the heel prick test.

we live in wales,so my dd was diagnosed at 6 weeks,so was started on the medicines and creon early.

our cf nurse told us that a woman in her 50's,with lots of children and grandchildren was diagnosed with cf just before our dd was!i dont know how she managed to stay well,and undiagnosed for so long!but it shows that there should be testing more widely done.her family all had to have tests done when she was diagnosed,which must have been awful for them all.

prepayment(season)ticket info- £95 a year

On the BBC news at 1am, it was stated that that CF screening it to be added to the newborn heelprick in April 2007 but today there seems to be some question again. April is not being mentioned.

Just emailed Jeremy Vine (Radio 2) with my views. I hope they are coming back to discuss CF further.

Hannah'sAunt, hope you got on ok with local radio. Sorry, didn't see you post earlier.

shiny i emailed jeremy vine aswell.didnt mention it though.not sure if they are going to discuss it further or not

shiny,have you been told about the salt therapy?the woman on teh jeremy vine show mentioned it.i asked our paediatrician about it and she said it wasnt available over here yet as it had just been tested in america.

dd has salt solution in summer,but this new therapy (it was in the last cf magazine,and i cant remeber teh name of it!)is supposed to be an all year round thing.

just found it on cftrust website.hypertonic saline solution.it says its widely used in the uk (so dont knwo what paediatrician was on about!) but was tested recently in new england.

inhaling it is supposed to help reak up teh mucus.

dont know if paed meant its not used on babies or not,dont know.but will ask about it again when we go again.

by the way shiny,when we went to the annual assessment,dd has put lots of weight on,grown 3 cm since july,and scored 100/100 on the chart (cant remember the name of that but its the scoring syustem for tehir overall health)