Did anybody see the news last night on the two-tier NHS. ITV asked people to email in with their stories, so I did. They have contacted me and are trying to set up an interview for tomorrow! It’s kind of freaked me out a biti, I’m not sure I want to be on the telly, however at the same time if necessary we need to stand up and be counted for and I shouldn’t expect someone else to do something I won’t.
The only concern i said to the guy was that I have 2 young kids, who know I am ill and require medicine but would not want him to use the word terminal etc he said he would respect that fully.
I think I need you all to give me a bit of dutch courage just in case this is pulled off. The man at ITV said he was going to see if he could set something up with STV (regional tv station) and he would get back to me.
Diane xx
You go girl!
Well done for contacting them and hopefully getting your chance to tell the story from the side of the secondary bc sufferer rather than the idiots at No10 telling us what we can and can’t do. I hope you have the courage to do this and do give us an update so we can all watch you on TV! I don’t know your ‘story’ as I’ve only just picked up this thread but I expect it’s very appropriate otherwise they wouldn’t have contacted you.
We’ll all be thinking of you tomorrow and sending cyber courage!
Nicky x
I was just diagnosed in February with secondaries, however I am busy fundraising to allow me access to drugs that are not available on the NHS. However, I have been told that if I buy any private medicine I will be thrown of the NHS, which only adds to the burden big style. I just said that I have 2 young kids and want to make sure I do everything that I can, including getting the medical help available whether or not it is on the NHS>
Diane
Hi Diane
How exciting and well done and thank you for doing this for us. We need people to speak up and your email clearly caught their attention as someone who is worth interviewing. I think you are right to ensure that they dont go on too much about terminal illness as then it gets away from the real issues of the NHS. You will be fine once you get going!
Good luck
Cathy
x
Hi Diane
I hope you do go ahead as we all know there is more than a two tier system and it is really important that all drugs are available to all that need them.
You certainly have my backing.
Love Debsxxx
Hi Diane
thats great and as Cathy says its about the issues of the NHS, go for it we are all behind you. It is totally inhumane that you can be thrown off NHS for seeking the right help and for drugs that are widely available in Europe and USA. Private healthcare in total is beyond any normal persons means - it means that they are saying we have to accept an NHS which doesnt give access to best care or we have NOTHING, its like saying if you buy an extra for your child education they will be chucked out of school, or if you have dentistry privately they will never provide NHS care, or if someone paints your house they dont have to sweep your street…anyway you get my drift of course, i will stop!!
Let us know how you get on!
Cathy
Good luck with the interview Diane.
Yes good luck with the interview. I too would have to be on TV so can imagine your fears.
The issue of co payments is ludicrous. We are able to pay privately for mammograms, see a consultant, then opt into NHS so why can’t people pay for drugs while getting other treatment on NHS.
More importantly why is there a NHS post code lottery? Why is UK so behind US and Europe in provision of some cancer drugs? Why are people being forced to consider spending their own money on drugs? What about the people who could never in a million years pay for those drugs?
best wishes
Jane
Hi to everyone
I have just had a phone call from … cant say as they may have to kill me!. As we all know breast cancer is trying to do that.
Apparently Alan Johnson is talking at the NHS conferance in Manchester and it is looking like another government U turn
rumour has it they are going to give in on co-payment. So lets all keep our fingers crossed.
This can only be good news for us all.
Love Debsxxx
Hi Diane, thank you for taking this stand. Please do let us know when we can watch.
Wow…hope your informant is right Debs.
Jane
I’m waiting to hear from ITV, he said that logistically he has to try and find a camera crew close to me to be able to do it but is hopeful that STV will help. Last night the ITV news had a bit an the two tier wystem and reported that there is a debate in the commons on Wednesday to discuss it (at least I think it’s the commons) it’s definately the politicians that are discussing it.
I’ll be fne if I can get myself a bit riled up! I can’t say I’ve ever wanted to be or speak on the telly especially with my accent but if it comes of then I’m doing it.
I will let you know as soon as I know.
Diane
Good for you Diane, well done
Hi
Good Luck Diane, keep us informed.
(My breast care nurse told me today that lapatinib was liscened on Friday and I should keep asking onc about it but not to tell onc it was her who told me! The whole situation is mad.)
Take Care
Liz x
Hi Diane - Good Luck - and thank you. Co-payment, Nice guidelines are all a mess - everyone should get the best treatment possible.
Geraldine
Hi again
I’ve read in the Sunday Times and the Daily Telegraph today that the penalising of NHS patients who top up their treatment with private payments will stop in an announcement on Wednesday. The argument for a single tier system doesn’t work as we can already pay for private beds where a hospital allows it and you can top up your NHS dental treatment already. It’s reported that the government need a vote winner (like that’s going to happen!) by doing this U turn and also they believe it doesn’t happen that often so it can be funded. Let’s hope all of these reports are true!
Nicky x
ps is lapantinib Tykerb (sp?), if so it was licensed on Friday (again, reported in D Tel so assume this is correct)
Hi to all again
just had a call from ITV it is looking really good the media are expecting a statement on Wednesday from Alan Johnson
had an e mail from solicitor who represented me in January so lots of movement it can only be good news surely?
If anyone else contacts me I will keep you posted.
Yes Tykerb was licensed last week so that has got to be good news for er+ sufferers.
Love Debsxxx
Hi Everyone
Just to let you know, it’s going ahead STV are coming to my house at lunchtime today. I’m absolutely bricking it -not sure when it will go out on the telly all i know is that it’s ITV so should be national sometime tonight.
Can i just say on t eh Tykerb medicine, this medicine helps people who give off the EGFR receptor (which 65% of people with triple negative do give off) so it’s worth asking your onc to be tested for this as well.
Diane
I take my hat off to you (maybe not literally) good luck