ITV News

well done Diane

Will try to watch news tonight. The current situation is appalling, no-one should be placed in that position.

Good luck!

Hi Diane
brilliant news good luck

Love Debsxxx

Good luck Diane - let us know if on tonight. Well done xxx

You will be great- we are all behind you and it will be easy because we all agree situation apalling!!

Hi Diane
just heard Alan Johnson has brought his statement forward and it will be today at 2-30 so lets hope he has changed his mind re co payment.
Love Debsxxx

Hope the interview goes well Diane.

Can anyone answer this question:

I have done a google search and yes tykerb may be effective booth against both her2(erb2) receptor and EGFR (erb1) receptors. The latter, as Diane says, may be present in some triple negative cancers…my question is: does anyone know any trials or even anecdotal evidence of tykerb being used successfully to treat triple negative disease???

Jane Well the top up review has been announced - I wonder how long this will really take?


Hi Geraldine
just had radio Cornwall on the phone and the statement said he will review it in October typical he will have his summer hols first!

Love Debsxxx


I believe that in the original clinical trials this was the findings that it was not just her2 but EGFR. I’m not even sure that the pathologists will have tested my biopsy for this but I have a meeting with onc on Tuesday so will ask the questions.

Well they are just away it’s going to be on STV at 6pm which is the scottish regional news and ITV. I don’t have a time for ITV it will either be 6.30pm or 10pm although I get the feeling that STV are doing a longer piece. I hope I come across okay they chat to you for about half an hour so it’s really difficult to know what they will edit and how I will come across - fingers crossed!!

Diane xx

Well it was shown on STV, which was great. However as the review is only for England and Wales I don’t think it will be on ITV although they are still covering the story. It will give me more ammo to fight for the same rights here in Scotland.

Hi Diane

So sorry we couldn’t see you here in England on the regional ITV news programmes. I watched the piece on the main ITV news at 6.30 – they showed people living in England, and the BBC news at 6.00 pm showed a man living in Wales but getting his health care in England, who had been refused NHS treatment when they bought their own meds. In both reports, Dr. Karol Sikora (wonderful man!) made the point that leaving it until October before anyone even considers the issue will be too late for many of us. But I’m really pleased that this looks like it will be resolved eventually, so that people purchasing non-NICE or not-available-in-your-PCT meds will no longer be penalised by the withdrawal of NHS care because they want to stay alive.

Marilyn x

Please, please can everyone continue to bombard the media and NHS regarding Top - up payments. The latest from the DOH is that top up for extra drugs is a matter for clinitians not the government. This is such a U turn, there was no mention of a 2 tier system. The government is looking for a way out of the situation so the omens are good. Its a far cry from the stance they have always taken. I have been fighting the battle since last September and have spoken repeatly to the Media. Unfortunately every time there is a new development they ask for a statement, which I am happy to give, but use an old photo of me in a baseball cap, I look a bu**ar in it. I will have to improve my public image. We need to let the public see our faces and hear our voices. Since the announcement about the review I have spoken to the press and hopefully the Jeremy Vine programme tomorrow. So please, there are so many of us, let us be heard. Diane, go for it. its a bit scary but my experience has been that the reporters will make you feel at ease, just relax and explain your situation. Good luck, Mills

Thanks Mills, I have currently started up a new thread in the hope that people north of the border will get this raised in the Scottish Parliament. I will wait and see the response I get. It is so much easier to do this if we all stick together and be heard LOUD AND CLEAR.

It is a disgrace that we can’t get the drugs on the NHS but we don’t have time to mess around waiting on the years it takes some of them to get passed (totally down to money!) so for those of us that want to pay lets get the chance!



Hi Diane and Mills

Diane you are doing a brilliant job keep going you know we all feel the same it should not matter where we live these drugs need to be made available to all.
Couldnt say until now but BBC breakfast tv are coming here tomorrow and are supposed to be linking me up to the guy Alan Johnson has passed the co payment problem onto so I hope you will see it and I will bring up the subject of area so I hope this will help your case.
Mills great to see you are back on the forum I have missed you. Have they(BBC) been in touch with you I hope you will be linked up tomorrow. My image will really please them no hair eyelashes etc look like an alien so maybe they will put a bag over my face! Not bothered as long as it gets the point across.

Love to all Debsxxx

Hi Diane - my sister who lives in Edinburgh saw you and gave me a call. She said you were great. It’s hard to believe the discrepancies and nonsense that is happening on this matter throughout the UK. Mills is right it’s the human side of this argument we will easily win - the rest should then follow.

Thank you - Geraldine


I seen the very end of you, my sister has recorded it so i will see it later today.

I wish I could find yours!
Had to go from their lead had lots I wanted to say, maybe next time.
If we keep the pressure up they will have to listen and lets hope they get these drugs available to all with a bit more speed.

Love Debsxxx

I wish you could as well Debs, I’ve had a look at the STV website to try and get the link but can’t find it!! I get the hubby to look tonight hopefully he will find it.


Hi all…probably a bit late on this one …however…

Private health is certainly not available to the ‘rich’ alone…I am not rich…I just did a mediocre job (motor insurance team leader for 7 years) to qualify for the ‘free’ benefit of private care. I pay a tax deduction of about £500 a year and have done so for the last 11 years.

I get three cycles of chemo, no trial drugs which are not covered (NEW drugs are) and care as an NHS patient for which I can reclaim £200 per night (if I wish). I have mixed and matched my treatment without question, I leave a place in the extremely busy chemo ward in Southampton and I do not expect to be treated any differently when in NHS care - in fact they have proved every time to be better equipped/experienced and staffed. I have had scans on private machines thus freeing the NHS ones. I have contacted my GP and asked for the ‘good’ anti sickness if I need it when the private ends and he has no problem with that. My mastectomy was NHS within a week of diagnosis and I have NEVER had to wait for results on either private or NHS.

So do not forget - there are those of us who work(ed) full time, never claimed from the state, and are certainly not RICH who also benefit from this two tier system…I am so lucky to be in a good NHS trust and to be able to mix my options…AS IS MY RIGHT.

Ahhh that feels better!!!

Jan xx