Rally for Beth Margetson

[Whippit]

I attended a rally yesterday in support of a woman I'd heard about from WendyD and last week through Facebook - Beth Margetson. Beth lives in Porthcawl, South Wales. She has breast cancer with metastases all over her body. We have no Cancer Drugs Fund in Wales and so Beth's oncologist had to apply for a drug, Afinitor, from her local health board. Her health board is the Aneurin Bevan which has so recently let Chris (Darragh) down. Beth's application was turned down as 'it was not exceptional'. Afinitor would have been available to Beth via the Cancer Drugs Fund had she lived in England.

I sought Beth out at the rally and told her my solution to the injustice going on in Wales. Get a primary address in England and live as a visitor in Wales. I met dozens of women with cancer at the rally all facing the same desperate situation as Beth.

Jean (Yogin01UK) and I appear on BBC Wales on Wednesday in The Wales Report at 10:30 p.m. to complain about the drugs postcode lottery in Wales. Jean's health board, Abertawe Bro Morgannwg, funds Avastin, my former health board, Cardiff and the Vale, has never funded Avastin. Chris's (Darragh) health board, Aneurin Bevan, has sometimes funded Avastin. There are no criteria for decisions that are affecting the length and quality of people's lives in Wales. They are made behind closed doors and the rationale for refusal is rarely given.

I was told by the ITV reporter yesterday that it is known that people with cancer are already changing their primary address from Wales to England in search of better treatment. Nobody has 'gone public' before. I hope to raise awareness of what's going on and I hope David Cameron starts to worry about the health exodus from Wales and pressures the Government here to address the poor 5-year cancer survival rates. Wales has the worse 5-year survival rates in the UK.

This situation affects everyone in the UK because if people move from Wales to England to access the National Cancer Drugs Fund there is less to go round for the people for whom it was intended. Let's start talking about it and looking for a resolution.

This post is open to Everyone in the hope that people who can do something about it, read it, and talk about it, even if it's just to complain to their MPs in England that the National Cancer Drugs Fund is being cunningly commandeered.

with love xxx Annie

[Hidden]

Hi Annie .. I'll be watching on Wednesday .. I think I can get it on Freeview .. It's really good that Beth is being supported. I think at the very least, patients should be told why their application has been rejected and why it isn't exceptional because how does someone make an appeal based on the original decision? Also, if things are done behind closed doors, I think it can lead to mistrust. Love Tina x x

[Whippit in reply to Hidden]

Dear Tina, you're absolutely right on all counts. I've heard you can access BBC Wales on Freeview as a very dear friend in Scotland rang just now to say they'd be watching on Wednesday. I thought Jean was absolutely first-rate in all she said and makes her points very well.

The problem of applications being rejected by the Health Boards, I suspect, is no more than a lack of funds, and perhaps that the Health Board sees the need to purchase basic equipment that will help everyone rather than using their 'special fund' to fund individual patients. They have that choice in Wales. In a way I'd rather the Welsh NHS were honest because it's something people can then deal with. You're absolutely right. The lack of criteria and clarity as to who might receive drugs and who might not has stirred up anger and a huge amount of distrust here. I was really upset to hear some pretty anarchic commentary yesterday but that happens because people are desperate and confused, and they are kept in the dark by a government that has always been rather opaque in its dealings.

I'd like to say right now, to stop anyone worrying unnecessarily, that people living in Wales with cancers that can be cured are fine because the standard treatment available in any hospital in the UK will give them the optimum outcome. The only people being 'done down' are those struck with incurable cancers who are reliant on 'special funds' to provide non-standard drugs, or drugs that are only currently available in clinical trials in which patients participate.

Of course a small country with 3M people can't have a cancer centre which is a centre of excellence for all cancers and it is reasonable to specialise on the most prevalent cancers in the region which, as I understand it, are throat and lung for us here in Wales. It's a logistical and financial impossibility to try to provide a comprehensive service for advanced and incurable ovarian cancer. That being the case the Government of Wales needs to be open with the people. We need to discuss what can be done for patients such as Bethan, Chris and I, and many more, who are in effect receiving worse treatment than patients in other parts of the UK.

Apparently our 'bit' including Monty will be just 8 minutes of the whole programme. I'm looking forward to seeing what they make of it. Huw Edwards is an excellent presenter.

Thanks so much for your support and comments. xx love Annie

[Hilsuk]

Hi-will stay awake specially to watch this Annie x

[Whippit in reply to Hilsuk]

I'll have to stay awake too Hilary. Xx

[wendydee]

Glad you were able to make the connection with Bethan, Annie. I really think that in matters such as this, there is strength in lobbying on a wider front. I'll be watching BBC 1 Wales (I often do, anyway!) for those with Sky, it's either channel BBC1 on 952 or BBC 2 Wales is 971. Looking forward to seeing the programme!

Love Wendy xx

[postmistress in reply to wendydee]

I am glad that there some good people helping you to get the treatment you need!

[Whippit in reply to postmistress]

Thanks Postmistress. I'm getting the treatment I need by changing my primary address to England. Let's hope those people in Wales who think that route is not right for them get the support from the Government of Wales and soon because none of us have much time to lose.

Sending loads of love xxx Annie

[drdu]

Will try to watch this if I can get it on Freeview. Well done.

E xx