Keeping Up the Pressure for a Cancer Drugs Fund in Wales

[Whippit]

Yesterday I was contacted by the South-Wales Echo to re-run the story about moving to England to access the cancer drug Avastin. They've got a lead on the front page and my pic and article appears on P 3!!!!

This is particularly relevant this week as Jeremy Hunt complained at the Britain Against Cancer Conference about the influx of Welsh patients into England to access the English National Cancer Drugs Fund and I hope puts pressure on the Welsh Government to reconsider their stance and create a fair system to distribute drugs. The current system has been termed a 'postcode lottery' by the Health Minister Mark Drakeford.

You can Google the blog by searching for 'Annie Mulholland'.

[Hidden]

Hi Annie ..

I was very moved by the piece. You're not just highlighting the drugs issue, you're highlighting the fact that woman going through these treatments are human, vulnerable and it's an enormous ordeal for many. It also highlights, to my mind,your integrity of spirit and tenderness. There are some real issues surrounding this disease and I've found that doors are shut sometimes when they should be open. I'm so glad about the Be Clear on Cancer Ovarian campaign because it shows the doors are opening. I think there will have to be a review of cancer services in Wales to make sure money is channelled where it's needed. I'm glad you're there on so many levels for people. Love Tina x x

[Whippit in reply to Hidden]

Thanks so much for your support Tina. Doing something like this press-release is a bit daunting because you have no control over what the reporter decides is newsworthy and it does expose the person at the source of the story. What is heartening is that the media in Wales, - TV, Radio and newspapers - are concerned at the injustices here and the way people with cancer are dying before they might because of a lack of access to drugs.

I'm so delighted to hear the Be Clear on Cancer is starting in your area, and that Scotland and Northern Ireland are also having national awareness-raising campaigns. We have nothing in Wales even though I did talk with the Health Minister about having a voluntary/government team set up to keep the costs down. The only way to keep Ovarian Cancer, and indeed a National Cancer Drugs Fund, on the Agenda is to work with the media and continue to nip the heels of the politicians who are meant to be listening to the electorate. I know you're doing your bit too in the Sefton area.

[Hidden in reply to Whippit]

Hi Anne .. and good morning .. It's 9.09 so I've slept for nine hours .. the longest uninterrupted sleep for about three years. I think the previous record's three! I must have felt that the trouble of the world is off my shoulders having laid bare the misdiagnosis scandal. I've learned that things change slowly in a democracy and whilst I thank the Lordie Lord I live in one, I think that sometimes decisions have to be made quickly, particularly when it involves people who are dying. When a person is murdered, police officers don't have a meeting and say they'll put the issue on the agenda sometime on the future. No, they cordon the area off and find out who is responsible. I'm uncomfortable with the public exposure aspect as is my hubbie and I feel guilty about giving up our privacy in a way when really, I didn't have his agreement. Even when the family aren't mentioned, they're implicated, but he says it's such an injustice, that he'll have to get on with it. I haven't even done this on the scale you have, but I can imagine your feelings and I want to thank you for highlighting your journey. I've added your blog to my favourites. I'll attach the link to this post later if that's ok with you? I have to get some coffee now and give my neighbour's cat some attention and affection! Love Tina x x

[Whippit in reply to Hidden]

What a wonderful feeling to wake up from a 9 hour sleep. You must've felt almost shocked. I know I would.

It is exposure on a level I haven't broached before but we have had a week of news items about apartheid in South Africa. I was humbled by the testimonies of parents who said they were proud their children were born free and were so positive about that. Wow our fight is a drop in the ocean to that and we are entitled to our say.

Please do add and share the link to my blog. OK, it's an issue for Wales, Scotland and N Ireland and it's one I've got round. Not so easy for Sharon or Una to nip over the border. I'm a Londoner born and bred and only came to Wales for a dare so I don't have a problem returning home for treatment.

Sadly very different from others.

The original article in the Wales papers can be found at walesonline.co.uk/news/wale...

xxxx

[citrine]

Well done Annie. There may be times when the chemo knocks you for six but you keep fighting the good fight. So important that politicians and the public see the real women affected by these issues.

Love Mary xx

[vipervictoria]

All good work, and very well done, but alas, there is more. It's not widely known that, if you apply clinical audits to two different oncologists working on the same cancer at the same hospital, sometimes there are radically different results? This is what happened at the hospital where I was first treated - the oncologist who treated me was given OC because she got good results with breast cancer, a completely different disease. She went on to make such a mess of OC that most of her patients went elsewhere, but she still has some patients, having been given some sort of refresher course. I think that clinical audits relating to individual oncologists should be published. These people have our lives in their hands. Some hospitals do this voluntarily, but most do not. Also, the figures of percentages of patients who have gone elsewhere are relevant too. Vxxx

[Whippit in reply to vipervictoria]

I agree V. Unfortunately in Wales we don't have a charter to give us a choice of hospital so that patients can select to go elsewhere. I wish we did because I would have attended the hospital in Swansea and not in Cardiff. Not because of the oncologists. They're lovely, but because of the facilities and clinical trials available in Swansea - plus drugs if you live there.

There is always work to be done to improve services but doctors who perform poorly shouldn't be tolerated. Hopefully they are the minority and you were just very unlucky in your first hospital. There are one or two notables mentioned on this site too who might take a bit of feedback from their patients and improve.

x Annie

[Hidden]

Thanks for your permission Annie. Here's the link to your blog ...

targetovariancancer.org.uk/...

Love

Tina x x

[coochy]

Hi Annie

Well done i think i will print your article that was in the paper and send it to my local MP, you are doing a great job and hopefully you will make these polititans stand up and listen. I've also heard this "postcode lottery" term used time and time again which stinks. You made me laugh.....page 3 indeed

Take care

Elaine x

[Whippit in reply to coochy]

David Cameron recently described the Welsh Government as being in a Power Bubble. I think he's right. I feel as though we all need to be working together on this and I understand Target have some plans about getting us all together from the devolved nations. Xxx