Annie

[TrishLey]

Annie is on the front of the Daily Mail. Just read the article now. Well done Annie on a very relevant and important piece of journalism.

Xxx

Trish

[Whippit]

Hi Trish, I'm keeping a low profile on my campaign for fair access to cancer treatments in Wales as I know some people here have enough to deal with and it upsets them to worry about the politics of cancer care. We have a Facebook Group:

facebook.com/groups/OneVoic....

It's a Campaign for Fair Access to Cancer Treatments. Everyone is welcome to join and it's a helpful library of relevant documents, press articles, radio interviews, TV episodes which we hope will help unravel the mystery and draw a clear line between the truth and media sensation.

The Welsh Assembly Government continue to deny there's a problem despite representations from Royal College of Surgeons, Royal College of Emergency Medicine, Sir Bruce Keogh of NHS England, David Cameron, Jeremy Hunt, Ann Clwyd MP (Rhondda), David Davies MP (Monmouthshire), Expert Witnesses who provided evidence at the recent Review of Cancer Services, and complaints from individual patients too numerous to list.

You have to separate the somewhat fanciful claims in the Daily Mail to read some very worrying facts: dailymail.co.uk/news/articl...

My daughter and son-in-law hooted with laughter at the claim I'm living in a 'cramped' house in Brixton though it does make for a sensational story. I do have a room of my own and an adjacent shower/loo in their 5-bedroom Victorian house.

Thanks for caring Trish. Thank you to everyone who's been so supportive over the last 17 months since I discovered I hadn't been told about a drug available on the NHS in Wales and started to look into things. It has not been an easy journey but it's one that has had a lot of silent support from some very senior people.

Sending love to you all. xx Annie

[iamstillme in reply to Whippit]

Hi Annie well done . It is really brave to tell your story and we value your continued campaign so hopefully all women will have the same access to care and drugs . Hope you are keeping well you looked fab in your pic

Love

Ally xx

[Whippit in reply to iamstillme]

Thanks Ally. What started out as a relatively modest investigation into access to Avastin in Wales has grown into a massive elephant which questions the way the NHS in Wales is run, the election campaign for the Labour Party, and treatments for all cancers.

I did get a lot of quiet support at hospital yesterday so I know there are people in very high places who really appreciate a patient speaking out. xxxx

[TrishLey in reply to Whippit]

I've been locked out of Health Unlocked on my Mac LOL. Annie, you are wonderful and so caring. I understand the 'low profile' but in all honestly it is the women who although they are having treatment stick their head above the parapet to help others that have to be admired and acknowledged. I am not for one second saying that we all don't do things to help each other and help other women in our situation or donate or raise money, everywoman battling this cruel disease is to be admired, respected and praised. Kind words and support and just getting up and getting on, are honestly enough. I understand that the situation and politics must be a worry but isn't it great that you are helping to alleviate this by drawing attention to it. Just wonderful.

xxx

Trish

[Whippit in reply to TrishLey]

My hospital are so incredibly caring. They seem to think I'm a bit of a celebrity and my CNS sat down for ages with me until I convinced her I wasn't taking on too much. It's become an interesting distraction and takes my mind off dealing with cancer as a disease. I'm now looking at a third line of chemo and at some point I may feel I can't continue my cancer hobby - or should that be cancer lobby. I just hope it does some good whilst I am well enough and inclined to make a fuss. Having retired I have time on my hands and it's something I can do even though energy levels are diminishing.

Let's hope out of the squabbling between Cardiff and Westminster some good comes forth. xxx Annie

[ScottishMisty]

Saw another snippet on Inside Out London last night too saying the other lady from Wales is now getting funding? So sad that it takes a TV appearance to get treatment. All the best Annie x

[Whippit in reply to ScottishMisty]

You are so right. In Wales they're on sticky ground using the IPFR to fund drugs not routinely available on the NHS because drugs such as Avastin are not a 'one-off' but are new drugs that may benefit cohorts of patients rather than an individual patient with an 'exceptional' need. It means if there's a media flurry or a solicitor's letter the Health Boards cave in.

Sadly, very sadly, few people have the means or the timeframe to get a media story going, lobby their AMs and MPs, or pay for a solicitor so it's all horrendously unfair. Having said that we're celebrating for Rosemary who has had her rejection overturned. That won't reinstate in retrospect the pension she used to pay for the drug herself, or the hard-earned funds raised by her community through their cake sales. It breaks my heart to think decent folk in Wales who've paid their NI and their taxes are having to dig deep into their own purses to help out their friends when these drugs have been made available on the NHS to other patients in Wales.

The campaign is now in the public domaine as the shoe is pinching in Westminster. Labour were unwise to hold up the NHS in Wales as an example of how the NHS will look under a UK Labour Administration. I did email them when I first saw the campaign but nobody got back to me. I'm quietly wondering how the labour administration will get out of the mess.

I was never one for politics, and I have never been one to challenge my doctor. I ingenuously believed in good faith that my oncologist would provide the drugs if they were likely to do me some good. It's not the oncologists' fault in Wales. It's the system which is rotten to the core.

Thanks for listening. Sometimes I need to get things off my chest.

xx Annie

[Solange]

Well done, yet again, Annie!! You've become a famous campaigner for the cause. So sorry you have to live in those cramped conditions!! The more I read about treatment in Wales, the more grateful I am that I live in England ......... And the more I sympathise with people living in Wales.

Love Solange

[Whippit in reply to Solange]

Oh dear! The cramped little squat!!! hahaha That's so funny as my daughter's house is a beautiful Victorian terrace in a sought-after area of London. The real joke is that the editor of the front page of the Daily Mail lives in the same road as my daughter but he just wasn't aware the patient he was writing about was the Mum of a good friend and neighbour. Isn't that hilarious. It's given our family and friends a lot to laugh about! The Daily Wail ! waaaahhhhhhh!

[chrissy88]

Well done Annie for all your hard work for the Welsh. Best wishes to you. Xxxxxxx

[Whippit in reply to chrissy88]

Thanks Chrissy. Lovely to hear from you and know you are dropping in from time-to-time. I hope you're feeling better.

I've had such a reaction from many many places, and some unexpectedly high profile people, that I know there are people in Wales and elsewhere who are pleased to see this campaign roll out.

xx love Annie

[chrissy88]

It's great to know that your superb efforts are not in vain.

Are you still on Avastin? I've just been sent home today as I have been having pains in my left side and bowel/wind problems. Prof said he didn't want to risk bowel perforation so no Avastin and having scan next week and see him week after that. My ca 125 has gradually risen from 3 to 13 which although I know is still low I'm concerned about the trend as it has always been a good indicator. very worried and gutted today could really do with a break. Best wishes. Chrissy. Xxxx