Target Ovarian Cancer have invited me to speak at the All Party Political Group for Ovarian Cancer at Westminster Palace this Wednesday. I have to prepare a four-minute pitch on the experience in Wales of applying for Bevacizumab. I shall take the story of the four women I know in South Wales who have been told they meet the eligibility criteria the Welsh Government have set out.
If you live in Wales and you can provide any information of applying for Bevacizumab - or being told it would not be available to you even though you meet the criteria please get in touch by sending me a PM. It would be good to include experiences across Wales in my presentation.
So far I have evidence from three NHS Trusts in Wales - Cardiff and the Vale, Bro Morgannwg and Aneiran Bevan. It would be great to hear stories from other Health Trusts in Wales.
The meeting starts at 4 and ends at 6. It's a privilege to be invited and to take part. Of course a pitch in Westminster doesn't directly help anyone in the devolved administrations but it may well start things moving for those of you who are already lobbying in Scotland, N Ireland and Wales.
Afterwards I may well be looking for a glass of wine to recover. Anyone know where the nearest pub is? xxx
Annie
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Thanks so much. I promise you I'm not a wonderful woman. Just an ordinary woman with an incurable cancer. My story is for the women in Wales but really having cancer isn't a devolved issue so I hope I speak for you all and serve you well.
Thanks Lynn, and thanks for the information you've given me about the facilities and research interests at the Derriford in Plymouth. It was really helpful to inform the presentation on Wednesday.
Hope to catch up with you soon when we get back down to the boat. The weekends recently have been taken up with wonderful family occasions which you'll see on Facebook.
Welcome to our friendship circle. I'm looking to hearing from you more and how you get on with your treatment in Surrey.
I'd love to be sending the message that we want and deserve the BEST treatment for Ovarian Cancer. Sadly the UK is one of the poorest developed nations in terms of survival rates. My message is limited to the demand that we get FAIR treatment for Ovarian Cancer.
I shall be addressing the Committee on the subject of Bevacizumab and how it is allocated from one region to another. First task was just learning how to pronounce the word but I will use this rather than the trade name Avastin. My area of knowledge is Wales but I'm aware from discussions with other speakers from England and Scotland that even where oncologists agree a patient fits all the eligibility criteria it is not uniformly available.
I'd be happy to post up notes from the meeting if I am permitted to do so. I'm the guest of Target Ovarian Cancer so will check with them the protocol on this.
Oh my word I shan't have the wine beforehand. I have to say how I feel about the injustice of some women having Bevacizumab and others denied it. I'd burst into tears. That or I'd jump on the table.
Thanks for the good wishes. You're all my inspiration!
So glad you've managed to get an opportunity to speak about this, Annie, as you know, it's a theme that is close to my heart I am sure you will do a great job, you always speak with great commitment and passion.
Hopefully it will be easier to speak with commitment and passion as it's not going to make a jot of difference to my treatment. I'm trying to feel emotionally detached. I shall soon have my second line of chemotherapy and that will be my final hope of having bevacizumab (Avastin). After that I shall no longer meet the criteria.
I met all the published criteria for the drug 2 years ago when I had my first line of chemotherapy but I assume my oncologist felt it would not be helpful to raise it as a possible option. There is no Cancer Drugs Fund in Wales. It would appear the administration here distributes funds and devolves responsibility for decisions to each NHS Trust. My health board has never approved an application for the funding of Bevacizumab to a woman with Ovarian Cancer. Had I lived 16 miles to the west or 10 miles to the N or the NE I would have been treated by different health boards and an application for funding may have found favour.
The Wales Government divides us arbitrarily into Sheep and Goats. Our judgement is by postcode lottery.
Thanks for listening Wendy. It makes me weep just writing this down. Hopefully by Wednesday I shall have a grip of all my faculties.
All the ways in which these drugs are funded and apportioned are SO unfair, Annie. It makes me feel angry on your behalf that the system isn't treating everyone in the same way. I am sure you'll be as articulate as ever on Wednesday.
All the best in your quest. If there's any justice ......
Could one of the PR experts here advise on this? In my early years I spent a lot of time trying to raise money and awareness of unpopular causes. Paradoxically the one time I was most successful was when I gave up reason and broke down and wept. From having been on the other side of the fence, I think that you might find a sympathetic ear at BBC Wales, Cardiff local ILR, BBC Cardiff and the regional newspaper editions. Have you met Helen Fawkes? She works for the BBC at Television Centre and found out she had incurable OC a few months ago. Although I don't know her personally I know she campaigns actively. You can contact her thru' her blog: helenfawkes.wordpress.com/ or on Twitter. I'm fairly sure she would give you a lot of help. Cx
Thanks so much for these useful leads. I'll most certainly be chasing them up in the morning, The clock is ticking but time still to trim the mainsail.
Thanks for the reference to pubs in the Westminster area. I'm not sure what happens at the end of the meeting at 6. I'd love to meet up if you're free on Wednesday evening and it wouldn't be flying in the face of any plans Target have. We could meet somewhere mutually convenient.
Thanks so much Honey. There are four women speaking on behalf of patients. It's been an interesting experience preparing for this and getting to understand the perspective of women in other parts of the UK. My MP for Cardiff West has promised to be there for part of the meeting. Let's hope he stays to hear what's going on in his patch and we'll hope for a positive outcome. xxx
I didn't realise you are registered on this site. Now I realise that you know me more than I know you. That will be resolved when we meet up tomorrow at Euston.
I've just checked Network Rail for a map of the station - networkrail.co.uk/london-eu... - I realise now the café in the Plaza where I'd suggested meeting up is Café Rouge marked 48 on the station map.
Have you written yours out? I've done mine in long-hand as 4 mins is precious little time to say a lot.
I've even nearly mastered the word, Be-vaci-zumab!!!!
Must go and collect my tickets, pack a bag, print out entry things for Westminster.
oh dear. I think I'd better make a list!!!!
See you in Café Rouge at Euston. Haven't heard back from Frances whether I can come to their office with you and travel to Westminster in the car. I think I'll just gate-crash. The whole experience is going to be a bit gung-ho anyway.
Good luck for Wednesday- it really needs airing this patchy treatment of ovarian cancer, and indeed healthcare generally in this country - I mean the UK.
Thanks for the good luck wishes Anne. I'll certainly post up a report if this is permitted. I'm the guest of Target so I'll seek their advice on disclosure. I could always post it up in our Private Facebook Group if I'm not allowed to make it public.
Thanks Madz. Might just post up and tweet my presentation. I feel even more angry now I've spent some time looking into the inequalities re access to Bevacizumab in Wales. It really is a disgrace and if I want a fair chance it means moving out of Wales, or at least moving out of Cardiff and to another area health board where Bevacizumab is available. My health board, the largest in Wales, has neer granted a single request for this drug.
Hi Annie Actually,
Best wishes for tomorrow... ( which is nearly today) love x G x
Only just seen your message so it's too late to wish you good luck. You'll now have done the Deed and I do hope all went well - you're sooooooo brave!!!
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xxx 
I am sure you will do a great job, you always speak with great commitment and passion. 
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