Welsh Plea fo Fair Access to Cancer Drugs

[Whippit]

People in Wales have been campaigning for years for fair access to new cancer drugs. You might find it difficult to comprehend but these drugs have only been available to a minority of patients for years via a cruel postcode lottery. Patients in Wales are more than 7 times less likely to receive drugs than patients in England. The Government insist there is research to prove a Drugs Fund is unethical and medically divisive and that a Cancer Drugs Fund is unpopular with patients.

I thought some of you who have benefitted from drugs in England and Scotland might have a view on this. Today Sky News is following the story in Wales. A petition, signed by 100,000 people, for fair access to drugs in Wales will be handed over to the Welsh Assembly at 1 p.m. this afternoon by a delegation of desperate people.

If you have a moment please watch the Sky Clip:

news.sky.com/video/1366992/....

If you have a view you can tweet or email Sky News to have your say from wherever you live in the UK:

Tweet @SkyNews, email [e-mail]

[kazrazmataz]

I am still waiting for the CNS to ring me back re Avastin but I will tweet skynews later Today as I believe ACTION is more likely if cancer patients collaborate together in what is an unacceptable postcode lottery.

Well done on what you have done so far to help bring this unacceptable situation to the fore!

On another subject I am thinking of campaigning to improve early diagnosis. I know they are looking into a screening process but whatever the outcome of this more needs to be done. Change is brought about by people like us collaborating together (stole that quote from Prof Brian Cox on the last night's Human Universe talking about working towards a global sustainable energy solution to save planet Earth).

Have a nice day Annie, take care x

[Whippit in reply to kazrazmataz]

Thanks for your support and for your thoughtful comments. Yes, the only way to lobby for change is to stand shoulder to shoulder. Target Ovarian Cancer have recommendations in their Pathfinder Study to improve early diagnosis of ovarian Cancer. It's worth looking at this on their website:

targetovariancancer.org.uk/...

From recollection they have called for national cancer awareness-raising campaigns - and one is already in place in NW England, and GP Training - available online on their website. It's worth giving them a shout to discuss a campaign so it fits it with their work to date.

I'd back you up! xxx love Annie

[kazrazmataz in reply to Whippit]

Thanks Annie, I've been looking at all sorts, I have already emailed Target. Also been reading their website (For Health professionals). Been looking at the Cancer Research stats as OC is just one of the cancers with poor early diagnosis. Cancer Research say it costs the NHS 3 times as much to treat late stage (not to mention the real cost to patients hence why I want to get involved). One statistic so far is staggeringly - there is up to a five-fold variation in early diagnosis between some health regions, the postcode lottery goes on and on). Will keep you posted. One thing I am not keen on at the moment though is publicity, I think this because I will get my scan soon to see how my first line treatment went ie whether or not I get any remission and I am feeling decidedly jittery so dont think I could cope with any limelight at present but that might change after I get my results. I am quite tenacious when I feel strongly about something and I would like to do my bit to improve the situation for women if I can. I will keep you posted x

[Whippit in reply to kazrazmataz]

I don't know how I missed your comment above, so apologies for not responding sooner.

I really hope you get good results from your scan. It's such a worrying time at the end - almost like an exam - but really there's nothing we can do to improve the outcome.

Did you know the next APPG for which Target are the secretariat, will focus on early diagnosis. The meeting is on Wednesday 3 December at Westminster Palace. If you want to go along as an observer you just need to get in touch with Mike Feakes - email [e-mail]. The APPG starts at 4:30 p.m. and ends about an hour and a half later. There's a few of us going along, and Sue, who posts on this site, is presenting the patient perspective.

It would be amazing to meet up if you do decide to go.

If you're interested in our campaign it's on a Facebook Group: facebook.com/groups/OneVoic... Three of us started it up so it's not so scary putting our heads above the parapet when we're working together.

xx Annie

[TrishLey]

I wish you all the best of luck as we are finding out in Ireland, numbers make a difference. Wales deserves better as does every citizen of the UK who are being discriminated against due to region or postcode.

- Trish

[kazrazmataz in reply to TrishLey]

Hi Trish, I fully agree we all deserve the best treatment available.

Annie - Specialist nurse phoned said they do prescribe Avastin at Glos/Cheltenham/Worcester hospitals which is where I am treated so at least I know that before I speak to the consultant. I asked about the bowel perforation risk and she said was quite dismissive of this saying it was a very small risk.

[Whippit in reply to kazrazmataz]

I'm so glad your centre prescribes Avastin. It's a bit scary when advice is so contradictory about Avastin and bowel involvement. Perhaps the consultants base their advice on exactly where the involvement is and how significant and that's why we're getting different opinions from them. xx Annie

[thesilent1]

Hi Annie, just watched the Sky News clip. Great piece. Think I will tweet and let them know we do not have this in NI either. Well done. Ann xo

[Whippit in reply to thesilent1]

Well done Ann. I'm so glad you tweeted because it was the number of tweets and emails to Sky News that kept our story in the top 2 priority stories of the day.

You are absolutely right about it being a UK-wide issue. The woman who led the Petition signed by nearly 100,000 Welsh people is hoping to take it to David Cameron but he quite rightly says this is a Welsh matter.

Wouldn't it be an idea to have a delegation to Downing Street, or at least to Jeremy Hunt on the part of all four areas of the United Kingdom to say that patients expect a just and equitable service whichever country they inhabit.

xx

[Anne-2]

Hi Annie,

Well done, this contradictory approach to health in the UK must be addressed and you are making d----d sure no one is unaware of it.

Hope you are keeping well,

Love and prayers

Anne xx

[Whippit in reply to Anne-2]

hahaha Anne. It will probably kill me! lol

I feel compelled to press on with the campaign for fair access to cancer drugs in Wales. All democratic routes of representation have been exhausted so campaigners have joined forces and have turned to the media. Local (Welsh) media have not persuaded the Government to do anything about the situation so we are stepping up the campaign to share it with UK media on prime-time TV. We campaign for the sake of all those patients who've had requests for treatments rejected and for whom acquiring an address in England is just too much to cope with. I can't begin to tell you what it feels like to be let down and put down by a system such as the NHS in which you placed your faith and your life.

The story is not just the contradictory approach to health across the UK due to diverging government policies, but it is also important to expose the contradictory approach to healthcare within Wales where patients are divided into sheep and goats by an unfair and opaque system of allocating cancer drugs. Nobody here, including our clinicians, know which drugs are available and under what circumstances.

We're not complaining about the professionalism of staff involved in delivering health services in Wales. They are wonderful and sometimes have to jump through hoops to get their patients basic treatments that are available elsewhere in the UK.

I laughed for a moment at the Minister of Health for Wales when he told Sky TV, and the world at large, that patients in Wales don't want a Cancer Drugs fund. There, outside the glass assembly building was a huge box of 98,280 signatures, all demanding a drugs fund!!!! It was an extraordinary number of signatures and the biggest petition ever received by the National Assembly of Wales.

My mirth was brief. Tears and despair followed swiftly along with others in the delegation. I really can't understand why the Welsh Government would not want to treat its people fairly and see them thrive. Is it really because a Cancer Drugs Fund is perceived as an 'English' idea so Wales must go in another direction? It can't be that irresponsible. I refute it's a matter of funding because Wales has devolved power for health so it can assign whatever is needed to ensure we have a decent NHS. It is our right surely? The Welsh invented it and we gave it to the rest of you. lol

Sometimes I have to laugh or I'd cry.

xx Annie