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Responses to NICE Appraisal - note Phillip Hollobone MP will raise his concerns in Parliament next week

This is a message from Bhiru's husband, Jed, again. I just wanted to keep you all updated as to what I've been doing regarding the NICE appraisal.

Firstly, I met with Vince Cable (my local MP) just over a week ago. He's agreed to help, and is in the process of getting in touch with NICE and the Department of Health. He also said he may be able to get me in contact with some of his media contacts (which, after speaking to Jane Apperley last week, I am pushing). If this happens (we can hope!), Jane has agreed to have her details passed on. Would you mind if I gave them your details Sandy?

Secondly, on Friday I wrote (both email and post) to Gordon Brown, David Cameron, Nick Clegg, Andy Burnham and the other Ministers for Health.

Thirdly, I have written a template letter to MPs and sent this out to everybody I know on Facebook (about 200 people) and many others. A lot have sent this out to their MPs (by email, post or both). Some have personalised it. Many have also forwarded it onto their friends, with the same instructions. In fact, even my neighbour has gone to the effort to modify my template and send it to his (enormous) family and friends, spread all over the country. Hundreds of copies of this letter could reach MPs far and wide over the country.

Some have already received replies stating that the MPs will get in touch with NICE and the Department of Health.
In fact, a girl I went to school with is married to a local Borough and County Councillor for Kettering and Northamptonshire. He and his MP (Phillip Hollobone)have written to the Health Ministers, NICE and London Social Services and Health Team. Importantly Phillip Hollobone MP is also going to raise his concerns in Parliment at next week's meeting to raise awareness of this situation.

Fourthly, I have asked everybody I know with any contacts in the media to pass on my message. Some have done so. Some will do so this week. I'm awaiting replies.

Today I have also sent an email regarding the NICE ruling and my personal predicament to all of the nationals. I'll begin phoning the Newsdesks, and any contacts I receive, next week.

Myself and my family will also be commenting on the document on NICE's website next week.

Not only are we fighting this, but many more are too.

Could I just say, this website has been of great help to me at times (although I've only been reading it, and never contributed). Even now it's so encouraging to see how hard so many on this forum are working to fight this ruling.

Jed

Dear Joel

This all sounds absolutely fantastic!

Is there any chance, please, that you could paste your template letter up on this website as a guide for those of use who have not yet contacted their MPs?

Thank you very much in advance!

Janet

Jed

Vince Cable is also my MP. I haven't met him yet but sent him a fairly long letter last week - which has been acknowledged but not responded to, yet. Glad to see he has agreed to help. I will try to visit him next week. Obviously your meeting will have primed him so hopefully I will get an update on his thoughts and actions.

Richard

Wow! Well done Jed!!
Vickie

dear Jed...... well done and thanks for offering to share your template for the letter to MP's.
If you send it to me I will upload it on to this site under the Newswire section.

I would be very willing for my contact details to be shared with any interested media....Sandy Craine, cmlsupportgroup@gmail.com
There are plans to try to encourage a national media response this week and hopefully this will happen. However, it is sometimes hit and miss with media on whether they consider stories like ours to be 'old news' (given that this went public 2 weeks ago and the publicity already given last week to two other cancer drugs -liver cancer and colon cancer- in receipt of negative NICE appraisals) or where they would consider this story as added value news... added value in NICE bashing. We shall see.

I am meeting with Leukaemia Research Fund, Leukaemia Care and Macmillan tomorrow to discuss how best to combine our responses as official consultees to the NICE ACD.

Once again, keep on pushing,

Sandy

Hi Jed

What a fantastic effort;if the rest of us can take a leaf out of your book, we should make ourselves heard.

So far, I have posted my response on the NICE website, written to my MP Douglas Hogg, signed the No10 Petition and passed it on to all my friends, family and colleagues.

Keep us updated, with your responses.

Best regards
Chris

Brilliant work Jed - all helps. Not sure how many people listen but I did a piece on Radio Kent at the weekend which went out 3 times over the course of Sunday and a few of the journalists signed up to the petition.
K

Hi All,

I recently asked all my friends and family to sign the petition and write to their MPs. This morning a friend of mine got in touch to say that he had seen a link to the petition on a stockbroker forum that he uses. Somewhat random(!) but as we all set communication chains in motion it seems that awareness is rising.

We've also heard back from friends of ours spread across the UK that they are actively contacting their local MPs who in turn are contacting Andy Burnham. We've even heard back from people that we don't know because they are a friend of a friend who received our forwarded email.

I just wanted to share this - hearing about it has lifted our spirits (Jed did a little dance around the living room!) and I hope it does the same for you.

All the best, and stay strong

Bhiru

Bhiru&Jed

A fantastic effort, thanks again!

All the best
Chris