CLLSA Campaign on CDF delisting decisions

Hello Everyone.

We are still waiting to hear about the outcome of our appeal to oppose the delisting of Bendamustine and Ibrutinib from NCDF. The decision will be taken behind closed doors and will be informed close to the delisting date of 4 November.

Meanwhile we have written directly to Jeremy Hunt, Secretary of State for Health and are waiting for a response.

A very big thank you to everyone who has written to their MP. BUT WE REALLY NEED MORE OF YOU TO DO THIS.

Numbers so far are:

50 letters sent to 50 different MPs.

Responses are only just starting to trickle in and I will update you on this and the quality of the response over time.

Friends, carers, family members are also writing but are not updating me directly if they are not members of the CLLSA.

The most powerful message comes from the patient themselves, however all letters will increase awareness of our issues and should be welcomed and encouraged.

As a rule of thumb we need 150 letters to be sent to MPs by patients, out of which we would hope that around 50 will write to Jeremy Hunt as we have requested. However you may find that this will be dealt with by one of his Ministers who has responsibility for the CDF.

The timing of this Campaign is now critical as the meeting to be held to review the appeals will take place shortly.

SO PLEASE EVERYONE, SEND THOSE LETTERS TO YOUR MP AS SOON AS POSSIBLE - DON'T DELAY, IT COULD BE LIFE OR DEATH TO SOME RELAPSED PATIENTS.

Very best wishes

Tricia

9 Replies

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  • Thank you for updating us Tricia.

    For those looking; you can access the letter for you to personalise and send to your MP here cllsupport.org.uk/article/l...

    You can use this search tool to find your MP and contact details here parliament.uk/mps-lords-and...

    Thanks for supporting us, every voice is important

    Nick

  • Any way for those of us in other countries to support this effort?

  • What a generous response, thanks pkenn. In the UK you have to reside in the MPs constituency in order for him to represent your views. Ideally you would be a CLL patient too.

    But if you had any CLL friends in the UK who hadn't already written to their MP then perhaps they could be encouraged to do so.

    Thank you for your support.

    Tricia

  • Thanks for update. I have not yet had a reply. What is a reasonable 'reply time', as I am very happy to write again?!

  • Most MPs will aim to reply within 10 days, but their contact page usually states their policy and priorities quite clearly.

    Best wishes

    Tricia

  • I've e-mailed my letter to my MP in Wiltshire - the automated reply said to expect a response in up to 10 days, but to re-send it headed 'Urgent' in the subject field if there was a time element to the issue. So that's what I did! Get typing everyone ...

  • Hi. I have just typed up the letter and will post to our local MP first thing in the morning.

    Is there anyone else I can send it to? David Cameron....?

    Can we ask others who do not have CLL to write too?

    Fran ☺️

  • Hello Fran57. MPs can only act in the interests of their constituents so unless you are in David Cameron's constituency then the answer is no. Others can write to your MP too but the patient carries the most weight. The best use of your time would be to wait for your MP to reply and then follow it up if you don't get the response that we need. You could also make an appointment to see your MP at their local constituency surgery. I will be seeing mine shortly so that he has a deeper understanding of the issues before he writes to the Secretary of State or Minister for Life Sciences.

    Best of luck and thank you

    Tricia

  • Thanks Tricia. I certainly will. I'll let you know if/when we get a response.

    Fran 😉

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