** NHSE and NICE Ibrutinib update **

[Jm954]

Sean O'Neill, Chief Reporter from The Times who broke the story about the failure of NHSE to prescribe Ibrutinib as per the NICE Guidance will be on the Jeremy Vine show today at 1pm.

He will be talking about his CLL and the fight to get the right treatment, Ibrutinib, following his relapse after FCR treatment.

This battle is not over, there is a lot going on and more people are getting involved.

This is an unlocked post.

[Kwenda]

For those unable to listen to the program it will be available as a podcast afterwards.

See this web page link:-

bbc.co.uk/programmes/b0b3ftbl

Dick

Note also that the whole program appears to start at 12 noon according to the website

bbc.co.uk/programmes/b006wr...

D

[Jm954 Administrator in reply to Kwenda]

Thanks Kwenda, I didn't know how to do that!

[Peggy4]

Thanks. Will catch up with the pod cast.

Peggy

[Shedman]

A reasonable item -- be warned Vanessa Feltz is standing in for Jeremy -- roughly 13:10 for 20 minutes. The Times guy is a good bloke. Gets across the anxiety of W&W in CLL.. Much else.

[Jen-66]

Hi there, I heard Sean earlier. My GP told me 1 week ago that she believes I have CLL, I am now waiting for haematology appointment. My GP phoned yesterday and we discussed my ideas on possible alternative reasons for high neutrophils, she denied all my reasons. So yesterday the reality hit home, shed loads of tears, pulled myself together and found this forum. Today, me and hubby went shopping and heard Seans interview....it has helped me and hubby to discuss more, and further acceptance and ideas on how to manage, AND MOSTLY, I am not alone. Thanks for the insight.

[Jm954 Administrator in reply to Jen-66]

Jen,

you are definitely not alone. I think your GP may have told you that you have CML or Chronic Myeloid Leukaemia as you have high neutrophils. CML is not the remit of this group but it is a VERY treatable condition IF you have it with just a tablet each day.

The haematologist will do lots of blood tests and only then will anyone be able to tell you with any certainty what, if anything, is wrong.

You'll be in good hands with a Haematologist so please try not to get too upset until you know what is happening.

I wish you all the very best.

[Jm954 Administrator in reply to Jen-66]

Hi Jen, just checking in to see how you are and if you have your appointment with a Haematologist.

[Jen-66 in reply to Jm954]

Hi, not yet. Still waiting,