CLL Lobbying

[UK-Sparky]

I met my MP Iain Stewart Con MP for MK South, two weeks ago as part of my support for Lobbying. Good meeting wants to help set up a Westminster Forum to educate MPs. Was going to give my brief and correspondence to Sec of State for Health to ask for response on why funding is limited. Have passed his contact details to Frances Powrie, the Consultant lead employed by CLLSA to organise members lobbying. No replies from Thames Valley and Milton Keynes SCN (Strategic Clinical Network) and Local Healthwatch leads, Will Chase next week. Has any other UK members lobbied, what was the outcome? Could not stay until end of London conference so they may have been an update then.

[Quarry]

Thanks for lobbying - all this is good!

[carnvellan]

Morning Sparky - my MP Helen Hayes Lab Dulwich & West Norwood has written to the Sec of State and has offered a meeting. I have tried to track down my Strategic Clinical Network but it abolished itself earlier in the year! There is no replacement, which seems a strange state of affairs. I have tried finding it by going through all kinds of contacts in the NHS but there is no sign of it. The Local Healthwatch is responding but has no knowledge of it either.

This latter point worries me as the SCN is the NHS' tool to push toward better outcomes for cancer patients and others with critical illnesses. London has been criticised for its poor performance on cancer.

I have kept CLLSA informed throughout my activities but had no feedback. I'll keep chasing the illusory SCN but I don't know what to do with the offer of a meeting with my MP. I raised this from the floor at the CLLSA meeting on Friday, probably after you had left. Others had things to say too about lobbying and queried what we are lobbying for. There was a mention of creating a Parliamentary specialist group on CLL and we were told that Kate Hoey MP had offered to set it up.

I'm hoping I'll hear further from CLLSA about this as my MP has responded positively and I want to follow up.

[UK-Sparky in reply to carnvellan]

Well done carnvellan. My worry is how is this being coordinated? We will look right chumps if we wind several MPs up to take independent in cordinated action. I will email Francis Powie to find out how it is all being managed

[carnvellan]

That's great Sparky. Let me know what you find out.

[pkguk2 Partner CLL Support Association]

Hi carnvellan and Sparky. Just returned from the Patients Advocates conference in Belgrade and caught up with your posts. My MP Chris Pincher (con Tamworth) has been very supportive, including meeting us at the House of Commons and attending various meetings concerning so called 'orphan' cancers, including CLL. I am pretty sure he would be happy to be involved in any future lobbying. But, as Sparky suggests, it must be coordinated and properly organised . I would be grateful if you would please keep me in the loop in case I can offer any help or support. Thanks

[UK-Sparky in reply to pkguk2]

Will do pkguk2

[UK-Sparky in reply to pkguk2]

OK note to all who have spoken to MP, Healthwatch or local SCN . I have spoken to Whitehouse Consulting, Frances Powrie is the lead consultant. Can anyone who has spoken to MP etc please email Frances with updates and outcomes so CLLSA can make a coordinated approach to lobbying etc. please email France at [e-mail]

Thanks Comrades!

[pkguk2 Partner CLL Support Association]

Will do.