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Birdshot Society to Lobby Parliament for both Birdshot & PIC

PostPosted: Sun Mar 27, 2016 6:06 pm
by DavePIC
A message for all PIC patients in the UK.

Our friends at the Birdshot Uveitis society are making an attempt to lobby Government for access to funds for treatment. Their condition, Birdshot Chorioretinopathy has roughly similar symptoms and underlying effects to PIC.

One of the problems facing both sets of patients is that due to the fact that both these conditions are classed as ‘rare diseases’, there exists insufficient concrete evidence that certain drugs will work for these conditions and subsequently result in denial of funds. Often, this follows physicians actually recommending these drugs for treatment. This leaves the patient with two options: get treatment privately or potentially face lost vision.

Clearly, this situation on top of the devastation that comes with losing eyesight, is a very unpleasant situation for many to face.

Therefore, with this in mind, could I ask all UK PIC patients to post the name of their local MP? The intention is to put pressure on as many MP’s as possible to make a case to Government to ensure funding is available. The more numbers, the more chance of success they have.

I would stress it is only the name of the MP that’s required – your details will not be used or passed on in any form.

Thank you in advance.
Regards,
Dave.

Re: Birdshot Society to Lobby Parliament for both Birdshot & PIC

PostPosted: Sun Mar 27, 2016 8:28 pm
by SUEUK
Hi Dave,


My M.P. is Nick Boles (con) is that all you need?

Re: Birdshot Society to Lobby Parliament for both Birdshot & PIC

PostPosted: Mon Mar 28, 2016 11:50 am
by DavePIC
Thanks Sue - that's it!

Dave.

Re: Birdshot Society to Lobby Parliament for both Birdshot & PIC

PostPosted: Mon Apr 18, 2016 2:34 pm
by oxon2012
Hi Dave

Hope everyone is well?

Sorry for the delay only just saw this. My MP is Victoria Prentis ( conservative north Oxfordshire)

Cheers
Jason

Re: Birdshot Society to Lobby Parliament for both Birdshot & PIC

PostPosted: Mon Apr 18, 2016 9:34 pm
by DavePIC
Thanks Jason,

Good to hear from you.

Dave.