Overview, Update, What’s Next & Thank you
I am receiving more and more messages from chronic pain patients in severe distress as their medications have been taken away due to the NICE chronic Pain guidelines. Even if you have signed the Change petition, I urge you all to sign the Parliament petition and Share it everywhere you can. We have a deadline of the 9th March 2022 to get one hundred thousand signatures for our cause to be debated in parliament.
https://petition.parliament.uk/petitions/596304
The Information Commissioner
Craig and I have worked very hard to complete all the information and evidence together for the Information Commissioner’s case. Our Information Commissioner’s caseworker is unable to help us with how NICE how has dealt with the information, but we are hoping they will help us access information that we are unable to currently access. Everything has been submitted and now we are currently waiting for the decision.
The Media
As some of you know I had a TV Interview last week regarding the Campaign on Notts TV. Steve at the Canary Newspaper is looking in to doing an article for us and there is a possibility that Nick at the Melton Newspaper will do another article for us. Thank you Notts TV, Canary Newspaper and Melton Newspaper. I am waiting to hear more from both Newspapers.
I paid Journalism.co.uk to help me create a professional press release. In addition, I paid Journalism.co.uk and Journolink to put the press release on the database. The databases have been of no help whatsoever. Yet, the press release has helped in obtaining the Notts TV interview and the possibility of the two newspapers. Yet, I have contacted numerous media outlets with the press release such as This Morning, Good Morning Britain, Loose Women, BBC News, Channel 4 News, The Guardian, Channel 5 News, BBC Radio, and LBC radio, etc but they have all sadly ignored my correspondences.
In addition, I have contacted Miranda Heart's agent. Miranda is a comedy genius but as well she is a big supporter of those with chronic illness. I have asked if there is any possibility Miranda would share the campaign on her social media pages and I asked what the fee would be for doing this. I am waiting to hear back.
The Committee
I would like to thank Siva and Tor for their continued help since they joined the committee. We created a proposal last month for Dr Rajesh Munglani to become our medical advisor for the campaign. The doctor is strongly opposed to the New NICE guidelines. However, the doctor has not responded to the proposal. The next committee meeting is tonight.
Campaign Video
Sasha, Niki and I have worked hard on a campaign video. The aim of the video is to raise awareness and hopefully gain more signatures. Robin from Videos made by Robin is kindly creating this video for us for free.
Special Thank you
Thank you Sasha (@potsiepanda) – Wonderful Chronic Illness Advocate. Supporting the campaign throughout, sharing the campaign and creating the campaign video.
Thank you Niki (@the_lonely_spoonie) – Fantastic Chronic illness Advocate. Supporting the campaign throughout, sharing the campaign and creating the campaign video.
Thank you Craig (craig.elmer.9) – Amazing Nurse and Singer. Supporting the campaign throughout and worked very hard for the Information Commissioner’s case and sharing the campaign.
Thank you Jackie (jacklowdejo) – Lovely person who has shared the campaign daily on her social media page.
Thank you Leanne – (l3ann3r0bs0n19) Fabulous Chronic Illness Advocate and Small business owner of gorgeous cosmetics. Supporting and Sharing the campaign on a regular basis.
Thank you Dolly (Dollyroche) Gorgeous person who creates beautiful pieces of clothing. Supporting and Sharing the campaign on a regular basis.
Lots More ‘Thank You’ in the next updates.