Firstly, Thank you everyone for your support, advice, ideas and hard work. We couldn't have got this far without it being a community effort.
I am sorry this is a long update but it is an important one.
I want to be open with you all. Therefore, the following is what I feel will be best for me to research over the next few weeks in regards of the campaign and the reasons why.
I have been speaking to a lovely supporter of the campaign who also experiences Chronic Pain and she is a lawyer. She informed me about completing a Judicial Review. In many ways, this would have been a great step forward in regards to possibly getting NICE to change their mind. Sadly, there is a 3 month deadline from the date NICE published the guidelines and we needed the information that we have not been able to obtain yet as well as an independent medical review analysis. On top of that, we would need to raise the money to pay for the independent medical researcher and around 100 thousand for the legal fees for the Judicial Review. In such a short time period, it is looking very unlikely. I have contacted 'The Good Law Project' to see if they can assist us and I will do further research on this over the next few weeks.
Also, I have contacted a few Independent Medical Researcher for a quote just in case we do go ahead with the analysis of the evidence. And, that is if we obtain the evidence or we use the evidence that is only available to everyone via the NICE website. I haven't received any quotes back yet. If we did not go for Judicial Review, it would be deciding what we did with the analysis of the evidence such as via media, social media, MP's or a type of protest. Again, this would be something further I would be looking into over the next few weeks.
In addition, a further option is we don't have an independent medical researcher and we don't go for the Judicial Review. Myself and a good friend of mine and anyone who can look into literature reviews etc would look into the research ourselves (we would need a group of people) and use what we can as part of our campaign and use it via media, social media, MPs and a type of protest. (If we receive all evidence or if we just access evidence available to the public). I will research this further.
In fairness to NICE there is quite a lot of information available to the public on their website yet we don't feel it is transparent and they stated in their conversation with me which is available on previous petition links that there is other information that they do keep away from the public.
In the past month I have experienced a few verbal attacks from people within our community. I would accept it more from People who were against our campaign but from people who I am trying to help, I got to say that was not pleasant. I welcome constructive criticism but there is no need to be vile about it and I won't accept it any further.
Finally, I would like to send my apologies as I am sure most of you know this cause is very close to my heart for many reasons. Therefore, on occasion my emotions lead before my head. Nevertheless, I have put tools in place now to prevent that from happening again.
Please send me your thoughts, ideas and opinions.
I hope you are all well and Thank you for reading.
Best wishes
Claire xx