I have written to and emailed numerous MSPs including The First Minister & The Health Secretary. I have spoken at length with the Cystic Fibrosis Clinicians. I have written to the Health Boards for clarification of the process. None of the above are able to give any assistance due to the existing procedures. Most of the above have come back to say that there is a 'robust' process in place.
As a patient group we have prepared a submission which we are going to submit to the Scottish Medicines Consortium, early November.
As a patient group, whilst the Scottish Petition website was under construction work, we did a UK Government petition, to raise awareness, which gathered over 11,000 names in just 3 months. (Finishing September 2012) http://epetitions.direct.gov.uk/petitions/34753. At this point we were unaware that we could still have lodged a petition with the Scottish Parliament and that only one signature is required.
We have met with and have the full support of the The Cystic Fibrosis Trust. We are currently working with The Trust to share their English Kalydeco campaign on all our social media platforms. The Cystic Fibrosis Trust is very concerned about the situation in Scotland with Ivacaftor / Kalydeco and believe that Scotland will be left behind the rest of the UK.