Hi all
Heres an update.
we are so overwhelmed by all the support we are getting,the comments people are are leaving makes us believe we are not fighting our fight on our own.
We are still waiting for responses from NHS England,NICE,Jonathan Brotherton and our MP,unfortunately all seem to be dragging their feet.
Yesterday we saw the Oncologist. We were given a cost of £9,040 every three weeks. Unbelievably this cost includes a dispensing fee charged by the hospital of £45 plus an administrative charge of £265 which is to pay a nurse to give the treatment. They will not back down on the cost and they say we must pay upfront- remember this drug is already in their pharmacy for other patients with the right type of cancer -unbelievable!
So, regrettably we are having to ask for help. We are using our savings to fund the first few treatments but this will not be sustainable for long. Following requests from all of our lovely supporters the children have set up a go fund me page. You can click on the link below and if you feel you can help in any way however small we would be eternally grateful
Thank you
Elaine & Chris