We have been told that the Clinical Priorities Advisory Group have now met and have made their recommendations to NHS England – although as yet we do not know what that decision is.

We have been given to understand that NHS England will share this decision with us in early December. We will share their decision with you as soon as we know it ourselves.

In the meantime we wanted to share with you an update on all your hard work, and thank you for it, because without your fantastic support and input we could not have got to where we are now.

We launched our Ready Steady Write campaign on 8 August 2018

Our campaign email reached 1,633 people

Our campaign has been shared extensively across Facebook, Twitter and Instagram

Our petition on change.org has more than 6,700 signatures

36 people have told us that they have written to their MPs about our campaign

TSA Chief Executive Louise Fish has written to 102 MPs

TSA Chief Executive Louise Fish has met with Labour health spokesperson Julie Cooper MP and Liberal Democrat health spokesperson Norman Lamb MP

Seven MPs have told us that they have written to NHS England Simon Stevens or Health Minister Lord O’Shaugnessy asking them to make sure evidence from patients and their families is heard

Two MPs have tabled Parliamentary Questions (PQs) about everolimus for epilepsy: Ben Bradshaw MP and Rosie Cooper MP

We have contacted the Secretary of State for Health Matt Hancock, Health Minister Lord O’Shaugnessy, and John Stewart, Director for Specialised Services at NHS England

The campaign has been covered on TV by Channel 5 news, BBC South East News, BBC South, on radio on BBC Radio York, BBC Radio Sheffield and BBC Three Counties Radio, and, eight regional newspapers: The York Press, Hull Daily Mail, Wigan Today, The Comet, The Scarborough News, The Wakefield Express, The Hemsworth and South Elmsall Express and The Oxford Mail.