A sincere thank you to everyone who has been in touch with us since Saturday, when news broke of NHS England’s decision not to fund everolimus for uncontrolled epilepsy in TSC. We appreciate this is very disappointing and frightening news and greatly value your commitment to supporting our plans to challenge and overturn this decision.
We are already generating headlines in local newspapers about NHS England’s decision. If you are keen to help and happy to speak to a local journalist, then please get in touch with firstname.lastname@example.org. We can offer support and make sure there is a quote from the TSA and our fantastic clinical adviser Dr Chris Kingswood in the article.
We are also putting together a campaign that we intend to take to Parliament. We are mindful that Parliament closes from 20th July through to 5th September so believe the best time for us to launch our #everolimusforepilepsy #NHSEnglandwrongdecision #wewontgiveup campaign will be when MPs return at the beginning of September.
Over the summer holidays we will be working to develop all our campaign materials ready for launch in September. These will include social media banners, key messages and template letters for you to write to your MP.
So please watch this space and encourage as many of your friends, family, colleagues and neighbours to join us in our fight. Together we are stronger and we can – and will – succeed.