In July I wrote to the Prime Minister about my constituent Jake Ogborne’s case. I’ve finally received a one-page response which concludes ‘I wish Jake and his family well and hope that his condition improves.’
This is a really crass response. Jake suffers from Spinal Muscular Atrophy (Type 3), and our campaign is trying to get him access to the drug Spinraza on the NHS. There’s no way his condition can improve without access to Spinraza, and he can only get Spinraza if someone does intervene on his behalf.
Two previous Prime Ministers, the Speaker, and the Secretary of State for Health have all responded really positively to Jake’s case and have expressed their sympathy. Without access to treatment, though, these warm words and well-wishes mean nothing. I’m angry this letter was signed off when there is no chance of Jake’s conditioning improving without political action on Jake’s behalf.
You can help Jake’s campaign by signing this petition: https://petition.parliament.uk/petitions/552816.