When Everolimus was licensed for the treatment of TSC none of us imagined that years later we would still be fighting for access. Over the past 2 years, the TSA has been supporting the development of a service specification and prescribing policy in the face of massive and unnecessary bureaucratic delays. In the meantime, TSC patients, even those in the most critical need, have been denied access. Over the past months, with no progress in sight the TSA, with the help and support of its members, has been vigorously campaigning on this issue. Together we have raised this issue with MPs, the Prime Minister, and Health Ministers as well as with members of the House of Lords.
The TSA has been grateful for the support of Leeds North MP Greg Mulholland who has repeatedly raised this matter in Parliament and with Ministers, including David Cameron. Mulholland has also lead protests outside the Houses of Parliament and in Whitehall. Earlier this month Mr Mulholland tabled an Early Day Motion (EDM) calling upon the Health Secretary to take action. The EDM has been signed by more than 60 of his fellow MPs – many of who had been alerted to the issue by members and supporters of the TSA.
Yesterday our Chief Executive Jayne Spink, joined Mr Mulholland in a meeting with Minister George Freeman to push for a resolution to this unacceptable situation. Also at the meeting were representatives of Duchene Muscular Dystrophy charities and the MPS Society.
It is clear that NHS England has failed to follow its own policies (introduced in September 2013) providing for the rapid development of interim funding policies for drugs going through the NHS England Process for patients in urgent need. Under the NHS England Framework Agreement, Ministers do have the power to intervene if NHS England is “significantly failing its duties and functions” and can issue directions. The purpose of the meeting was to highlight the failures and to ask the Minister to invoke his powers to intervene as a matter of urgency.
Commenting after the meeting, Mulholland said: “We have ministers saying the decision is not down to them, but rather NHS England. But NHS England are repeatedly failing to reply to letters or even turn up to meetings despite Anthony Prudhoe telling me they will attend, and ministers are wrongly claim they are unable to intervene when their power to do so is set out clearly in black and white. The whole affair is a total shambles, especially given we are here because NHS England’s own process was discriminatory and they were forced to scrap it. I am disgusted at the NHS England cowards for failing to be answerable for their own mess, and for completely letting down the 180 people who desperately need treatment. Ministers absolutely must intervene, and with people’s lives at stake, they must do so now.”
Jayne Spink said: “That people in critical need are denied access to medicine in clear contradiction to NHS England’s own polices is a complete and utter disgrace. Now that Mr Freeman has been made fully aware of the extent of NHS England’s failures, I hope that he will take a firm grip of this situation. There are just a few days before the election for Mr Freeman to step up and do what is right. ”
We hope to hear news from the Minister’s office before Parliament dissolves for the election on Monday.
