NICE work

It’s getting close to being 12 months since Rhys had his surgery in St Louis and in the coming weeks I’ll write a post about how he’s doing.

In the run up to his op lots of people asked me ‘Why isn’t SDR available on the NHS?’. There was a heap of reasons and I wrote about it here in a post from September.

At that stage the issue had been raised in Prime Ministers Questions with David Cameron being asked directly about the availability of SDR.

That all came about due to the persistence of a group of parents that make up Support4SDR UK. Since then they’ve continued pursuing government ministers, writing letters, picking apart illogical arguments put in their path until they met today with Norman Lamb MP, Minister of State for Care and Support.

Incredibly, he’s been persuaded to take action on several fronts.

Firstly, Mr Lamb will write to NHS England, NICE and Andrew Dillon (Head of NICE) to ask them to interpret the guidelines to make it clearer that SDR is a viable option
 as a treatment.

He’ll also ensure that NICE use the available long term evidence from St Louis in their deliberations
.

He’ll write a request to NHS England to fund operations without delay
.

Finally, they will come back to Support4SDR to advise what is happening with the updated guidelines and the commissioning process

It’s an amazing result and it feels as though the availability of SDR on the NHS in England has just got an awful lot closer. It’s also a tribute to the sheer persistence of a small group of dedicated parents determined to create a change.