Steve Brine

Peter’s response to Kevin Foster

As I anticipated on camera when we were being filmed by Channel 4 in December, the response we received from Steve Brine was EXACTLY the opening gambit you’d expect a Minister’s private secretary to adopt when hoping to kick such an annoying can as far down the road as possible! But, as you heroically committed in the same interview, now is the time to keep pushing the issue.

We all know that currently funding decisions on items such as Cough Assist and Tracheostomies are made locally by CCGs. We also all know that because these items are not mentioned in the NICE guidelines, there is currently no obligation on CCGs to fund them, even if a local health practitioner requests them. But none of that well-established (and, in general, perfectly reasonable) government policy can side-step the extraordinary specifics of this particular situation.

The fact remains that if I lived where I grew up in Wimbledon (hardly the poorest region of the country), I would probably be dead by the end of this year. Instead, because I live in wonderful Torbay, in October our excellent NHS hospital will give me a laryngectomy that may see me THRIVE for decades.

It goes without saying that in general it is inappropriate for government ministers to attempt to intervene on local healthcare funding issues. But that is not what we are suggesting. This is a very-clear and increasingly important issue of unintended Life or Death that should be decided firstly at National level – and then delegated. At its heart, only if Cough Assist and Tracheostomies are included in the NICE guidelines can this be safely left to overworked and financially-stretched local providers. So, I guess, a reassessment of the NICE guidelines has to be our ultimate goal.

However, there’s the rub. To change NICE guidelines requires clinical cost-benefit analysis. But, latest research, to which I am privy in my role as a Trustee of the MND Association, suggests that less than 1% of patients in the UK with MND get a tracheostomy (compared with 35%, for example, in Japan). So there is a dearth of UK evidence. And Japanese costs-benefits are different because their healthcare system is different. In addition, as we discussed, Hi-Tech is exponentially advancing so fast that any data on Quality of Life once someone is locked-in by MND but surviving on a ventilator is almost immediately out of date.

NICE will eventually catch up – and we certainly should encourage that. But we cannot wait until then. People with the courage to live, and to remain productive members of society, are being forced to die (for cost reasons) while others in their region with, say, advanced dementia are automatically being fully-cared for. Whereas I, only because I am lucky enough to live in Torbay, get a chance to THRIVE. I simply can’t see how this is fair. Nor do I believe it would pass the Public’s test of fairness either.

In the meantime, let’s at least move things forward. What do you think would be the best way to proceed? When last we met, you suggested that at some stage in proceedings you would like to get me in front of the appropriate Minister. Of course, in the current febrile atmosphere, it would be nice to meet a Minister that was likely to survive in their job for long enough to be useful!

What do you suggest?