So I guess our silence is fairly obvious. We have heard nothing from NICE, not a single word.

Whilst NICE has missed the suggested date, TreatSMA were hoping that at the very least there would be some form of communication to reassure the community that negotiations are ongoing. The lack of compassion and moral duty is evident towards the community at such an anxious time and empathy seems to have gone astray.

It is hugely disappointing, but we believe that it is now NHS England that need to step up…

TreatSMA suggests we all change our tactics and start asking questions to the Chief Executive of NHS England.

If the NHS wanted to they could commission this treatment thus putting us all out of the two and half years of misery, anxiety and pure desperation this community has endured.

Though our anger towards NICE for not making an announcement is just, they are doing all that they can up until this point. Now it requires NHS England’s involvement and input to move forward. Without it this sad state of affairs may not be resolved.

Why is it taking so long? Why are the NHS not stepping in to stop families losing their children and loved ones?

The NHS is letting us down, hiding behind the processes and NICE, carefully keeping their name squeaky clean and out of the media spotlight. Shame on you.

The 17th has now gone and passed without any decision so now I urge you all to write to the Chief Executive of NHS England with pictures of you, your children and family and cc in any press contacts you have. The email is england.ce@nhs.net and the person in question is a Mr Simon Stevens

Two and a half years. How dare they have the front and nerve to string this out a second longer and standby and watch as our loved ones deteriorate and die. Enough