Were you one of the 167,000 who signed Change.Org’s petition to allow Sasha a 2nd Stem Cell Transplant?

Well, if you were, you might have received an email from a jubilant Amy Collins, the organiser, to say “am so so pleased to announce that today NHS England has changed their decision and with immediate effect, will be giving funding for 2nd Stem Cell Transplants to patients that have relapsed after a year or more.

 

Later on came news that Sasha, the patient who had sparked this petition off, might still be having this treatment done privately, but thanks to the petition there seems to be enough money raised to cover this. And now the 15 people per year who might need such treatment won’t have it refused.

As Amy wrote, “I cannot begin to tell you how I am feeling right now as I am in complete and utter shock! It is such amazing news and I would like to thank each and everyone of you for helping us fight, for signing and for sharing this petition and backing us all the way, we could not have done any of this without you.

Thank you all so much for sticking by us it really has been a rollercoaster of a ride, but what an amazing result! Now all we have to do is have our Sasha back to full health and we really will have her Happy Ever After!!!

We really have made a difference to all those people out there who would be facing this right now or in the future.”

So YOUR signing a petition really can get results.  PEOPLE POWER AT ITS BEST!!! AMAZING!!!! XXX

NHS England in a muddle

Thinking that this story might make a lovely positive one for the NHS, I contact NHS England’s press office.  Explain that I would like the press release, and they promise to send it.  Now, their press office is full of highly-paid staff (natch), but heaven knows where they found them.  Instead of a normal press release, over comes a massive document pages long. Any half-way competent press officer knows that a press release is written on ONE page only, and contains a precis of relevant details, etc.

Oh – and I had asked for a logo image in JPEG – a perfectly normal request – but was told they didn’t have this.

No wonder poor Sasha had so much trouble getting treatment.  Thank heavens she has enough funding to enable her to by-pass red tape and go privately.

Incidentally if anyone wants to see the ruling in full, in case it might be of use if they have funding refused, it’s on

 

https://www.england.nhs.uk/wp-content/uploads/2017/02/clin-comms-policy-16068p.pdf

 

 

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