Friday, 4 September 2015

dear NHS, you know I love you

Dear NHS,

You know I love you. You've done and continue to do, really, really well by us - not just N, but all of us. You're there when we need you, you sort us out, patch us up, send us off again. You're there in the background all the time for N and we really, really appreciate it.

But I'm cross. I'm cross and I'm frustrated. By the way this Co-Enzyme Q10 thing is dragging on.

The specialists at Great Ormond Street said that there was a chance that a daily dose would help N's development, to do with her metabolic and mitochondrial issues. Three months worth and then we review and see if anything has changed. They sent us away with enough for two weeks. Since she's had that, we have noticed a slight, but definite improvement in her speech and her ability to form sounds. We are saying 'GOOD TALKING!' more than we were previously and when she talks in her sleep there are definite words. Mum. Dad. NO! That sort of thing. We've all heard her.

However, that bottle ran out more than a month ago. And we can't get any more. The local pharmacy can order it in, no problem. It's there, all ready for her. However, no-one at any of the hospitals we are involved with seems willing, or able, to sign off another prescription for her. Our GP can't do it because it's an experimental treatment and it's not on his list. It appears that London, Bristol and Taunton are all having a Mexican stand-off about who signs - and therefore who pays.

In the meantime, we are missing N's developmental window. Such a lot of brain development happens at her age. Every week you lot faff around and don't get your ducks in a line is another week that is wasted that could potentially be helping her develop cognitively or physically.

So I'm really pleading with you, lovely, lovely NHS. PLEASE talk to each other. Please sort yourselves out. Please get your ducks in a line and will *someone* just sign the bit of paper that says she can have the medicine.

In the meantime, I'm about to talk to the Pharmacy about self-funding and get some information gathered together to talk to B about, when he comes back from the market. It costs £800 a month and the GOSH people said that three months would give us a pretty good idea of whether it was going to help or not.

I know I'm clutching at straws, but this is all I have. We need to try it.

Yours gratefully, regardless, with love.


  1. So, I just phoned Miller Pharmacal in Carol Stream, Illinois and they are sending me three months supply on a three to five day delivery. The price is NOWHERE NEAR the £400 a bottle the local pharmacy told me it would be, although it's still pretty steep. I can't believe it was that easy, although it's not here yet, obviously. I am having a panic attack and need to go and lie down. The lady was so kind of helpful and gave me a huge discount. I'm crying.

  2. Great that you found it and I really hope it helps. People are nice.

  3. I'm not understanding why you can't buy it from the UK?
    It's available on Amazon.
    I buy it regularly!

    You're likely to get stung for huge import duties on drugs imported from the US.

    - Kate