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.







Thursday, 3 September 2015

how to help refugees in Europe

I'm going to try to keep this updated as much as possible and put a link on the front page of the blog so it's easy to find, partially for my own reference. If there is anything that you think should be added, please leave it in comments and I will amend the post. Practical resources and links only, please.

To start with.

Currently Needed
Facebook umbrella group for Calais People-To-People Support. Find your local group here. I am not going to link to all the local ones, because they are, fantastically and wonderfully, springing up all over the country. The population of the Calais camp is made up of 90% men. Currently they have more than enough clothes and supplies for women and children and I believe storage space is limited.

Google map of local groups and resources for the above, which is maintained by Calais Action.

Really helpful list of groups set up to help across Europe - won't duplicate, it's extensive.

Help for refugees in Molyvos, Lesvos, Greece. Address to send physical donations of stuff to the island as well as a place to send cash.

Amazon Wishlist for mother-and-baby things needed for Syrian mothers in Hungary.

Books needed for the library at the Calais camp.

Donate to help the refugees in Greece via Shelterbox.

National Day of Action - Refugees Welcome Here. 12th September.

Raising funding for a Women and Children Centre at The Jungle, Calais. There are an increasing number of unaccompanied children arriving.

Crowdfunding page to raise funds to help refugees arriving in Greece.

The Independent's article 'Five practical ways to help refugees, starting today'.


Updated Thursday 3rd September.