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Here are some suggested organisations that offer expert advice on SN.

SN mums - please help.......

(5 Posts)
MandM Fri 29-Apr-05 11:51:21

There are a family in our local area that have been in the press quite a bit recently. They lost their 2 year old SN dd last year. She had contracted meningitis as a baby and had been left deaf, blind, oxygen dependent and unable to walk or talk. Sadly she caught a chest infection in December and died as a result.
Despite their tragic loss they have, since her death been campaigning tirelessly for better support and services for SN children and their families, not just in our local area but nationally, as they felt so let down over the help and care they received for their dd. They really are an inspirational couple, who are determined to gain better provision for others who are in a similar situation or who will find themselves in the future. They had had a sensory room installed in their home for their dd and have now made it available to any families in the area who could benefit from it. The father is also writing a book about their dd's life, which will benefit various charities.
Anyway, to get to the point, the father is mounting a campaign which he is going to present to a cabinet minister in Westminster and is asking for any parents of SN children who have struggled to get or have had problems with therapy, treatment, care and support for their children and theirselves to put it in writing to him to help him build up his 'portfolio' of evidence. He said in the local paper this week "the pressure of caring for a severely disabled child nearly tore our family apart. And there are so many parents struggling along out there, and there are children who are not receiving essential care - something must be done.....I am committed to making sure their voices are heard."
I have got his postal address and thought that if some of you would like to contribute, you could either CAT me your letters or I could CAT you my postal address.

Also, as you all seem to be such Caramac fans - see yesterday's thread! - there is a guaranteed Caramac on it's way to every one of you lovely ladies that responds

coppertop Fri 29-Apr-05 13:28:39

We've been pretty lucky so far with services etc so I don't suppose I'd be much use to the campaign but here's a Caramac-filled BUMP!

coppertop Fri 29-Apr-05 15:41:45

bump!

heartinthecountry Fri 29-Apr-05 17:49:04

MandM - it might be worth them contacting the Henry Spink foundation (henryspink.org I think)Henrietta Spink was in the news last year about their fight for services for their 2 sons and I believe is trying to put together a similar campaign. There is a seperate site at Henriettasdream.org.uk (again, I think)asking for stories of difficulties in securing services.

Worth looking at the Henry Spink site anyway as they have loads of info about therapies.

JakB Fri 29-Apr-05 17:49:06

MandM, we've actually accessed help for our DD relatively easily, but only because other families have fought hard beforehand to get ABA funding. But I'm bumping this... The family sound brilliant and it's so sad that they lost their DD

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