I was reading the paper today about the women (stephania wolf and sam wolf RIP) who died in Hertfordshire and there's a lot of speculation going on into how they died. But one of them is actually niggling at me, that the mum died, then her disabled daughter died of malnutrition because she couldn't get help.

I'm sure there's a lot of people out there in the same boat, that have no help what so ever, so what are we going to do, my daughters don't have a clue and they will be with us until one of us passes away or we become to ill to look after them ourselves. But what if it comes out of the blue, what can we do to protect our children as adults in years to come from this sort of thing??

I'm sorry to put this on here if it upsets people.

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Stacy
Mother to Terry 11 MLD + ADHD, Nicole 9 Cri-du-chat Syndrome ADHD Asthma GDD Coarctation, Jessica 4 Cri-Du-Chat Syndrome GDD Reflux

i know its really sad,but i does make you think about it.

hi i found it really sad as well and it does make you think, ive talked to my daughter and she said she would have her brother live with her, but shes still young and doesnt realise the impact on her life he would have, there should be more support around even a basic phone call to check all is well once or twice a week, but sadly we live in a world where we are just left to get on with it x

Hi I totally understand where you are coming from!!! Ihave said to my other children i would liketo think they would take my son in should anything happen to us even to the point of suggesting that they take turns of like 2 yrs each sad i know but as you say there is nothing out there!! x

what exactly is it that is concerning you about it? (sorry...havent seen the stories ) is what would happen if you became suddenly ill? or what would happen if you suddenly passed? because crossroads run an emergency scheme in birmingham (i am not sure if it is something they offer nationally but i will check after posting this ). the idea of the scheme is that if for some reason you are taken ill or your partner or whatever, an emergency happens....then they can dispatch a carer to look after your disabled child (and siblings if they are there too). They will stay for i think its 48hrs on a week day or upto 72hours on a weekend to basically enable you to sort out alternative care. they come out to your home when you first sign up and go through the type of care that is needed and discuss whether they would be able to assist you.

It is my understanding they dont cover everything such as very complex medical needs!? but it maybe worth a look at for any that are interested. their contact info is on http://www.crossroads.org.uk

is that the sort of thing people where thinking or am i waaaaayyy off the mark!?

xx