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Here are some suggested organisations that offer expert advice on special needs.

SN children

Clair House Hospice

14 replies

dizzy34 · 27/02/2006 17:58

Hi everyone,

Does anyone on here use claire house childrens hospice? I ask cos we have been asked if we would like to use it with ds. He has a life shortening/life threatening and terminal illness apparently.
We dont want respite cos our weekends with him are precious and i dont want to leave him with anyone else at the moment, but with claire house we could all go and stay there and use their hydrotherapy pool, hot tub they have relaxation therapies. our 'bedroom' would be right above harrys, and it would mean that we could sleep through the night but still be near him. The other kids could also come with us and all the food etc is included. Have a look at www.claire-house.org.uk/ and tell me what you think.

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Saker · 27/02/2006 18:40

I have no experience but it looks very good to me. And as you can all go together, if you didn't like it you could all leave again - it's not like you're sending him away to somewhere that you don't know. Is there a particular reason you are hesitating?

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buzylizy · 27/02/2006 19:13

sorry can't help but the place looks lovely and If it gives you a rest but keeps you all together might be worth a try.
my friend used a hospice in guildford and found it really helped.

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edodgy · 27/02/2006 19:17

Although i have no personal experience I have heard only good things about the Claire house organisation.

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jenk1 · 27/02/2006 19:18

dizzy, i have had a look at th link and it looks lovely. Smile

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anniebear · 27/02/2006 21:27

Dizzy

we just live up the road from there

We have not used it ourselves but know a few families from School who have, it's so lovely

Do go and have a look

were do you live?

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dizzy34 · 28/02/2006 08:14

Hi everyone, thanks for your replies.

Saker, i suppose i am hesitating because it feels a bit like we will be admitting that he is 'terminally ill'. A frinds little one died there over xmas as well.

annie bear, we live in widnes, cheshire- so not far from you.

i think we will got and visit it to have a look around and then make our minds up

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choccywoccydoodaa · 28/02/2006 08:25

Claire House sounds like a lovely way for you all to stay together yet also have a bit of a break. I can see how attending a hospice may force you to confront the reality of ds's illness, but this may well help you in the long run. Perhaps you just need a little more time to think about the idea - these decisions must be very difficult. Take care and use mumsnet as you need to.

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getbakainyourjimjams · 28/02/2006 09:07

I'm not sure if it was Claire house, but one of the Sunday papers ran a feature recently about a children's hospice. It looked lovely. Some of the children visited repeatedly for years and years, and it wasn't just a place to go and die, or built around dying iyswim. Living was very much on the agenda. The hydro pool and therapies would be lovely to access.

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Davros · 28/02/2006 10:58

That is one of the misunderstandings about Hospices. Many people use their facilities or even go in overnight without being the permanantly iyswim. They offer wonderful services and support but people can be very resistant because of the word hospice, maybe they need to think up a new one?

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desperateSCOUSEwife · 28/02/2006 15:42

I have heard that claire house is lovely- live near there

it is also only for children with life shortening/threatening illnesses
that is the criteria to be able to go

ds2 was put on list but i refused when he was a baby, as I wanted to spend so much time with him
but as he has got older his life span has been lengthened and he cannot now go for respite

dizzy take this opportunity up as I have heard it is fantastic and a lovely place
and I am sure your ds and your family will enjoy it:)
xxx
doormat

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dizzy34 · 28/02/2006 15:55

Hi doormat, whats your sons condition? Harrys life expectancy is between 4-10yrs at present.

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anniebear · 28/02/2006 15:58

dizzy34

can understand your fears, but lots of children do just go for respite

we went to a fair there once, couldn't look around properly, but what I did see was really nice

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desperateSCOUSEwife · 28/02/2006 15:59

dizzy it is severe global developement delay
but he is actually no dx

they did give me a life expectancy of up till early teens at the latest
but a few years ago this was backtracked as he was doing well
tbh dont know how long and I know how you feel, it is very hard but I would rather know iykwim
xxx

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desperateSCOUSEwife · 28/02/2006 16:05

ps dizzy
they treat the family as a whole iykwim
and apparently loads of fun things to do for you all

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