Hello everyone
We are hopefully moving to Hitchin in Hertfordshire this year so that Billy (21 months, he has a twin sister too) can be treated at GOSH. He has Apert Syndrome (and a trachy since 16 weeks old) and can only be treated at one of the four Craniofacial hospitals in the UK. I have a few questions:
Does anyone live or have lived in the area with a kid with a trachy and if so what is it like in terms of CNN's, respite, supplies.
What are social services like in the area?
We currently live in Stoke on Trent, where social services (children's services) are one of the worst in the country. It is a constant battle to get anything and has taken us 15 months without respite to get just 16 hrs a month which can only be used during the day. No night time cover at all. And like all babies with trachy's Billy has suffered numerous chest infections with lots and lots of overnight suctioning and far too many weeks in hospital. We use on average 200 catheters a week which again can be double that when he has an infection. We've never had a problem with them not supplying us catheters, so we are hoping that remains the same when we move.
Many thanks
Denise
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3 comments:
Hi Denise
We have another ACT member who lives in Hitchin, although their daughter was decannulated in 2003. I will try to contact them to see if they would be willing to give you the low-down on living in the area. We also have other members from Hertfordshire so can probably put you in touch with them if you want.
Sorry to hear that the support has been somewhat lacking in the Stoke on Trent area. Let's hope you get a better deal once you move! Please let us know your new address once you are settled in, so we can make sure your newsletters get sent to the correct address.
Amanda Saunders
Just wanted to say good luck with your move. I can't believe you don't get respite from your current CNN's, that stinks. I have no experience of Hitchin but from how you describe your area - it's gotta be an improvement. Hope it all goes well. xx
Julie
Amanda
Thanks very much that would be so helpful. We are also looking at Hertford as I have lived in the town before, so if there are any members there too I would be really appreciate the low down.
Julie
We have a CNN team and a Childrens airway support team in Stoke. The CNN's really only provide supplies and nursing care as and when needed like changing dressings after Billy had bone and skin grafts. Really we should be supported by the Children's airway support team but Billy does not fit their criteria because he doesn't have oxygen at home :-( There are countless times when he has had oxygen for days and day but we have had to take him to hospital for that.
We were in Alder Hey last Friday as Billy had his adenoids removed, and I met two other families with trachy kids, both had support from the CNN teams; one had 30 hrs a week the other 50 hrs a week! I was really pleased for them as I think they both needed that level of support but came away thinking it is really a postcode lottery. Billy is a twin and I have an older daughter too, so it has been a real struggle as dad works away so I'm on my own a lot with them during the week.
Many thanks
Denise
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