Down's Syndrome provision in Cambridgeshire, Lincolnshire, Norfolk

[BigCC]

Hello - I have a DD aged five months diagnosed with Down's Syndrome at birth. I have just lost my job and we have an opportunity to move out of central London to the above named areas. I would be very grateful to hear from Mums in those areas who are raising children with Down's Syndrome - our little girl has good health so far (heart, bowel etc) and we are currently getting one physio session a month, one visit every six weeks from pre-school teacher, no portage yet - and there seems to be a waiting list. I have heard that Cambridgeshire is the better authority, but I've no idea whether this is true or not. Any advice at all gratefully received.

Hi Bigcc, I have a 2 yr old DS with down's and am in Cambridgeshire.
The provision so far has been fantastic. My DS has support from:

portage (from 4 months)
speech therapy (from 9 months)
physio (from 4 months)
occupational therapy (from 18 months)
Ongoing check ups from the children's unit at Hinchingbrooke hospital since birth.

We also have access to a range of groups such as music therapy and are involved in events run by portage which are lots of fun.
There is a really friendly and supportive toddler group for children with DS and their siblings which meets every month and is run alongside mencap.

please PM me if you want to find out more I'd be happy to help

Thanks adriennemole, this sounds like really good provision and as though you are happy with it. I haven't posted before and once I work out how to PM I will do :) Have you any thoughts yet about schools or are you a long way off all of that? Hope your little one has been healthy throughout.

Hi BigCC

We have a little boy with DS, he's 10 months old and has had many additional health complications. Living in Lincoln. Must say the quality of services we've received have been very good so far. He has an excellent Consultant and has had very good medical care under local and regional hospitals. Cardiac cons comes to Lincoln monthly from Leicester so we dont have to travel. As for community services I really cant fault them either. He's had physio from 3 months, portage from 4 months, slt from 2 months due to feeding issues, ot within weeks of referral, sensory impairment teacher from 3 months and specialist creche facilities from 2 months...you get the drift. Good quality services when we've needed then. There are times you have to be quite assertive but thats the same with any services. I've also been very impressed with local DS support group but have only just started to get involved so cant comment too much.

School-wise, its a difficult time to comment on Lincoln Special Needs schools as there are major changes happening over the next couple of years with one school closing and the children being moved to one of the other 2 but from what I can see there is investment rather than cuts. Who knows how it will pan out but its a bit off for us yet.

HTH x

Hi CC,
I've PM'd you