Here are some suggested organisations that offer expert advice on SN.
Good places for medical care, help and schooling for disabled with complex health needs(12 Posts)
Hi. We've recently returned to the U.K. from overseas, and are looking for a house to buy. We want to settle in a place where our toddler with severe epilepsy and global disability (tube-fed, no mobility or speech) will get the best possible chance in life. Good hospital is the priority. Good safe schooling at some point maybe (currently in home care). And definitely help offered at home. If anyone can share where it's good and where it's best to avoid, it would be very much appreciated. We are open to anywhere in England. Thanks.
If it was me I would focus on either health or education and find the school/hospital with the best reputation. Are you looking NSE or W? Perhaps Bristol or Oxford? Dd was very well cared for at Bristol.
Thank you so much for your response. I don't mind where -N,S,W,E. Good health care is an absolute priority. In terms of schooling, I don't actually mean "education" at this stage, I just mean a good special school where I can take him for a few hours a day (to see if he benefits from that in any way), and would feel safe about it.
Is there a particular hospital etc. in Bristol that you can recommend?
Alder Hey Childrens hospital is excellent. Based in Liverpool. Out of the local LA areas, Sefton is good. They have 2 special schools which both can cater for children with complex health and learning difficulties from 4yr right through to 19yrs. Hydro pools and different therapies delivered in school alongside the education.
Alternatively, you coukd try to get all dc's needs met in one place - a specialist epilepsy school. There's St Elizabeth's in Hertfordshire (an onsite team of nurses) or Young Epilepsy (an onsite team of doctors and nurses) in Surrey, both have visiting consultant neurologists. I think both start from 5 years old. Its unlikely anybody would support a residential placement for a 5 year old, so you would have to live near enough for a day placement. Unfortunately, I can't recommend any of the nearby Local Authorities, such as Hertfordshire, Essex, Surrey, Kent, or East Sussex. However both schools have a fair few children from their own counties, so parents do get them there!
Some special schools (SLD schools here) have an onsite nurse, who may be very good on epilepsy, as it tends to go with the territory - whereas MLD schools here don't afaik. It will depend on the LA, and where dc's learning disabilities lie?
In the SE, I suggest you try to get dc under Gt Ormonde St in London, which has links with St Elizabeths and Young Epilepsy. Prof. Helen Cross of GOSH used to manage the epilepsy of the children at St Elizabeth's - I am not sure who does now. She is the health trustee of Young Epilepsy, although she has more of an advisory role there, than hands on. Both schools have an FE college, and St Elizabeth's has adult day and residential services.
In the NW, the David Lewis Centre has a specialist epilepsy school from 16; a FE college, and Adult day and residential services. They have an medical centre with visiting consultant neurologists one day a week, and an onsite team of doctors and nurses.
I was going to suggest looking at epilepsy sites as their are specialist epilepsy schools.
I would honestly start with health as that will be the barrier to education.
Also have you considered being near a good child hospice/respite type centre that provide stays for children and also sessions you can attend so you can get a break. I'm sure that's the least of your priorities but your good health will be vital in this too.
I have also heard Bristol are very good and marvellous at working with parents rather than dictating to them! I've also heard Southampton are good like this too. But I'd avoid Hampshire as an LA. <bitter experience>
Thank you very much, ladies, for taking the time to respond. Very helpful info. I think I want to start with Great Ormond Street, although I don't know how easy or difficult it is to get referred there from different parts of the country. We have started looking for a house in SE, where we have some family and friends - north Surrey.
My son has a very rare genetic disorder, which I want to get a second opinion on. And also, I want to make sure that I don't miss any research in that area of genetics. So I guess GOSH should be the right place for that (?)
Education is certainly not a priority right now, as at the age of 4 he can barely hold his head, and cannot roll onto his tummy. So his daily routine just involves a variety of therapies - and he has made a a lot of progress from the condition he was in at birth and the first year. Ideally I'd like to continue his training & education at home.
Have you looked at conductive therapy? (May not be exactly what it's called!)
There is a place called the Rainbow centre that runs schooling/therapies and it's very centred around the physical and independent movements of their young pupils.
I'll admit I don't know much about it but what I saw on a visit once certainly sparked my interest.
Yes, some elements of Peto (or Conductive therapy), as well as various other methods, have been a part of his collective therapy programme. Last year we finally established what works for him best and brings results, so we're not searching for new developmental therapies at this moment. Just good, safe, advanced health-care to begin with.
Hi i have a child of nearly 3 who also has complex needs caused by brain damage due to epilepsy.
He is tube fed and completely reliant on us to carry out all his care. He sounds v similar to your son.
I live in the midlands and there are several good childrens hosp in the area.
You have Alderhay as mentioned and also birmingham childrens hosp and manchester though dont have personal experience of that one.
Queens medical centre at Nottingham also have good epilepsy care.
My child will be attending a special school that was newly built 3 yrs ago and has fantastic facilities eg hydrotherapy pool ,sensory and soft play rooms ,large outdoor special playground.
He will be in a small pmld class and i am sure he will do well there so there are some great schools out there when you are ready .
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