Here are some suggested organisations that offer expert advice on special needs.
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Is there a "developmental pediatrician" specialty in the UK? In the US, this is the ped specialty to whom you'd take your suspected SN child for evaluation.(37 Posts)
Usually, if you take your child to a regular pediatrician, they tell you "not to worry", the child will "grow out of it", he is "a little slow but will catch up". I am actually in Italy and when I took my ASD ds to a reg ped here for obvious speech delay, I was told that "he was not mute, right?" and denied services. Took me 4 more years to squeeze a dx out of them. In the US, this would be unthinkable. Am trying to figure out how things are in the UK, where we may move for work. So- where do I take my 2.5yo for a comprehensive evaluation bc I know he is speech delayed (btdt). We have insurance so am willing to pay, just tell me where to go, if anywhere. THANK YOU, ladies!
I would also be mindful of the massively different approaches between the UK and the US. For example, insurers in the US will regularly give kids 30 to 40 hours of ABA a week. In the UK ABA isn’t nearly as popular and I believe that it would be very difficult to get it paid for. The route that seems to be taken in the UK is more putting kids into mainstream settings (nursery/pre-school or school) and then giving them a shadow/TA (which you would have to fight for) to help them keep up/integrate. The main problem with this is that if they haven’t learnt the basics - joint attention, compliance etc. - through ABA or other individually tailored therapies it may be pretty unsuccessful.
This is just my experience of the two systems others may have had different experiences.
Dr Sethu Wariyar is a consultant in Paediatric in London, with a special interest in Neurodevelopmental problems particularly ADHD, ASD, Communication disorders, Development Co-ordination Disorders and Tic Disorders for over 10 years.
I don't know where in UK you are aiming for but in our case a joint research centre run by a local university child psychiatry dept and a local NHS children's hospital provided a fast track diagnosis.
I can't say how great you all are- THANK YOU. I have a wealth of info to digest now. R3dh3d, your dev psych eval at GOSH was done as a tertiary referral, I presume? Ie, in NHS. And still the school would not respect the recommendations? yikes.
Would agree with the general drift...
- there are few private paeds. In the UK, it tends to be the specialism they go into for love, not money, so only a handful of good ones do private practice. For general medical diagnosis (ie this is what is fundamentally causing your child's difficulties) you are probably better off in the queue. Furthermore there can be difficulties moving from private to NHS eg a private scan may not tell the NHS guru what he needs because the resolution is wrong.
- once you have a diagnosis, therapy can be accessed faster and often better privately.
- many treatments don't need a paed's diagnosis. You can start private SALT or physio while in the queue, though you risk change of approach when the diagnosis arrives
- there is a bit of a mess at the overlap between NHS and school: unlike the US, SN schools are entirely run by and for education. NHS services speak to the school and visit to provide therapy or input to education plans. But still integration is poor. DD1 had a fabulous developmental assessment by the developmental psych team at GOSH. School have not bothered to even read it, as it was not provided by the NHS people they have contact with. The school physio isn't much cop. I've talked to a far better one at the hospice and she has given us good advice which I mentioned at review to school. But they refuse to implement this advice because it wasn't officially given by the school physio... Sorry, waffly, but my point is you can buy in private services - but still have a fight to get benefit from them.
agree with yurt re:Ican nurseries. When I asked about DS going to an Ican nursery, I was told that he would have to be assessed by an educational psychologist and that there would be a several month wait for that.
it's easy and quick to arrange private speech therapy - is likely to cost around £75/hour.
It's hard to get into an iCAN nursery - usually you need to go via a CDC etc.
Message withdrawn at poster's request.
Message withdrawn at poster's request.
Hi mamax4, if you don't get any joy with GOSH try this,
The portland hospital is a private hospital in the centre of london. If you look on the right hand side of the page there is 'find a consultant'. This linked me into a consultant specialising in austism and two salts.
If this is not exactly what you are after, I'm sure they could help you with who else to try and of course, being private, will be familiar with offering services to people from abroad.
Lots of private medical srvices are based around Harley Street in London and my experience is that many of the professions have contacts who work privately.
One of the slt's mentioned on Portland site, Ruth Jacobs, has a large private slt practice in london.
I don't know her personally but have had contact with some of her therapists in the past.
Good luck. Hope some of this helps.
Re your comment:-
"All children are on SEN Early Years Action Plus". I presume this means that these kids are statemented, but can someone say if the fact that such a program exists for younger dcs means that they get to be on a "speed track" for assessment/treatment?"
No, you presume wrongly I am sorry to say. School Action Plus and a Statement of Special Needs are two very different things. SA plus is the stage below a statement. SA plus basically means that a child is on the SEN register and has outside agencies involved e.g developmental paed, occupational therapist, SALT etc.
A Statement of Special Needs is issued by the LEA in question and such documents are becoming increasingly harder to obtain.
School Action Plus is not legally binding (unlike a statement) so its scope in school can be quite limited. A Statement is legally binding and provides the child with a set number of hours of support each week.
Ladies, I am reading the ICAN site TClaner gave me, and they have a really cool thing- an integrated pre-school for speech delayed kids, but in a limited number of places. As I read, I found this sentence: "All children are on SEN Early Years Action Plus". I presume this means that these kids are statemented, but can someone say if the fact that such a program exists for younger dcs means that they get to be on a "speed track" for assessment/treatment? In the US, dcs under 3 fall under the jurisdiction of "Early Intervention" and things go really fast there and a dc d/n have to be legally "statemented" to get services if he is under 3.
Hi Tclanger, this is the link that I found, too, and will call them tomorrow am. I am not getting my hopes up, but 1) maybe they'll tell me something of use in any case, 2) I have to say that I feel less panicky about the process because I have found you all. You know who directed me here? I frequent another SN board, YouBeMom.com, out of NYC where I am from, and I posted whether anyone knew about SN in UK- bingo! We have to stick together, moms of special kids, there is no other way. Thanks again.
Message withdrawn at poster's request.
Hi Desperate. What I would like would be a comprehensive, from zero, developmental assessment, asap. I do know already that my 2.4 yo is speech delayed and he would for sure need speech therapy. I am afraid he may need other things, too (based on our experience w/our 10yo HFA who also started with 'only' speech delay), thus a dev ped assessment. I am just so worried about him and I have let so much time go by since it became clear he was delayed (not to my own volition but because there are no services where we live) that I really can't wait for the regular Child Dev Center route, which takes months. And THANK YOU ALL for your help- this is a great, great board and you are all great.
I'm confused. Is it just your ds' speech and language development you are concerned about? If that is the case, why are you not looking for a speech and language therepy assessment? Forgive me if I've not read the thread properly and there are other concerns too which is the reason for paediatrian request rather than salt.
Tclanger has given you all the relevant contact details for salt assessment.
I think it also depends on where you live as to how comprehensive community paediatric services are, as well as what school he eventually attends.
If you're after services - so therapy etc it's fairly easy to buy that in in the UK (not cheap though). Hopeless trying to access stuff without buying it in.
It's just the diagnosis that's hard to go private for.
Sorry, had to step away to feed dcs. We have a 10yo HFA ds and a 2.4yo who has a clear speech delay, both of whom get zero services in Italy. I tried hard to get it here, through state, paid, anything, but there is just nothing, no specialists, no training. The state neuropsych told me to speak Italian to my 2yo to address his speech delay, just absurd. We can move either to London or to the US, but moving to the US would be a greater upheaval in a number of respects, unrelated to dcs. For SN dcs, the US is really a century ahead of every other country, but as usual, one has to balance many other considerations as well (work, etc.) So I am a little stuck... my job is in Europe, and I could do it from the UK, but hearing you guys talk, SN services are sloooow in the UK, and I have already waited and waited here, before I decided to throw the towel in and move.
Bromley is in Kent, but it's also a London borough. I used to live there and work in Notting Hill whilst dh worked in the City. It's a 20 minute train ride from Victoria.
Why are you moving? <nosey>
Can you move anywhere?
Flamesparrow, this is exactly my situation in Italy. My 2.4yo has been waiting for 6 months to have his hearing properly checked. He failed 2 tests prior and the next one was scheduled for 2 months later. At this age, 2 months is an eternity. His speech is not progressing at all. Here, there are no specialist at ANY price - public, private, there are just no specialists. I am hoping I can at least find private services in the UK... but I can see it's not easy. Dunno. Maybe I should rethink my move.
Message withdrawn at poster's request.
.....these assessments are carried out, for the most part, by a sub-specialist known as a Community Paediatrician. Access is either via the GP or from contact with acute services.
...the reason that private specialists in this area are difficult to find is simple. There ain't any. Or at least, so few as to be negligible (and frankly I would have doubts about anyone claiming to be one such). In fact, there are precious few private paediatricians of any kind in the UK (unlike, say, Orthopaedics or other surgical specialties).
...the best service in the UK is the free at the point of use variety. It is is a good service, if not flawless, as the likelihood is that any given area will have just the one, so you are subject to the strengths and weaknesses of that individual.
Completely agree about the wait for being seen when your car can be looked at so fast
I have been asking about DD's speech since she started preschool - they brushed me off telling me she would catch up, and I assumed I was worrying pfb type woman. She then started school and in November at parent's evening they asked if we would like her assessed for speech therapy. We are still waiting.
She failed her hearing test in April.
Still waiting for audiology. There is no clinic in June .
By the time she is seen, she will have been at school for a full year. It could be something as simple as needing grommets. If I hadn't been brushed off when she was 3, she wouldn't have struggled through her first year at school
Not that any of that helps you Needed a rant!