What is the neuro disability team?

[used2bthin]

I mean I know the name is quite self explanatory but is it somewhere children go onto when they are too old for community paeds or something?

We have a neurology appointment in april due to dd's suspected epilepsy. So its not to do with that.

She has SLI/ learning difficulties (depending on who writes the report!)and we've been seeing various people and having various tests, she saw a community paed last year and the year before so i rang the secretary recently to ask where our follow up appointment was as had been expecting one and she said she didn't have us booked in but would send an appointment. Then I got the one from neuro disability team so am wondering if community paeds have referred her on/ Or they are the same team? Bit odd!

bump-rang today to see who the dr was and its the same one who did her last developmental assessment-maybe they've changed the name of the clinic? iT WAS DEFINATELY COMMUNITY PAEDS LAST TIME.

It will just be the Comm paed who does all the neuro -disability stuff. Our area had about 6 community paeds but they all had different caseloads which were (mostly) down to type of disability/main area of concern.

So they will be comm paed. But will also be part of the neuro disability team.

Probably.

Thanks. So they have decided this is where she is best seen presumably.

It seems a little out of the blue you see because as far as I was aware no cause or diagnosis for her difficulties has been officially given so I didn't know they were calling it neurological even!But then it is to do with brain development so I suppose regardless of cause, diagnosis etc it is neurological?!

Yes, you have general paediatricians and specialist paediatricians. They can all see all patients, but each paediatrician usually develops a 'specialist interest'. DD1's paed is a Consultant Paediatrician with a special interest in neurodisability and autism.

Thanks. So neuro disability is any disability which is or could be neurological I guess?

Stupid question but is specific language impairment neurological always do you know?

As far as I can see our hospital has no neuro disability team but as you say, it must just be that consultants speciality.

Sorry, obviously they do have one but it isn't listed on the website.

DS was seen by the community pead at 2 for development assessment. He was then referred on to another member of the team who specialises in neuro disability and was qualified to diagnoses ASD.

Thanks, I am glad we will be seeing someone specialised. June seems ages away and I have a baby to get out two weeks before the appointment but it would be amazing if they could provide us with some answers.

I am genuinely wondering whether I missed someone telling me we were being referred on to them or whether they have just done it without mentioning it!

My DS was referred at 2.10 to a community paed who specialises in neuro developmental issues such as all those on the autistic spectrum and including SLI. He saw her rather than one of the other paeds as both the SALT and HV had ASD type concerns. She held a 'communication and interaction' clinic including a SALT, which was where DS was DXed. So maybe the neuro disability team is just a sub-section of the community paeds? Some of the paeds seem to specialise in CP and GDD type problems, others in epilepsy, physical issues etc. Though there can obviously be a lot of crossover, maybe the first assessment has pointed them in looking in a particular direction?

Thanks Ellenjane. No one other than the ed psych (on the phone) has diagnosed anything for her learning difficulties formally, it always says severe speech and language difficulties or learning difficulties but it is SLI so that probably is why. Also she has microcephaly and epilepsy (she is seen for the epilepsy in a seperate clinic-neurology though so don't think its that) but it must be they've decided this is where she best fits. Hopefully we will get further with whats going on if they are more specialised.

It's the same paed. Not someone more specialised... She's always been seen by the comm paed who deals with neuro stuff (as well as everything else) just that this time they've put that on the clinic heading.

Same doc, same assessments, same check-ups, you just hadn't realised that your comm paed was the neuro comm paed... There will be no difference at all in the service you are given. They have just put the alternate header on the appointment... Sometimes they do roster a particular clinic for the more neuro related children, but the docs and the service is exactly the same as you would receive in the general clinic.

She has always been seen by the neuro comm paed. And will continue to be seen by the same guy, with referrals out of actual neurology re epilepsy to specialists. No change. That's what the comm paed is for. whether you call them the comm paed, or the neuro disability paed who works in the community. Same bloke/gal.

Good luck with the baby x

Dunno why it said 'of' in there... Was supposed to be 'for'...

Thanks, oh thats a shame. And they are confusing with the different clinic titles . Still they can do the assessment and it won't make a difference at least!

I'm sure they just do it to confuse parents. This week we saw a physiatrist just for fun. I didn't think they could conjure up any name changes that would surprise me, but this one was new. did exactly the same as every other paed we've ever seen though....

Thats a new one on me too! Ours like to keep us on our toes by writing differing descriptions of DD's various issues too!