when will it all stop? seeing so many at hospital for dd

[trace2]

upto now we see!
2 diffrent peads for gasto
pead for neuro
pead for develement
physio
dietion
spech therpy,
now been told we will have to see occupational therpist and going to alliergy clinc also dematolagy.

we live at the bloody hospital and still noone as any idea whats up wi her

Oh Trace, what a list!
Does your hospital have a CDC, if so they may have a family/case co-ordinator, ours was very good a trying to getting as many of ds2's appnts on the same day & organising multi disciplinary meetings & assessments.
She is alsoa n expert at nagging the DR's for reports & helped with DLA forms & chasing up stuff for us.

DO you ahve one lead PAED with overall responsibility for your DD.
max x

we have just been given a family nurse, she comes to app with us when she can also come to our house evwery two weeks, but other than that no, and the peads we see 1 of gastric is from childrens hospital so is neuro, the other gastric pead is out local one and the other pead is at a clinc near us, some times we see some on same days but usally one in morning and then back in afternooon, we have tried sorting app out but they just say they get us in when they can.

dd is only 9 1/2 m old too, been to gp today for sticky eye and he was saying how its first time hes seen her, but read lots about her

What a PITA, it makes such a difference if they can organise themselves.
On a positive note DS2's OT was the most fantastic person & the best therapy he has ever had, she was also very good a kicking ars* & took some of the ringing round & chasing up off of us, so hopefully the OT will be helpful rather than just looking at your dd searching for a dx.

it does sound massively overloaded. I wonder if maybe you need a few weeks off any appointments if at all possible to give you a chance to relax a bit.

Hi, understand totally how you feel 'L' has lots of appointments and they all seem to come together . As mentioned it is good if you can get one Doctor to be your lead/co-ordinator (esp if a consultant) as they tend to do a lot of the co-ordinating for you

trace2 - this was us eight months ago (and still is in terms of appts) but our GP referred my ds2 to a consultant community peadiatrician and she has been instrumental in obtaining a diagnosis but mainly she ensures that everyone talks to each other about him. Before this I would be doing all of the communicating on all their behalf, and who knows what I would neglect to say that could of been vital!

Hi,

Coordination is one of our major problems, DS2, 16 months, has seen more drs in his life than I!

He's seen:

GP
pediatrician
Community ped (useless but anyway...)
neurologist
neurophysiologist
neurophysiologist (?) who specialises in muscular disorders
ENT surgeone (*2)
opthalmologist
audiologist
endocrinologist (*2)
physiotherapist (*2)
OT (*4)
SALT (*4)

The neurologist has been instrumental in referring DS2 on, I think the GP wants to centralise things, but we found out this week he has left for pastures greener. We asked another GP how we can centralise all, but the neurologist said all we can do is make sure we get all letters between drs (even if they make scary guesses before all tests done). If a dr suggests something, we try to arrange most through neuro the necessary tests eg back in Dec the muscular dr suggested some tests, and DS2 is having an operation in April, so we thought it would be best to try to combine (to save a GA - hopefully it will work out!).

It's frustrating, maybe if they all got together they could work DS2 out!

All the best

oh I left out his two urologist - the 2nd one is best friends with the second endo, who in turn has suggested some tests (at GOSH on Monday).

Seems to be not who you know but who you know!

not what you know but who you know!

I so know what you mean. We have more 'people' than J-Lo. It IS overwhelming at times but because we don't know what's wrong and we're so worried about the eating side of things, I'm glad that there are so many people looking out for DD and that I'm able to cope with being her keyworker.
In our child development clinic it's almost impossible to coordiate appts although I do my best. Today I had to remind dietitian to speak to medical paediatrician, SALT and portage re eating; get SALT to file a report so I could show it to medical and developmental paediatrician; and ring the orthopaedics guy's secretary to find out where his report was.

OTPhysio SALT Portage
Audiology team (incl. hearing aid technician, audiovestibular consultant, audiologist)*
plus GOSH audiology/ENT (because they're taking over some of her audiology before/after grommets go in)
Paediatrician (medical)!
Paediatrician (developmental)*
Paediatrician (neurology)&
Genetics Consultant %
Dietitian !
Orthopaedics ^
Vision clinic team (optometrist etc) ! and $
oh and we're probably getting a feeding clinic %

• Child development centre ! Local Hosp & Hammersmith ^ Royal London $ Moorfields % GOSH

Ooh, didn't mean that to appear in bold--it was part of my fancy code system for the different hospital venues.

And another thing.
Everywhere we go the coffee-bar facilities are sadly lacking. I think I should start a thread about this. Us multi-hospital users could start a kind of Michelin-style guide for hospital caffs.

there is supposed to be some sort of government initiative called early support to make it easier for parents in the situation where you are seeing shed loads of professionals -

web page here.

www.earlysupport.org.uk/

The only evidence I've seen of it in my area mind you is a booklet that I found in a Surestart centre

thank you all for sharing! i know theres other out there worse than us i just needed to moan and tbh i would do it more if it ment we found out what was wrong with dd. and i hate having to each time we go in what other peads or so on say.

TotalChaos thank for link going to read now

Early support has some really excellent stuff--I particularly like the idea of the introductory courses for parents new to the world of special needs. But none of it seems to be available anywhere. There are also audit tools available for monitoring the quality of local services and how well they cope with families who use lots of different health professionals. I'm getting involved in a group which is going to do just that as they say they welcome parent involvement. Hope I get a whopping consultancy fee. Althogh I think it might just be a couple of hours nursery care paid for and a biscuit!

I was "introduced " to the early support pack, I do keep all ds2's appnts, letters & reports in the box file thingy BUT other than that nothing has changed since receiving this big box of files.
The ideas good if its properly used by all the professionals I suppose it could work but for us ds2 having a family/case co-ordinator is far more beneficial than the box of glossy literature.

Hear hear, mymate! By the time I received my nice blue file I had already creatd my own personalised version. Which has a nice picture of the mountain DD is named after stuck on the front of it.

We got the special needs pack too. We found the whole experience disgusting. They told us that we were right that DS2 has problems, that he will have them "forever" (how they could tell that in a 10 month old before all tests have been done no idea), that we would feel out of place amongst nt children - oh and by the way, here's your special needs pack, welcome to your new world, happy reading!

Tomorrow we were supposed to go back to the CDC for his review, I have no desire to ever go back there again - luckily his appointment at GOSH came through for tomorrow so very happy to cancel CDC, who have been useless....

rant over!

so basically the early support pack is just a load of paperwork, it doesn't mean your child has a keyworker who sorts appointments and useful stuff out for you?

if only....

The OT also gave us a pack on VI, and hearing issues, but actual human contact, what's that?

We are fortunate in that ds2 does have a key worker/co-ordinator but she was in place before the early support pack was dumped on us.

I should imagine the govnt could fund a keyworker at each CDC for the same cost as all these bloody box files & useless mags of smiley sn families & think of the trees it would save too!

I wonder if there is any area of the country where all the Early Years Support is happening--ie, not just being handed piles of paper, but the family support that's supposed to accompany it?
mm22 I was just looking at your earlier post about needing coordination. I was told that a parent or keyworker can ask for a meeting between the various health professionals involved. In our case the community paediatrician's department should take that on because they're in nominal contol of the developmental side of things, but as they can't even organise to review their patients on time, I'm my own keyworker and am going to sort it out myself!

I am shocked to learn of Early Years Support! It has never been offered to us.

As I said in my earlier post it was the involvement of the consultant comm pead that makes the difference for us. I need to say that we had been under her care for a while but it was only on stamping my feet that we eventually got see the consultant!

It really is an outrage how services differ so greatly from region to region.

When my ds was a year old we moved to a different part of the country and of course that meant changing hospitals etc. It was only when we met the consultant comm pead that she told us she was trying to obtain his previous hospital notes. After three years of living here (and practically at the bloody hospital),seeing six different consultants someone finally thought to obtain his original notes!

It would appear that from these notes and getting the different professionals to communicate they have been able to obtain a diagnosis. But more importantly than that they are now able to help him!

One person doing these things for you can make such a difference, the problem seems to be getting to see that person!