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SN children

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Original poster

How often do you see your childs paed?

20 replies

macwoozy · 07/09/2006 09:04

I missed my last paed appt, I hadn't put the date down in my diary and just totally forgot. This morning I receieved a letter from him, stating that I didn't attend an appt etc, and that ds is to be discharged from routine appts. Just like that, no offer of another appt. Ds has been going every 4-6months for the past 3 1/2 years, so I feel kind of abandoned, with no help from his paed anymore. How often do you see your childs paed?

OP posts:

Tiggiwinkle · 07/09/2006 09:14

We were discharged after one follow-up appointment straight after his diagnosis! Just told to re-refer if there are new problems.

MrsFio · 07/09/2006 09:15

We see ours annually, HTH

dd has sev GDD

PeachyClairHasBadHair · 07/09/2006 09:56

telephone and tell them you NEED that appointment, we have something similar going on with SALT (they offered an apptmt whislt DS was away at mums, I cancelled and you get 1 cancelleation- the next one they offered was 3 days after, before he got back. I mean, DOH!) I ahve written to them requesting them to 'confirm DS is still on list for an appointment due to the fact that the cancellation was due to apptmt spacing', I would do similar if I were you.

We are being seen again in October (DX in July), the Paed said she can see us at short notice if we call during the first months after a dx. I have been told this is nothing short of miraculous, most HFA kids are discharged on dx.

Certainly when Sam got his original traits of DX we were told to go awaya nd deal with it

coppertop · 07/09/2006 10:13

Ds2 sees the Paed every 6mths or so but if I need to see him before then I can phone and be sent an appointment. Ds1 has the same Paed and sees him every 12 months unless I request another appointment before then.

I know that SALT in our area have recently started being much stricter about people missing appointments. Until recently, if you missed an appointment you had 2 weeks to contact them and arrange another. If not then your child was discharged. Now if you don't phone to say in advance that you can't make it then your child is discharged immediately. Ds2's SALT told me that she regularly ends up doing paperwork during appointment times because people don't turn up.

coppertop · 07/09/2006 10:15

Not talking about your situation obviously, Peachy.

dinosaur · 07/09/2006 10:17

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

PeachyClairHasBadHair · 07/09/2006 10:27

(LOL Coppertop, anyway I did phone them, just my eysight is too poor to read their tiny font and I don't know if I got them, or an extension 16 miles away LOL!)

Davros · 07/09/2006 10:59

We go about every 6 months, sometimes more often. Don't just accept it if you want to see the Paed, send a letter explaining clearly and make sure its followed up. Maybe copy it to PALs to make sure it goes to more than one place so they can't say they didn't get it which would be typical.

Saker · 07/09/2006 11:02

We see ours about every 6months also.

Original poster

macwoozy · 07/09/2006 11:14

I'm shocked to hear that a few of you have not had any follow up appts after diagnosis.
I rang up his secretary who explained that it's common practice not to be offered another appt if you didn't attend the last two appts, although I only missed one. I will write and explain and see if I can get back in his books. I'm wondering is it's anything to do with me turning down the help from CAMHS for which he gave the original referral and then what with a missed a appt he might presume I no longer need his help.

OP posts:

Original poster

macwoozy · 07/09/2006 11:15

Davros, what's PALs?

OP posts:

morocco · 07/09/2006 11:16

that's a bit abrupt isn't it?? I guess it's just to sort out the people who really don't need to see paed (and so won't get back in touch to make new appt) from those who do (and will phone up and kick up a fuss). ds1 has medical condition, we go every 2-4 months but I'd be horrified to be thrown off that easily. Am now paranoid about missing appts!

Piffle · 07/09/2006 11:17

was 6 montly but now dd is doing so well she is on annual review.
Ring the consultants secretary apologise and explain and ask for the next available appt to discuss your concerns

Davros · 07/09/2006 11:30

PALs = Patients ???? Liaison Service. All hospitals have it. But maybe don't copy them if you don't want to look cross!

eidsvold · 07/09/2006 11:35

dd1 sees hers every 3 to 6 months depending on what is going on with her health.

KarenThirl · 07/09/2006 11:47

Hahahahaha!

Paediatrician? We don't even HAVE one!! The paed who assessed J was on a year's secondment to our hospital (although we didn't know that at the time), she left just after the inconclusive assessment and was never replaced. Same with the psychologist who did IQ and psychometrics testing. All we had was the incompetent CAMHS nurse who couldn't get past advising us to use the naughty step, and when we said we didn't want her involvement any more (because she was crap and patronising) we were discharged from the service.

We've now had a second opinion assessment at a specialist autism unit and J got the diagnosis he needed, but they don't offer follow-up work. The dx will be referred back to the originating hospital for them to decide what action to take, but I can't see there being a paed involved.

Sorry, it still pi**es me off how badly we were treated

Original poster

macwoozy · 07/09/2006 12:56

Like you karenthirl, I wasn't too impressed with CAMHS, and that was with an appt with the consultant! But looking back I'm thinking I might have been a bit too hasty to turn down their help, I could do with a bit now. I've not had half the battle you've had, but already I can feel resentment building up. So totally see why you're so angry with it all.

OP posts:

mamadadawahwah · 07/09/2006 14:46

Hope never to see ours again!! All we got was doom and gloom a year ago. He poo pooed anything and everything we were doing like ABA and biomedical interventions and even our hopes for mainstream school. A complete and utter pr.ck.

Anyway, i wouldnt take my kid to the doctor now unless his arm was falling off.

dizzy34 · 07/09/2006 23:14

Bad day to ask this question as we have just spent another 5 hours at Alder Hey. My life seems to revolve around appts..we see the consultant paed neuro every 3-4mths, gastric consultant 6mthly, neuro surgeon every 12wks , ENT have just discharged us (thank god-they have decided not to remove his tonsils), Respiratory Consultant 4mthly, goin to see the dental surgeon for first appt for operation (splitting open gums to allow teeth through) on 27/9 and Gastro surgeon for reflux operation on 13/10.Inbetween this we have to fit in twice weekly physio and hyrdro therapy and visits from the community paed nurse specialists, the dietician and the epilepsy nurse.

dizzy34 · 07/09/2006 23:16

Sorry, just re read that post and i sound awful for moaning. We are so lucky to have a fantastic service and brilliant docters from Alder Hey and i shouldnt moan...just a bad day i guess

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