Got a letter from paediatrician- not what I was expecting

[Dinkysmummy]

It says

'On 1st march 2013, we received a referral from dr. X from x medical practice, requesting an appointment for Dinky.
Following disscussion at our referrals group meeting, we would be grateful if you could complete and return the attached questionaire as soon as possible in order to aid the assessment process. Please ask Dinky's school to complete the school questionaire.
On receipt of these forms, we will consider arranging an appointment.

Blah blah
Paed blah blah blah

Is it normal to have to complete the forms before being offered an appointment?
TIA

Hi sounds similar. I think our appointment was set and we were given a deadline to get the forms back, within two weeks I think. After that, we had the appt with comm paed and she did an on line test, I think it was the 3di. After that, blood tests and observations by SALT and Ed Psych. ADOS test in December and finally diagnosis. First appointment was July 12 and diagnosis Feb 13.

This is going to happen more and more. In NHS terms it's "opt in", because so many people are referred to services that actually don't want, need or have no intention of attending an appointment that this is a way of ensuring that services are targeted at those who will attend and benefit. Generally it is considered triage.

With long waiting lists it makes good sense. My own ds was referred to a Paed for example because he had dropped off the bottom of the charts for weight. However, by the time the appointment rolled round, he was back up to the 50th, so an appointment for us would have cost the NHS in the region of £300-400 to see him and say, yeah, he's fine now (and of course delay others with much more serious concerns from being seen).

The other problem is, dinky starts a new school on the 15th, do I ask the old school to fill it in or give it to the new school to fill in after the first week?

I think it would depend on why you're switching schools. If you're going to a new school because the old school did not recognise your child's SNs/disabilities or support them, then perhaps it would be best to get the new school to fill them out. If you think the old school would do it justice, then have the old school fill them out.

Another thought would be to speak to the SENCO at the new school and ask them.

'In NHS terms it's "opt in", because so many people are referred to services that actually don't want, need or have no intention of attending an appointment that this is a way of ensuring that services are targeted at those who will attend and benefit. Generally it is considered triage.'

Except that round here. You don't get a letter asking you to do something, you get a letter telling you that because you didn't do something then you are discharged. Then you spend a week phoning round departments and pleading and eventually, someone 'does you a favour' and reinstates you but you have to go to the back of the waiting list.

As starlight said. We had similar from camhs (they sent the paperwork to school themselves) for our Ds. It was to collect further evidence before they decided to investigate further before any appointments were made.

Either they have yet to decide whether to see her or are being efficient, gathering evidence to clarify the issues and making sure she's being seen by the right people (not CAMHs for instance). What questionnaires have they sent? We have done loads of questionnaires, if I ever see a Connors questionnaire I might actually explode! Nail on head Trigglesx with the school's input.

Well, they sent
'autism spectrum assessment clinic
Information from parents of a school aged child' for me
And
'communication and social behaviour assessment'
Information from school But they are both the same except the added questions for the school 'stage on SEN register' and 'how does the child's academic skills compare with their peers?'

It is a basic questionnaire,

Social interaction, use of language, preoccupations unusual or repetitive behaviour, sensory issues, functional skills, literalness, and attention and consentration
All 'No (0) sometimes (1) yes (2)' questions

Then give a space at the back for additional comments.

I only have a slight issue in that if they purely go on the numbered score then Dinky probably won't be seen as myself, my friend and the GP suspect PDA, and while she has some ASD traits, she doesn't fit the ASD profile.
Although they do have space for comments after each question and a space for me to write any relevant information. So I can list all the other issues and possibly send a few photocopies from my behaviour diary?

Do let me know how you get on,as I expect we will be receiving this soon,and have the same concerns.
We also suspect PDA and have done for a long time.

I hope you manage to get the referral you need.

I would send as much info as you think would be useful. Can't do any harm.

"Except that round here. You don't get a letter asking you to do something, you get a letter telling you that because you didn't do something then you are discharged. Then you spend a week phoning round departments and pleading and eventually, someone 'does you a favour' and reinstates you but you have to go to the back of the waiting list."

Oh here too. I was discharged from Psychological Therapies for not responding to the choose and book appointment which arrived two days before I was due. I had been referred at 6 weeks pregnant and NICE guidelines say pregnant women should be prioritised, especially as my need for therapy was directly related to the pregnancy (perinatal/due to threatened miscarriage etc).

I didn't, to be fair, go to the back of the waiting list and really that is poor practice. I think waving the NICE guidelines about metaphorically helped, as well as the fact I was very calm and said I was going to complain to the Chief Exec.

I don't think it's ideal, but I do think it will happen more and more.

As far as schools go, do you think that the old school would give an acurate picture of dinky? if not I would go with the new school. They will observe her and fill in what they can and then make a note that they have only had her for a short time.

It sounds quite a good idea to me and hopefully you wont have to wait too long for the appointment afterwards.

Good luck

I'm going to ask the new school to fill in the form, no matter who fills it in in the previous school, they all think dinky's issues are housing related and treated us appallingly. The class teacher was less than useless, the senco thought that dinky fit the criteria for PDA until I told her what I'd written were the criteria of a recognised condition, then back tracked.

I will ask the new school when she starts. (I have a feeling they are going to get sick of the sight of me! )

I think that is a good decision DM and I am sure the new school will support you. At the end of the day it is in their best interests to know what support dinky might need.

Good luck

"Ode to Patient Choice" by S.L McKenzie

You don't get a letter
asking you to do something,
you get a letter telling you
that because you didn't do something then you are discharged.
Then you spend a week
phoning round departments
and pleading
and eventually, someone 'does you a favour'
and reinstates you
but you have to go to the back of the waiting list

So dinkysmummy, it is common (though misused) practice and in fairness, the SDQ etc can be useful

would suggest you keep a bit quiet about PDA until you've sussed whether they 'believe' in it as a diagnosis...

otherwise it's far too easy to dismiss the issues as 'seen Dr Google, have you, sorry, we simply don't 'do' PDA round here, goodbye' without actually listening to what you're telling them.

Contrast with 'she doesn't really fit asd but here's a massive list of all the problems we agree she has, I'm not sure what to advise... oh look, yes, it matches very well to a complex-inflexible-demand-avoidance-anxious-profile...now, didn't I recently read something about an emerging new diagnostic classification' accepting from dinkysmummy

I think my GP might have let the ship sail on that one.
He brought up PDA and decided (once he'd spoken to the managing partner GP woman) to do a referral.
I won't mention it tho I will wait for them to either point it out themselves or say she doesn't have any problems for me to say well there is something that fits longggg down the line