Update!! Referral turned down.

[hotmamalovespavlova]

So I receive my mail this am to be greeted by the following letter a copy of the one sent to my GP.

Thank you for referring this young child to PCAMHS.
Please see attached guidelines for referrees.

As this child is under 5 and the issues described are related to parenting issues, this does not indicate a PCAMHS intervention at this stage.
It would be appropriate to request help and advice from the health visitor or that the parents access a parenting course to help with the issues described.
We will therefore not be accepting this referral.

WTF GRRRRRRRRRRR

I would appreciate your thoughts on my next step thanks in advance

[claw3]

Hi there,

I lodged a complaint yesterday about my son's treatment or lack of it and found this -

www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

Hope this is of some help, apparently they have to reply within 25 days.

[debs40]

How frustrating! What was the referral for and who referred your dc? Can you back to them and discuss it too and get their view?

I know there are protocols for ASD assessment if that is what it is for and there is a strategic guidance document about access to CAMHS in my local area which I found on the net. It sets out the criteria for acceptance of referrals e.g. here the Consultant Paed at the hospital is the gateway for referrals and a GP/HV cannot do this directly.

This means you have to see the community paed and then the consultant paed before being referred.

Might be worth seeing if there is something similar?

[hotmamalovespavlova]

Sorry not sure how to link to the previous thread it's title line was
'Autistic tendencies in 2 year old girl? Or not?'

Started by 'shineoncrazydiamond'

[debs40]

Hi I think I remember it. I think you need to speak to whoever referred her and see if they know what the criteria are for referrals. If you search under the CAMHS in your area on the web you might be able to find some information too or you could ring them. Sorry, this is really frustrating for you

[hotmamalovespavlova]

Thanks debs-I will have a loook at the policies.

I took her to our gp who sent the referral am waiting on her to call me back with her opinion.

It is frustating also bloody insulting.

[hotmamalovespavlova]

Claw- I will try a gentle push first before making an official complaint, but thanks for the infor as I can now be prepared.

I hope you get the result you want

[hotmamalovespavlova]

ha ha my typing is bad sorry

[claw3]

Hi Debs,

My son was also turned down by CAMHS after being referred by a Paed 'they did not feel the referral was suitable for psychological intervention'

I would be interested in knowing what they do deem suitable, would this be available on the web?

[claw3]

Thanks Hotmama, i have been gently pushing for over 3 years now, my patience has run out, im in big bloody shove mode at the moment!

Good luck

[debs40]

There is usually a protocol for ASD assessment laid down in each area which demonstrates how they comply with the national guidelines. I found it by chance by putting in the hospital and ASD assessment.

It sets out the pathways i.e. from referral by GP to diagnosis and will indicate the criteria for ASD assessment which can depend on age and nature of referral.

The assessment process is handled by CAMHs ultimately in this area but they other psychological assistance too. You need to be clear that this was a referral for ASD assessment within the guidelines. Your GP should know.

[daisy5678]

Oh, I had this. J's behaviour was so bizarre that he was referred to a consultant paed in the child development unit here when he was 2 or 3. Paed was convinced that J had ADHD plus something else so referred him to CAMHS when he was 3. CAMHS here won't see anyone pre-5. Paed just kept pushing and pushing referral and eventually CAMHS gave in and saw him aged 4.

Good luck.

[hotmamalovespavlova]

But if they won't see a child under five how are you supposed to help them with understanding/speech delay?

[daisy5678]

Other services will see children under 5 - speech and language therapy, for example, and you can get your GP to refer to them - they are often linked to ASD assessment services. Also maybe worth getting a referral to developmental paediatrician as then you have your route into the hospital system.

[debs40]

I think that is the question you need to pursue. Different areas have different criteria on this and I don't know why there is a lack of consistency. It is usual to see a paediatrician of some sort initially (I think?) as a gateway assessment. Perhaps, your GP should have gone down that way? My GP did have to investigate the right way to refer before we got ours. If there is an arbitrary cut off before 5, then you need advice on why and suggestions about how to pursue it

[BriocheDoree]

Hi Hotmama, sorry to hear you have been rebuffed. I didn't comment on your previous thread but I read it and would certainly agree that you should get your DD's language checked out. Perhaps like GMS suggests you can get referred to SALT services.
Anyway, sending encouraging vibes!

[hotmamalovespavlova]

Brioche-I thought convincing the Gp was gonna be the hard part especially as dd was very well behaved throughout appointment.
When she calls I will ask re SALT ref.

Do you think if this is brought on her understanding will follow?

[hotmamalovespavlova]

Is there anywhere I can go independantly to have her tested and pay for it?

If so any idea of the costs involved?

[debs40]

I think having her language looked at seems a really good start and there shouldn't be any problem in getting a SALT referral if your GP is onside.

Try that as a a first step. I was told that initial appointment timescale is 16 weeks maximum so you shouldn't have to wait too long. I think keeping it NHS means that you are in the process if you need referrals on later. I think the process is not necessarily speeded up by private dx's which are not necesarily recognised from what I've read here.

Good luck!!

[hotmamalovespavlova]

Well the GP has just called and sighed as she thought this may be the outcome as there are proper routes to take as in seing the health visitor first. My health visitor is about 12!

She has said that she feels that dd is maybe too intelligent in other areas (ie logic ) she used the example of during the appointment dd was playing happily with the toys until she bored of them and then made a beeline for the sharpes box and the panic alarm on tghe wall-the only two things in the room that she really couldn't be allowed to touch and adults wouldn't ignore.

Gp felt she was doing this to attain attention from us.

I stressed that it was her extreme behaviour and understanding/speech delay that is the problem. To be told to wait as she is still very young and may just be harder work than most.

So now I have to ring the HV.

[AttilaTheMeerkat]

Oh gawd, bloody parenting courses indeed. Well they certainly have their place but it seems inappropriate here.

Surely GP can refer you to a developmental paediatrician?. I would ask why such a referral has not been made till now. Why does it have to go through the HV - this process is very long winded. I would also approach the GP to get a SALT referral.

CAMHS certainly have their place but ASD is not really their specialty.

[debs40]

I think that's not quite the case in every area though Attila as many ASD teams place specialist SCD groups (based in CAMHS) at the core of the assessment process.

I don't see what the HV can add if she has been seen by a GP unless the protocol is for an initial HV assessment before referal.

[madwomanintheattic]

very confused (haven't read the other thread)

agree with attila, surely the most appropriate thing would be for a proper developmental assessment to take place after paed referral? (apols if there is already a paed on board - if so, unclear why gp is running this - they are usually as much use as pockets on socks) - then the paed can decide which therapy is more appropriate? for very young children who are still something of a grey area and do not fit naturally into any boxes, the paed will sometimes use assessment to get an early nursery placement where ed psych and other assessment can be followed up.

dd2 had her first ed psych assessment just before her second birthday lol, as part of a cdc assessment.

i think your gp may have been barking up the wrong tree - ask for a paed referral (requesting developmental assessment).

that said - arbitrary rules (ie no under 5's) are usually really difficult to break lol. like the no respite for under 3's ss rule... it's possible, but takes perseverance, and you have to make sure you have exhausted all the other routes first.

i'd get your hv to add her voice to the general request for assessment though - however old she is. (some 12 yo's are quite useful lol)

[hotmamalovespavlova]

Madwoman- thank you for that I will bring it up with the HV and specifically ask for a Paed ref.

I wonder what duty of care they have towards my dd as if it turns out that in 3 years at the magical age of 5 she is confirmed to be on the spectrum,how can they put right that they did not listen to me now and the time lost.

I just know that something isn't the 'norm'and yet am being dismissed-surely it isn't usual to have mothers turning up saying with these concerns.

[hotmamalovespavlova]

1st part of previos thread:

DD's behaviour:

1. What appears to be a lack of understanding/comprehension. So, for example, if you ask her to get her shoes/pass you a book/get her coat etc, she genuinely will not understand the request. She just acts like she can't hear you [ nothing wrong with her hearing]and just looks right through you. It doesn't appear to be non compliance/ usual toddler awkwardness.

1. She is extremely naughty. Now, I know that all toddlers are naughty, but she seems to be on another level. She has had, from birth, a very high pitched scream. It is almost unbearably loud and I have never heard a toddler be louder than her. She was an extremely unhappy baby and cried and screamed constantly for a year or so.

1. She is very logical. From before 18 months she has been able to open stair gates, drag chairs to the front door and open the chain,climb up on high window sills etc. On the rare times my friend has taken her eys off her, she has located hair straighteners, switched them on and burnt herself/found knives in the kitchen/razor blades etc.

1. She will not go in a supermarker trolley or go around the supermarket, ever. This is not down to her being tired/hungry etc.. she screams her high pitched scream and kicks, hits and tries to bite as soon as my friend attempts to put her in the trolley. If taken in in her pushchair, she screams and cries all the way round.

5.Her speech is not good. She can say single words, no short sentences. However, her memory for songs is amazing- and she could count from about 15 months old.

1. She likes order and will stack a specific pile of books over and over again.

I know a lot of the above could be put down to a normal toddler, but both myself and my friend have quite a bit of experience of toddlers and she is very extreme. The constant high pitched scream is commented on a lot.

[TotalChaos]

how frustrating. I would push for at least a referral to a community paediatrician. also it may be worth googling and or phoning up your local parent partnership or branch of the National Autistic Society to check what the usual procedure is for assessing pre-schoolers, to see if GP was correct to refer to Pcahms. Unfortunately the procedure for assessing seems to vary from area to area, I think most of us have not had to go through cahms for assessment.