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

another possible avenue for getting help is via your DD's nursery/pre-school, they can get an area Senco to come and observe her and recommend that nursery should be doing with her.

Total- I will certainly look into that, she is not at nursery yet looking into a place in January when she is 2.6 and then she is due for 5 mornings from next Sept as a July baby.
I was trying to get help with this prior to started preschool as I know she will struggle with her delay of understanding also how on earth am I going to potty train her if she can't follow basic instuctions.

don't worry too much about the toilet training, kids with language delay can still toilet train, they realise what to do from watching us! around the house/nursery kids can take themselves when they need to, out and about you just have to keep asking and asking if they need the toilet to get a yes or no answer if they can't say "I need the toilet" yet.

that's another reason for pushing for paed and developmental assessment - once they are in the 'education' (lol) system it is much easier for professionals to make comparisons with the peer group - and another way into accessing services.

i second not worrying about toilet training by the way. i was convinced dd2 wasn't ever going to toilet train as she was non-verbal and couldn't walk. she was the easiest of the three because she found being wet so traumatic! (and indeed was dry day and night long before her older siblings)

we had a similar supermarket issue lol. when dd2 eventually became verbal (we used makaton via slt first) she was able to tell us that the lights in the supermarket hurt her eyes. so, a sensory issue which we were totally unaware of, and solved by sunglasses . in the meantime (two years lol), tesco direct became our friend.

getting into the system is the most difficult part, honestly.

i do suspect you will need your hv on side - what has she said so far? (it can also be easier to agree to the other stuff by the way - the courses and the advice, as long as the profs are supporting you and doing the referrals. that way you are not immediately seen as a 'difficult' parent. it's a pita, but it does take time before you 'earn' the right to have a view on your own child, it would appear....)
surestart offered a 'special parents' course as well, so not all 'parenting courses' are designed to teach you to suck eggs and deal with a toddler, some are at least supposed to give you some strategies to try with the most complicated of tots, whatever (if any) the eventual dx. it is worth asking about them anyway - if you appear to be genuinely seeking any help you can get for your child then all sorts of doors open - it's also a way of finding out what services other parents are accessing, and what else is around that you may find useful.

People suggested the makaton signing on the previous thread-where can I find out more about it?

I have given up with supermarkets and am now a firm believer in internet shopping it was just all too stressful for both of us.

As yet I haven't approached the HV as I believed the most direct route would be the GP.
Pchams have cc'd the letter from today onto HV and GP also dropping note to her after todays phone call.

I will make appointment to see her next week and will be taking shiney as my backup-sometimes I can get all too emotional and not get my points across, she is my calmer partner in crime.
I will again take the long list compiled for the doctor.

you can find out more at www.makaton.org or just stick on something special on cbeebies to see some signing.

sometimes you just have to prove you have ticked all the boxes and followed the appropriate channels (frustrating but true). later on, it's possible to circumvent a little (usually with the backing of a prof of some sort) but you have to work up your credentials lol. sometimes you do pick up good stuff alongside the usual advice lol.

if the hv is worth her slt she should be on your doorstep tomorrow. hope you get a route in

Thanks everyone for all the very helpful info and advice.

I always gain some much more from real people who have and are living it.

This board is great maybe GP's should be referring a perscription of MN far more informative.

I will update when I have seen HV.

small lol at worth her slt. typo but apt.

I agree ask for statutory assessment they need evidence to be able to turn it down. I would ask them to put in writing that they are satisfied your child does not have ASD and the issues are down to parenting. I bet they won't. I would ask your GP to refer you for a second opinion to a different NHS Trust, they might not but if you say I would like you to document in my notes that I have requested and you have refused, they might get nervous. The days when parents were blamed rather than believed are supposed to be behind us. Most parents have a hunch for a reason. Download a doc called "Together from the Start" and the "Early Support" docs they are govt docs re young children with suspected disabilities. Tell them your child can't afford to miss out on early intervention if they have got it wrong. Have you seen the referral letter? Was it accurate? You could ask for a copy of your child's medical records to check.

Maybe she could ask demand a second opinion , a referal to a developemental paed that is not part of CAMHS.
She must be so frustrated and angry...i know i would.
Why can't some so called experts take parents seriously! Grrr...makes me mad!

How frustrating for youur friend. I've only skimmed the thread but I am guessing there are pointers that your friend's DD has communication difficulties/lanaguage delay/difficulty following instructions etc if ASD is a possibilty.

If so I would recommend she rings the SALT (speech and language therapy) Dept herself and refer her DD directly. Depending on the area there may or may not be a long waiting list or there may or may not be a drop-in clinic.

A SALT assessment should identify the communication difficulties and give your friend extra evidence to waggle under noses.

Worth finding out if there is a local charity the helps families with children with disiblilties - they will tend to have all the details of local organisations and now how the systems work (or don't!)in her particular area.

Both CAMHS and the HV have acted poorly here to say the very least.

I would ask your friend to return to the GP and ask this person to refer her DD to the developmental paediatrician at the local hospital or child development centre. She cannot and should not accept no for an answer.

I would also be applying for a Statutory Assessment from the LEA now.

The National Autistic Society may be able to advise your friend on how to proceed as well.

just read the thread properly. I would really stress the lack of response to instructions when she contacts the SALT dept.

Whist the GP hasn't been that helpful they did at least refer to CAHMS- would your friend consider asking the GP to refer for a hearing test? It seems a common thing to be requested when there are communication difficulties.