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SN children

In Wales - refused assessment for ADHD

20 replies

towicymru · 15/05/2013 20:30

New thread to try and see if anyone from Wales has advise (in case it differs to England):

DS2 started reception in September. He has had trouble settling in as he finds it difficult to sit still, stay in one place etc. He has always had more energy than any other child (think Zebedee on speed!) but that was DS2!! Main issue is that he just doesn't listen. Not even sure if he hears most of the time (no problem with hearing though). Worked with his (lovely & very experienced) teacher who says she has tried all the tricks in the book but is at a loss. She says he is a bright boy but it is hard to engage him as his mind is always wandering elsewhere/2 steps ahead etc. She also says that he always has to be touching/stroking something (not sure of the relevance but she mentions it every time we speak!) and that he is probably the most single minded child she has taught. At parents evening in March she stated that she would be happy for him to be observed in class and that the quickest way to achieve this is to have him referred by GP.

Took him to GP. DS2 was being typical DS2 and after I had said that we had come to see her as his teacher thought he needed to be observed in class she said she could see why and that he ought to be looked at for ADHD so referred us on to the children's centre.

It is now 6 weeks later and I chased the children's centre as I had not heard anything. They said they had not had the referral so I called GP surgery who faxed it over. Followed up this morning. Yes they now have the referral but they have a lot on and are behind and don't think DS2 needs to be seen so will be writing back to the GP to say that they won't see him.

I've booked an appointment to see our GP next week. I am struggling with DS behaviour as it is getting worse not better (was hoping it was just immaturity - still can be I know). I'm not desperate to medicate DS2 but would like some help/advice/support on how to manage him. At the moment it feels like the whole family revolves around him and where he is on any given time/day.

I'm going to keep a diary of behaviour etc for the next week to take to the GP (will now probably have an angel on my hands!) but is there anything else I can do to try and get them to take me seriously?

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Ineedmorepatience · 16/05/2013 08:20

Aaahh, ok that didnt quite work as I expexted it to Sad

Keep bumping the post for a couple of days because I know there are some welsh mums on here.

I hope you get some help soon Smile

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FreshWest · 16/05/2013 10:39

I would certainly question why the children's centre feel he doesn't need to be seen when they haven't laid eyes on him? His teacher, who sees him every day and GP, who has seen him, feel that he does need to be seen.
I wouldn't let them use the fact that they are behind (not your ds fault) and have a lot on (also not your ds fault) as an excuse not to assess him.
I am in Wales but not sure about your area, could you be referred to a paed? Or is that what the children's centre is?
Dd was assessed for ADHD and paed, school and us all had to fill in a questionnaire (Conners) and dx was based on that.
I'm sorry I don't have advice on how to handle behaviours as our family dynamic is probably not the same as dd is an only child, BUT I would really not take no for an answer from the centre.

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OddSockMonster · 16/05/2013 10:43

I don't know how it differs in Wales but we have an appt next month for DS1 for possible ADD - we found the thing that really helped was a letter written by the SENCO at school, detailing his behaviour in class etc. This was then attached to the GP's referral.

Is this something your school could do to support you?

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Ogg · 16/05/2013 11:11

Wales here to, I think probably just general lack of money and everything is being put off and stretched out. Think Letter from Senco is a great idea!

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towicymru · 16/05/2013 12:23

Thanks all. The Children's centre is at the hospital. They have it all under one roof as children with SN often require input from more than one department (becoming an expert - DS1 is under assessment for dyspraxia!).

I will speak to his teacher and see what she says. SNECO not involved at present although I know class teacher has spoken to her which is where the advice of going to GP came from. Hopefully if I can get a letter from the school it might help!!

I was thinking about possibly getting a private assessment done to try and support our case but not sure who I would need to get to do the private assessment or whether it would do any good (will also need to convince DH as it's not really in our budget!).

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MareeeyaDoloures · 16/05/2013 14:23

Could you try and get him a dyspraxia assessment instead? OT's can't diagnose ADHD, but their sensory modulation stuff often helps make it a good bit easier to live with.

Also, he'll then have a hospital file full of 'ds2 wrecked my room', 'ds2 ran away' and the next 'who will we bother seeing' meeting might actually have someone in it that has Shock personally met your ds.

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towicymru · 16/05/2013 15:06

I might have to have that as a back up plan Mareey! Hate wasting people's time - I know how long we had to wait for DS1 to get this appointment!!

My plan of action is to speak to DS teacher & see if they can help, speak to GP next week & investigate a private assessment/costs.

My friend said they are probably trying to fob me off to see if he will 'grow out of it'. I have a feeling I know where DS gets his stubbornness from... Grin

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Julezboo · 16/05/2013 17:29

Where in Wales are you? Xx

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Julezboo · 16/05/2013 17:35

I am in Wales. Is there another hospital you could ask to be referred too? My ds (6) has severe ADHD and although its been a battle we are finally getting there x

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towicymru · 17/05/2013 17:51

We are in Cardiff. Not sure if there is anywhere else for us to be referred to. Not sure how much help we would get anyway. DS1 had an OT assessment for dyspraxia today. He scored in the bottom 9% for his balance and coordination & we've been told he is being discharged and they will send some information leaflets for us to follow at home!

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Julezboo · 17/05/2013 21:52

Royal Glamorgan hospital is good. I'm in Bridgend and never go to pow! Had my babies in Cardiff and royal glam x might be worth asking your gp,

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MareeeyaDoloures · 17/05/2013 22:34

This centre is a bit outside Cardiff but worth the trip.

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towicymru · 19/05/2013 20:58

Thanks Julez. Will ask GP next week about Royal Glam.

Mareey - centre no longer does under 16's which is a shame. Might contact them anyway to see if they can recommend somewhere!

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MareeeyaDoloures · 20/05/2013 19:25

I didn't know that they'd stopped doing DC. what a pity.

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towicymru · 29/05/2013 12:32

Update - GP was furious they were not seeing DS and was going to phone them to din out whats going on. GP 100% believes DS needs to be seen and will fight for us! Wtach this space...

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towicymru · 22/05/2014 12:27

Another update - GP wrote to CAMHS to say she really did think he needed to be seen. CAMHS then referred us to Barnardo's who visited and told us that this was a waste of their time as it was clearly not a parenting issue and that DS2 definately needed to be seen by CAMHS. We have our 1st appointment this afternoon so wanted to say to people who suspect they might need an assessment to start the process as soon as you have suspicions. If your child 'grows out of it' then you can decline the appointment. I'm glad I didn't wait!!

Not sure what this afternoons appointment will consist of but am so relieved that we are a step further ahead.

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PolterGoose · 22/05/2014 13:09

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towicymru · 23/05/2014 14:36

Yesterday went well. Met 2 psychiatrists who observed DS2 and asked lots of questions. They said that they need to send out the Connors questionnaire to us & school but from what they had observed it was very likely we would be given a diagnosis of ADHD at our next appointment unless school said the opposite of what we said (not likely as have been working with the school on this). They also said that they would prescribe medication with the diagnosis if we were happy to go this route.

Feel so pleased that we are now able to get help for ds2 but am having a wobble re the medication. Can anyone share their medication stories?

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PolterGoose · 23/05/2014 15:49

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towicymru · 23/05/2014 16:15

Thanks Polter. Will do x

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