What kind of support does your child with ADHD receive?

[YouFilthyAnimal]

My son was diagnosed last year and put on to meds almost immediately
And that’s it
That’s all we’ve had
We have spoken to one person at CAMHS who diagnosed him within minutes of meeting him and prescribed meds a few weeks later and now at our regular appointments all she does is check his height, weight, blood pressure, ask if he’s had any side effects of the tablets and send us on our way
He hasn’t seen an OT, behavioural therapist, SALT, literally anyone else
I don’t get any advice from her whatsoever, no ‘homework’ no ‘let’s try this for the next few weeks to see if we can help him do this’
Nothing
Ar our last appointment she wanted to increase his meds and I asked when we were going to explore other routes but she said she can’t until he’s reached ‘maximum ADHD control’ off his medication, but surely if I know better ways to help him and he also has some kind of therapy alongside the medication he will reach that quicker?!
She just won’t send him to anyone else
And I don’t want to just keep increasing and increasing the medication (which will surely have to be increased as he grows anyway so we’ll never reach ‘maximum control’) until he’s a zombie all whilst never even giving the poor kid a chance at therapy?!

Sorry that turned into quite a rant, just wondering what therapies and other help other children are getting?

Did DS not have SALT, OT and clinical psychologist &/or psychiatrist assessments as part of the EHCNA? You don’t need a normal referral and to sit on the normal waiting lists.

If DS has an EHCP you need to ask for an early review as it obviously isn’t meeting his needs. If that is the only SEP in F then it is a very poor EHCP. SALT, OT and play therapy are all educational provision and should be in F.

It’s not uncommon for DC to present differently at home and at school. It doesn’t mean the support needs to be outside of school and it doesn’t mean the problem is at home.

@JustKeepBuilding no he didn’t have assessments with anyone else, we met with the ‘ADHD lead’ at CAMHS who diagnosed him within 10 minutes of meeting him and we haven’t seen a single other professional besides the school SENCO both whilst attempting to get a referral to CAHMS and termly ever since

Thank you for the advice, I will be definitely taking this back to school

Son has autism and ADHD. We see nobody in relation to either condition! Diagnosed, meds given (as you have been) and the odd catch up as you describe.

That's it.

We don't even have an ECHP.

I’m not a parent but from personal experience of being diagnosed with ADHD and autism, I definitely found that my autism is heightened while taking the ADHD medication. There’s autistic traits that my ADHD hides, which become more prominent when I’m medicated. Definitely explore the autism diagnosis too, even if it doesn’t offer support I can personally attest to the benefit of understanding yourself and that you aren’t wrong, just wired differently. The DSM has only allowed dual diagnosis since 2013 so some health staff are still behind and don’t realise you can have both.

If DS has an EHCP he should have had an EHCNA in which the LA sought advice from:
a) the child’s parent or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child’s parent or young person reasonably requests that the local authority seek advice from.

H can include SALT, OT, psychiatrist, clinical psychologist etc.

You could request a reassessment of needs in order to seek the assessments. Then appeal if following the reassessment the LA won’t amend to include the provision you think is necessary seeking independent assessments if needed. IPSEA have a model letter you can use to request a reassessment from the LA.

Or you could ask for an early review. Then if the LA agree to an early review (unfortunately they don’t have to and there’s no right of appeal so if that happened you would need to wait for the AR or request a reassessment of needs which does have the right of appeal if refused) appeal afterwards if the provision isn’t included and seek independent assessments. IPSEA have model letter for requesting early reviews too.

If you haven’t already it’s worth reading IPSEA and SOSSEN’s websites and the SENCOP to understand EHCPs better.

@bellswithwhistles you can apply for an EHCNA yourself if you think one is necessary. On their website IPSEA have a model letter you can use.

My Ds1 is 16 now - so its a few years, but we had the opposite of you - years of trying to get diagnosed, then because he was under the anxiety and mental health part of CAMHS and not the Neurodevelopmental disorders part (not all CAMHS run in the same way) we had to literally fight to get him the meds. He actually only go the meds after having lots of interventions - none of which helped him because he was too all over the place to do the excercise - so a wasted set of art therapy sessions, anxiety sessions, anger management sessions... He would have go so much more out of them if he was on meds.

He's been on Concerta for 7 years now - and the dose hasn't really increased (27mg) even though he's tried a few times and a few alternative meds.

My advice - Get Melatonin prescribed. Really really important part of ADHD control. You need to ask for long acting Circadin to help him get to sleep and stay asleep. If you have no luck I would get it online yourself. Biovea do it. I literally don't think my family would be together and my DS would be a totally different person if he didn't have this.

Also- try reading The Explosive Child for strategies for anger and kids that don't respond to normal behaviour interventions. NONE of the standard things worked for us; especially not star charts. I'd be happy to never see one of these agin in all my life :-)

Also - have a google and see if there is a local parent group to you. In my experience parent groups can exert an influence on CAHMS, and ask for targeted things like a parent course etc. Ask on your local Facebook too - and if you are feeling active about it start one if there isn't! It can be a lifeline to see other parents in your situation. I know parents of NT kids I know just had no idea what I was going through

Mine had talking therapy (to help with emotional regulation) and then 6 monthly appointments where they check his height and weight and tell me he needs to put on weight (medication suppresses appetite and he has always been small)

No support. Not even meds as waiting list is years to even get a consultation.

However, we just manage things ourselves. We did get three post diagnosis sessions but the woman didn't have any new suggestions I'd not heard/tried before and I found quite patronising (you know what its like when you are dealing with this for many years you just learn so much and try everything, I hear you on the "sleep" advice).

I think you're going to have to research for yourself what you want/think will help and be bold and ask for it. If school don't see issues IN SCHOOL they don't really do anything.

With an EHCP the OP can secure support that must be provided whether DS appears ‘fine’ in school or not.

The local specialist school near me does lots of parent courses on different sen issues, understanding autism, managing behaviour in adhd etc etc also sen coffee mornings, my eldest asd sons mainstream school is always sending out information about these courses and they do their own sen coffee mornings can you ask the school senco? I'm just thinking if you do a course/coffee morning you might find out about other therapies that are available and get some advice, also I had to see my doctor to have my eldest referred for OT so you could ask your doctor? My 2 youngest recently started meds for adhd, their medication nurse isn't very knowledgeable about sen issues so I don't even ask her but she doesn't like increasing meds and says if we need help to try early help, apparently they can be very useful? Also fb adhd/sen groups!!!

This sounds odd. My son was diagnosed privately and has been under the care of a private psychiatrist. When he started with medication he started on a low dose and was titrated slowly (weekly) to reach maximum dose (and benefit) without experiencing unpleasant side effects. When his dose was too high he either had horrible side effects or he felt spaced out etc.

As for receiving support unfortunately we as parents have to seek this out ourselves as it’s very difficult to get and is unlikely to be offered. I would advise joining online support groups and getting as much information online as possible. The Additude website is very good. In my experience learning and understanding about my sons ADHD has been the one of the best things that has helped him especially with his emotional dysregulation.

School should have your son registered on the SEN register so by law should be providing support. Some schools are good and some are awful. Just know your rights and advocate for your child.

hope that helps

Read this please before going forward with any ADHD recommendations https://www.bbc.co.uk/news/health-65534449

FFS not the place.

We get very little support from CAMHs. Prepandemic we had a fairly brief 6 monthly review meeting. Now we don't even get that.

CAMHs will respond quickly when I ask for a medication review over the phone. Apart from that there's not much else available. Apparently a teensger who self harms, has suicidal thoughts and also severe emotional based school avoidance still doesn't meet the threshold for emotional support. 🙄 I really don't know what that threshold is but I imagine it's terrifyingly high.

I did do 2 ADHD parenting courses, pre and post diagnosis. We're you offered that? The courses don't really provide any new ideas but the comfort of meeting parents in similar situations was quite beneficial.

Unfortunately, support is extremely limited and often woefully insufficient.

In most Local Authorities, it is the SENCO who would refer for OT. Ask them if they can do a referral. Do also push more generally - they should be listening to your concerns as well as reporting their lack of concerns. OT sounds very much relevant for your child.