What help for 16+ children

[Runningtokeepstill]

My ds, 16, has missed a lot of education, he has hypermobility syndrome, chronic pain syndrome, pain amplification syndrome and has developed anxiety over the years since the pain syndromes started when he was 9.

No-one is very interested in the hypermobility side as he's not very bendy. It's the pain syndromes that have caused his problems in getting into school. Pain is now triggered by anxiety, causing absence, causing more anxiety. He's in a vicious cycle. There are no pain services for under 18's locally and CAMHS won't treat his anxiety as there is a "physical component" which they don't feel equipped to address.

I complained last year to our NHS commissioning body as they recognise the need for pain services for adults but not children. Their response was to tell me they don't have a service for children (duh!) but that ds could be seen by CAMHS (no, they won't see him) and children's physio (no, they won't see him either due to the "psychological component") and that he could go back to paediatrics. Well, he did that but only for the 3 months until he turned 16. He's now discharged. There's only the GP left who hasn't closed her door and there isn't anything different she can suggest.

I think the main problem is the anxiety, and that it is fuelling everything else. He's in danger of going backwards again as he's currently having a huge pain flare up caused, it would seem, by anxiety around starting college and if this continues he'll lose his college place. From what the local NHS is saying he's now stuck in a total wilderness for another 2 years.

He attended an out of the area appointment for assessment regarding his pain, but they haven't really helped and seem to think he might have ASC. I really don't think they are right and believe they are looking at his anxiety and drawing the wrong conclusions. Our GP is now referring him back to paediatrics for a consideration of an ASC diagnosis as apparently they'll do that even though he is 16. But even if he was diagnosed, which I doubt, I cannot see this will help.

Has anyone got any ideas of what I can do next? The only way forward I can see is to try to get private psychological help.

Sorry I don't have any practical suggestions, but have you tried the Hypermobility Association - hypermobility.org/ ?

If the NHS is in effect refusing to provide any treatment because different departments are passing the buck, I wonder whether it's worth getting legal advice? DS would probably qualify for legal aid. You could try Irwin Mitchell.

Thanks for the reply and suggestions. I do post on the hypermobility syndrome website sometimes but it's very quiet on the parenting board at the moment. Also as the chronic pain syndrome is the dominant problem rather than hypermobility, there don't seem to be many people posting with anything similar.

I'm not sure legal action would move matters forward as the different services say they don't have the expertise to help ds and I think this is true. I could get him seen again by CAMHS without legal action but they still wouldn't know what to do. He's too old for the children's physio service (who have some training in hypermobility), but it may be that he could see adult physios. That's something I am considering although previous experience tells me their understanding of hypermobility syndrome isn't great.

What I'd like to know is if anyone with a 16 -18 year old has managed to find any useful support for anxiety outside of CAMHS. And also if anyone diagnosed with ASC at a similar age (although I still don't think it's likely in his case) got any support once diagnosed.