Psychiatrist with Down Syndrome experience - Mencap


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Psychiatrist with Down Syndrome experience

tomvamos profile image

Hi there, my 17 year old daughter with Down Syndrome has been struggling with anxiety and associated symptoms - predominantly OCD and getting 'stuck'. This has been going on for nearly 2 years.

Recently she has become pretty much lost in her own world predominantly clearing her throat loudly and repeating the same phrase every couple of minutes or so.

She's been on the lowest dose of Setraline for some time and I think this needs some consideration but CAMHS are fairly ineffective and hard to get hold of. I appreciate the pressure they are under of course.

My question: does anyone know of a UK (Hampshire ideally) psychiatrist with Down Syndrome experience? We've talked to the DSA and they've been helpful but unable to suggest anyone.

Any suggestions gratefully received.

Thanks, Tom

2 Replies

hi @tomvamos im not a carer/parent but i have classic autism and LD and woud have recommended being refered to the CLDT specialists but realise some problems with that-your daughter is 17 and an annoying thing i find about many CLDT psychologists is they use CBT which can be useless for many people with LD (ive been told its because CBT is cheaper) and will only work on 3 points that make issues for you which is fine if CBT works for you and you dont have many issues-it doesnt for me or many others with autism and/or LD,lots of us have a bit more going on than that.

i do know a learning disability counselling therapy charity who might be of some help-they work with all ages from what i know and at the very least with being able to signpost you-theyre called respect for all and although you can be funded to use their service by the NHS and they work within a load of manchester boroughs- they also work privately,but....i actually speak to my therapist on monday-do you want me to ask him if theyre able to help or if he knows any orgs that coud help you both in Hampshire?

theyre very accomodating with different needs.

ive been doing all my sessions remotely via zoom because of the pandemic,i was funded 12 weekly sessions originally and because i communicate with AAC/proloquo2go on my ipad my sessions are longer than other peoples as well,my therapist at least is an amazing guy.

i apologise tomvamos for the size of my post,ihave a lot of short term and working memory damage caused by lifelong epilepsy,so i can end up forgetting with each sentance.

i am very sorry i hope its readable.

tomvamos profile image
tomvamos in reply to LDAutie

Hi LDAutie, thank you for taking the time to reply. You've given me some useful information and I'll investigate your suggestions further. I wouldn't want you to waste your time with your therapist on my questions but thank you for the offer. No problem with the size of the reply which is perfectly readable, I'm grateful that you took the time to do so.

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