Thyroid UK to the rescue

Hi everyone,

When i first joined Thyroid uk it was to help with my thyroid condition, since then many members have helped me with a whole lot more.

I posted a while ago that i was having difficulty getting support for my 17 year old son who had Aspergers, severe anxiety and OCD. He never leaves the house because his anxiety is so acute.

Despite going through all the channels to get help, including social care, mental health team, my MP an so on i still cant get a full assessment of needs from social care. My son has had a assessment from them but was not inclusive of his full needs and the social worker referred him to Learning dissabilities. It came as no suprise that he did not meet their criteria.

The whole process has been crazy, not one person has any idea what another person is doing, or what another agency actually does or does not do. I will battle on with this but in the meantime, Does anyone know what department of social care would beable to do an assessment of needs, taking into account that hes 17 years old.

The other question i have is ...does anyone know of any education provision at home funded by the council?

They seem simple enough questions i know,..but not one person can answer them.

Thanks

Christine

10 Replies

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  • Am wondering if it would be worth contacting Dr Natasha Campbell-McBride. She wrote the GAPS book - Gut and Psychology Syndrome. She has a Clinic - also a website. She wrote the book ( which I have read ) after successfully treating her son when he was young. He was suffering with Autism. Maybe she has some ideas about what is on offer out there for your son. This is a shot in the dark - but you never know.

    Do hope you find something suitable soon....

  • Thanks.....Iv not heard of the author but i have heard of the connection between the gut and Autism and Thyroid.

    When im thinking straight i will look into it, my heads all over the place...

    Thanks

    Christine

  • doctor-natasha.com/

    ..for when you are ready.....

  • Thank you

  • Hi Christine, does your son have a Full Statement of Educational Needs? I think it is your right to insist upon one. He should have a Social Worker assigned to him to help you deal with everything, but there are always cutbacks on funding, passing the buck, etc. Maybe try and get something sorted before he turns 18, as then you are dealing with Adult Social Care which (in my area) is terribly under-funded. Apologies if you already know all this, It's been a while since we took on Social Services/local Council/Learning Disabilities, I know how frustrating it can be!

  • No statement of education needs. Can you get them at 17 also would he still meet the criteria if he went to school...for most of those school years he didnt have many problems.

    The social workers assesment concentrated soly on his anxiety and the fact that he is unable to leave the house.

    Aspergerrs, anxiety and OCD impact on day to day living which was excluded.

    Thanks for our advice

    Christine

  • Boy did this ring home with me, I've been having similar problems with my son. He had two appointments months apart so much so we though they'd forgotten him! He'd been hearing voices had social anxiety and was in a terrible state. They thought Asp/Aut syndrome but he is yet to receive a diagnosis, it had been going on for almost a year. We realised it was cut backs from the government who has almost pulled the plug on finances for mental health. Then I got in touch with the Tory candidate for our area who emails every Friday with updates for all that is going on. He was the one who finally helped and my son has an appointment next month, and also regular payments as he was getting nothing. I would strongly suggest you find out who the candidates are for your area and ask them for help. It looks good for them you see to help people, they get in touch with others higher up and get themselves noticed.

  • I contacted the local MP and his only intervention was to conact social services....i made the first social care referral and they came out to do an assessment and told me it was the wrong department. They passed it onto learning dissabilites and again wrong department. I wanted a full assessment so that he could get direct payments and we could purchase services such as befriending as hes not leaving the house at all.

    Can i ask you who what department did the assessment.

    I dont know about you but im so stressed with it all....ringing people, they dont ring back, no-one working together and the situation only getting worse.

    My son got his diagnosis only in march from a clinical psychologist and even wth the AS diagnosis there are so many other things going on.

    Why do we need to be trawling a thyroid site to get help..its crazy

    Thanks

    Christine

  • Yes I've heard MP's are useless always passing the buck. From what I've heard once someone has had a diagnosis they should be able to get some sort of financial help. Instead of social services if I were you I'd ring your local council or go and see them and see what help you can get for your son and also ask about local candidates in your area. If this doesn't work try ringing Citizens Advice.

    Yes we were tearing our hair out as well and then on the weekly emails from the Tory candidate - sent to most where we live (I noticed an email address and a phone number so emailed him) He was very sympathetic when I laid everything out telling him honestly what was going on - or not in our case no help at all. We were then in regular correspondence for a few days. I was lucky he was really nice and rare very helpful making it clear he would do all he could. All I know is a few days later my son got an appointment finally for a diagnosis and then money which he gets on a weekly basis - far too much of a coincidence it must have been the candidate that helped bring it about as he had no help like you and your son for months and months.

    The department he saw was first Wavely House and then the local Health and Social Care Unit, he was seen by a psychiatrist at both places both appointments were a long time coming. I heard the reason for the delay in diagnosis is because as soon as someone is diagnosed they can then make a financial claim for help so the government have put in place all the delays i.e. so they don't have to pay out for anyone with mental health problems.

    As a matter of interest did your son hear voices? mine still does they say it is a symptom of Asp.

    The cut backs in mental health have been very cruel - this government have cut back on so many things while giving billions to the EU and foreign aid sickening.

    I hope you get some help soon, I got very stressed about everything did me no good so try not too just grit your teeth and stand firm no other way.

    Don't give up and let me know how you get on. My father-in-law always use to say - make a bloody nuisance of yourself and I've learnt that and so should you, getting help is a battle.

  • I dont think it will be possible to get an SEN at age 17, however the National Autististic society should be able to offer advise and possibly assistance with getting the social services to do a proper assesment

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