Getting a diagnosis in the South East, UK

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Hi Everyone

This is my first post ever. I am in my mid-thirties and self-diagnosed just over a year ago.

I want to get an official diagnosis (AS) - this is incredibly important to me. Apologies if I am not sharing too much as yet, I am finding it difficult to post on the forum.

Is there anyone out there who has experience/knowledge of getting a diagnosis in Sussex?

Many thanks

Sorry if I posted this in the wrong place to start with!

i have no experience to share as I do not have a diagnosis yet, but I live in Sussex too. Right now I'm on a waiting list to be seen at Brighton neurobehavioural clinic for assessment

When i had my diagnosis at age 20/21 (not sure which), I was referred from my GP in Hampshire to Maudsley Hospital in the South East of London.

Traveled up there on the train for the day, and came home diagnosed.

Speak with your GP imo, they're probably best suited for identifying the best place to refer you to.

I got diagnosis in Beccles/Lowestoft area of the South East UK, wasnt easy.
Had to see GP twice, then another GP twice, then a mental health link worker, then another link worker with a pyschiatrist, then the pyschiatrist, and then i got a letter (phew!).

Havent had much happen since then tho - been kinda given a pat on teh back "congrats your an Aspie, you have ADD too - now off you go!".

I'm trying to get a diagnosis in the South-East at the moment. I think the first thing to do is find out whether your PCT actually has diagnostic services in place. A friend of mine was able to download some information from my PCTs website that stated my local PCT has no autism diagnostic service for adults. This friend also contacted the National Autistic Society and they sent a list of all diagnosticians who work near where I live. I then got my GP to try to refer me out-of-borough to one of these diagnosticians, which the PCT should allow if they do not provide the service themselves. Last time I saw my GP he was still waiting to hear back from the PCT about the referral.

Having talked a bit with my mother about my diagnosis, seems it actually took 9 months for the appointment to roll round, and then another 6 months for the actual report from the appointment to appear.

Granted this was a while ago now, NHS might of changed.

Hi, after seeing a therapist about O.C.D. I was informed that the N.H.S. is currently reluctant to diagnose anyone with a psychological condition. (I would imagine probably due to funding). The first step I was told was to visit a G.P. for a referral to see a mental health professional. I have read articles on other forums which seem to suggest that the whole process can take quite some time and effort.
For this reason I have decided to self fund a visit to a private clinic where I hope that they will give me some form of formal diagnosis or at least tell me what exactly I have (O.C.D./Aspergers/who knows).
I am also of the understanding that in many cases a private diagnosis is not accepted when seeking government assistance/treatment on the N.H.S.
To be honest though this does not bother me in the slightest as I am just looking for answers as to why life has been this way and I do not want help from the same system that simply labelled me as a problem child in school. I would be interested in hearing from anyone of a similar age (I'm 32) as I think that we must have been among the last school leavers before many conditions started being detected in kids whilst they were still in school. Also I will just add that I sympathise with the many in later generations who may have lived with social stigma their whole lives when public awareness was not what it is today.

Peace

If you are in West Sussex, Bettina Stott is responsible for undertaking assessments on-behalf of Sussex Partnership NHS Foundation Trust at: Arun House, Liverpool Gardens, WORTHING. BN11 1RY. 01903 843 530.

In East Sussex and Brighton & Hove, they (were) undertaken at: Aldrington House, 35 New Church Road, HOVE. BN3 4AG. 01273 778 353. I know the WS situation is still the same, but unsure of ES.

However, I will warn you, when I was a [West] Sussex resident, it took 6 months, for Sussex Partnership to entertain an assessment, and, within one week of moving back to Bexley London Borough (for personal reasons), after I self-referred to Oxleas NHS Foundation Trust (our local MH & LD service), and they sorted it.

I am afraid it's all a bit backwards in Sussex: approach GP re-query ASC; GP sends you to the CMHT, who then refer to Worthing/Hove. As opposed to the GP directly sending you to Worthing/Hove for a screen/assessmnt.

Last edited by 12341234 on 04 Feb 2013, 3:23 pm, edited 1 time in total.

With the Autism Act 2009, NHS Trusts should be "more pro-active" in Guardian-speak, but really, they're not, except, perhaps, that in the large conurbations, they are sending more possibles through to be certified. I had a lengthy discussion with the MH Commissioner for Bexley and she was most helpful, and stated that due to the AA 2009, they are starting to get to grips with it.

Hi XeniaPlanet!

"South East" is a rather large area - do you know which Primary Care Trust you belong to? I can give you advice for Bucks PCT, but other areas I can' t really help at all. So, if Buckinghamshire is where you happen to live, what you need to do is to see your GP. Ask for a DOUBLE appointment, and make sure that you only talk about why you need an official diagnosis - all this is crucial, my friend.

Before you get to the GP's, you need to have answered satisfactorily for yourself: what's wrong? What kind of problems am I facing, that a diagnosis will help with? I guess this sounds like I'm attacking you - I don't mean anything against you personally - but I am absolutely certain that if you've got a job, a girlfriend, lots of friends and contacts you wouldn't be given a referral whatever you say to the GP. The reason for this is that having a diagnosis entitles you to access some very expensive support services - like other posters have said, they wouldn't like someone with all those things I mentioned going for them to be able to access that kind of help. So some kind of idea about what that is would be a good thing. Are any of these things true?

1) I have no idea regarding my identity - even though I have a job, friends, activities I regularly take part in, this does not help me say who I am or why I do these things.

2) I have no job even though I have made lots of applications and don't understand why

3) No friends, or lost touch with them long ago

4) Don't have any activities I take part in with others

5) Anything else you can think of.


So once you've got over that hurdle, ask to be referred to Mr Farouk Okai (pronounced Och-Aye), Consultant Psychiatrist at the Campbell Centre, Milton Keynes NHS Foundation Trust Hospital, who is qualified to adminster the Diagnostic Instrument for Social and Communication disOrders (called DISCO for short). It would be helpful if your mother and father were on hand to answer questions about when you were a baby - but don't worry if you don't want them involved, a diagnosis can still be achieved without this.

Once you get to there, I can assure you that Dr Okai will give you a straight answer - he's good. Good luck with getting a diagnosis, and if at first you don't succeed, keep trying!

Hi all

This may be of interest to people in West Sussex - I'm part of Asperger's Voice Self-Advocacy Group in Burgess Hill, and at our meeting next Thursday (25th July 2013) we have a guest speaker - Bettina Stott from the Autism Spectrum Conditions Service, who, as 12341234 said, undertakes ASC assessments on-behalf of Sussex Partnership Trust.

Bettina will be coming to find out more about the self-advocacy group, but also to talk to us about her assessment work. The group is free to join and meetings are free to attend - all welcome, so if you wish to come and hear more about the assessment process, please get in touch. More info at: Asperger's Voice.

Becky

Hello Becky, I would suggest you make a new thread about this as the original post is a few months old now.

Ok thanks, I'll do that!