Question for members diagnosed in the UK under the NHS

Post Reply New Topic

Hi all,

The title of this thread pretty much explains my question,. I was diagnosed approx. 4 years ago by a NHS psychiatrist, who then discharged me back to my GP as there was very little else that could be done. I've had a stressful past few months and found out that a nearby group has extended their coverage area to include where I live, so I have set up a meeting for next week, I asked if there was anything I needed to bring to the meeting and they said that reports of my assessments would be helpful, though I never got anything like that at the time. Should I have gotten these at the time of diagnosis?

Any advice or experiences from people that did get diagnosed on the NHS would be appreciated,

Thank you

DC

I'm in the US--but I would assume that the assessors would give you a copy of the assessment.

am also in the UK.
parents or self have never been given any documents to keep about diagnoses of mine,although social services ID team have them on file,but a letter confirming anything are diagnosed with can be requested from the GP,as the last residential home of mine did it.

I was diagnosed in the UK under the NHS 3 months ago. As in your case, there was little followup. The psychologist was really sorry about that, but she explained me that they were no local services specialized in care for autistic adults, so all she could do was refer me to the general mental health services (where I could also self-refer on my own anyway if I wanted).

However, I did get an official report by physical mail a few weeks later. It is a 4 pages document, 80% of it is just a rather boring summary of what went on and was discussed during the assessment sessions, the end is more interesting and details the professional opinion of the psychologist and the differential diagnosis. Globally it didn't provide me with any information I didn't found out either on my own or with the psychologist during the assessment sessions, but it is an official 4 pages document by an NHS psychologist saying I am diagnosed with Aspergers.

I'm in Surrey and I was diagnosed by the NHS at the end of December 2013. A few months later I got a 20-odd page report on the findings of the assessment day. The report says that I meet all the diagnostic criteria (under DSM V) for mild Autistic Spectrum Disorder but it does not explicitly state that it is the diagnosis (although the consultant told me that it is and that it is all we will get).

I was also invited to a "Newly Diagnosed" course for adults with Autism. This was three sessions where they basically told us that the Trust doesn't have any money (!) and that that is all we are going to get. We've all been discharged by the service now and if we want to try and get any further help well will have to start the referral process again.

When I saw my GP recently he hadn't heard anything from the Autism Service so I agreed to post him a copy of my report to ensure that it actually got there.

Support groups should not need medical files!

They are always separate from the NHS. NHS provides nothing beyond the fact of diagnosis.

I was diagnosed almost ten years ago now under the NHS as a kid, so I don't know how relevant it'd be to you but my parents were given a copy of my diagnosis records, which were about eight to ten A4 pages of text in various categories about me and at the end saying that I met the criteria for a diagnosis of Asperger's syndrome. My folks recently gave me a copy for my own records, I had a good laugh reading it

I was assessed over about 15-18 hours with a psychologist (looking into other possibilities as well as aspergers) over a period of about three months, 2011-12, aged 31-32.

At the end of it I got a paper copy write up of the psychologist's notes from my assessment, including details of my WAIS stuff, and a letter confirming diagnosis. I was given a scrappily photocopied list of Autism/Aspergers/Mental Health related 'local' groups (some were Wales-wide and essentially centered on Cardiff) that I might find support there if I so chose.

There's precious little available here in terms of any sort of psychological support, be it in terms of developmental support or counselling or mental health etc. I do recall I was offered something in the way of CBT with my psychologist fr certain problems, but I don't find that method helpful.

My GP and my psychiatrist both have a copy of mine.

I was sent one but I threw it away. It was a bit lengthy and I didn't read it properly.

Maybe you should get in touch with your GP. He/she might have a copy.

My experience of groups is that they are clutching at straws (in common with most of the rest of the Autism 'industry').

Doctors do not normally send their patients multi-paged particulars of their diagnosis - they just prescribe a chemical cure (if one is available).

Auties frequently make the point that their condition is hard-wired. So, by definition, there is no treatment or cure.

Most groups that I have attended are populated by people with serious behavioural problems, who have been referred to the group by somebody else.

In the UK, I believe that we are entitled to full disclosure of our NHS records.

Thank you to everyone for taking the time to reply.

If I remember correctly, there was a gap of about a year between my appointment covering the outcomes of the assessment and diagnosis and the follow up appointment, which was due to some administrative issue. I have contacted the psychologist to see if the report was also missed due to this, though I'm not holding a lot of hope for this. Though I'm certain that the diagnosis will be filed in my medical notes somewhere as I have discussed it several times with my GP.

The follow up appointment was the same as most of you have mentioned here, that I did have Asperger's and as it was not severe and I could leave the house and hold down a job there was no support in the local area. Which is frustrating in itself as I can do these things, but it's only because of trial and error and practicing 'fitting in' that I have achieved them. I do feel with just a bit of the right kind of support I could manage a bit better, be more independent and overall work towards a happier place.

Again, thank you to everyone for sharing.

DC

DC1977,
being able to have some sort of outside life and have a job shoudnt be a reason for being refused support if someone needs it,have lived in a residential home before with a resident who had a busy week and a job in argos;she was still classed as having some challenging behaviors and twenty four hour needs though.
outreach support for example coud help a HFA do social things,go shopping etc,am not sure about scotland but do know multiple people with various disabilities who are funded purely for social reasons.

the national autistic society are in scotland and have a lot of different services that are also HFA friendly and they can directly apply for funding for on behalf.
woud recommend contacting them,and looking into their outreach or befriender services,outreach will need funding from social services and the befriender service looks to be free.
am an ex full time service user of their manchester outreach and day centre.