"Asperger's Assessment"

It took me over four decades to figure out that I have Asperger Syndrome. Four decades of not fitting anywhere, of struggling to understand things that always seem to be just out of reach, of coping with adverse reactions from others who couldn't possibly have understood why I don't do things the way everyone else does. So when the penny dropped, it was a massive relief. Finally I knew who I was.

When I told my GP, she knew straight away that I'd hit the nail on the head.

Now to access services:

• To get assistance to identify all the areas of difficulty and work out corresponding new strategies.

• To maybe get a little support to do the things I struggle to do on my own.

• To make contact with others who experience similar issues.

The referral for assesment to Adult Mental Health at Bassetlaw Hospital occurred last summer, nearly 18 months ago.

It has taken far too long, and I'm not impressed with the Quality of the Asperger's Assessment Service.

I'll list some of the problems, which I hope someone will want to tackle :

1. The name on the appointment letter is never the person you actually see. This raises expectations that you're going to see an expert, a specialist, when in fact you have to see a more junior member of staff.

2. Seeing a less qualified clinician would not necessarily be a problem, some of the most therapuetic interactions tend to source from people who aren't qualified in anything other than being able to listen and willing to help. But it seems a little odd that in a specialist subject area I can get better knowledge and understanding from friends with zero qualifications.

3. The 'assumed' clinician didn't tell me who they were or how they were qualified. Said they worked with Dr xxxx but didn't say in what capacity. They could have been the Office Cleaner for all I knew.

4. I felt they pushed drugs in an overly persistent way. Despite repeated assertions from me that I don't want powerful medication. They kept trying to get me onto strong drugs, well before finishing the assessment. How can they know what treatment to suggest if they hasn't understood what my problems were? If I had been someone less able to resist such pressure I could easily have ended up over medicated. In any case, there aren't any medications for Asperger's since it's not an illness.

5. They were very late for appointments 2 out of 5 times. Both times gave the same excuse that no-one told them I was there. Why do they not understand the definition of 'appointment'? It's when you agree to meet someone at a particular time in a particular place. I was there, why weren't they?

6. Once attended an appointment where the clinician had no memory or record of our previous appointment. Insisted I hadn't seen them for 6 months, when in truth it was half this time. It seems the notes had been lost.

7. My tests were completed a year before they got around to discussing the results with me. This has to be an unacceptable length of time. Apparently the tests aren't that difficult to score. It should only have taken maybe 10 minutes. If they had turned up to appointments on time, I could have helped them do their job.

8. When I asked for Information about Asperger Syndrome & Self-Help Groups. I was told they hadn't told me what I have yet. Obviously offended because I already knew my diagnosis. Only very insecure clinicians are threatened by Service Users having access to knowledge.

9. They only really wanted to talk about the Mental Health symptoms which were within their realm of knowledge. We talked about depression, anxiety, hoarding, OCD, paranoia. All the things I already know about. The question is; why do I have these things when there is no obvious trauma to blame? Didn't seem to want to talk about the thing I came to discuss ; Asperger Syndrome. Is this because they knew nothing about it? Why was I assigned a clinician who knew nothing about the subject at hand?

10. In one session I was 'forced' into assessing my mood on a scale that I had no understanding of. A scale of 1 to 10 between sad and happy. I explained that I had no comprehension of happiness, but they said "come on, work with me". Well I say "come on, listen to me".

11. Consistently declined to copy my GP into communications. My GP was not informed of my test results, nor my diagnosis when it eventually occurred, and was not informed of my referral to the County Asperger Service (still waiting). I thought we were supposed to be Integrated? Now, my GP practice is trying to chase up all of these things, and I'm going to have to resort to self-referring to the Council run Asperger Service. At the moment I'm making do with getting little bits of info from online facebook groups.

In the end I got the official diagnosis I needed in order to access the services I need to move forward, but I had to exercise great patience.

I didn't dare complain, because I knew this was the only available route. This person was the gatekeeper to the support I need.

I am almost into my fifth decade, and I wonder; will I finally get the right help?

This service needs to be better.

If a properly qualified and knowledgable specialist is thought too expensive, then how will you maintain the quality?

Why weren't regular Patient Reported Outcome Measures used to monitor my wellbeing during this farcical assessment process?

Why was the PALS notice board devoid of any information at all?  I would have expected at least some leaflets or posters about how to complain or give feedback.

Where are the Service User & Carer Experience forms? What happened to the Friends & Family test? I've not once been asked for my feedback on the service. Well you have it now !

Can I refer the trust to 3 documents, which could be helpful should you wish to bring the service up to a good standard :

1. The Autism Act 2009

2. The Green Light Toolkit.

3. NICE Guidance CG142 & QS51

If this is the standard of service that Notts Trust is spending it's money on then the CCGs should quite rightly be cutting the funding. In times where money is tight, we must make sure that there is no hiding place for services that just aren't fit for purpose.