I still have no report

I have a feeling this situation may not be unusual, I have tried to get medical records on my sons behalf from [CAHMS ] I have used the usual complaint routes, PALS, etc but to no avail.  Errors higher up the chain of command are more difficult to prove.

Ugh. Wrote letter asking for everything relating to my case and included dates. I have nothing (apart from my letter saying I'm being discharged) from my final appointment.

A friend did say that "Any records which might incriminate are "lost" when it suits." It's typical, apparently.

Back to the MP and PALS then.

This has been going on since May. Or am I really being unreasonable in my request?

I've still not read the thing. My Psychotherapist and CPN discussed it with me and I found it amusing the Psych had confused my Phobia of Peanut Butter with an allergy to Peanuts.

I dont think its ever been out of the drawer since.

Haythml said:

I didn't like mine for a long time, not a lot of us do ( other peoples opinions and Aspergers are like oil and water) 

I didn't bother to read the report as I know who I am already and because I am on the autism spectrum I didn't care enough about someone else's opinion.

Maybe you shouldn't be picking other people's posts apart, eh, Haythml?

2 weeks ago, I was promised a call back. Still nothing so I phoned again today. I was told that I could only get the report if it was requested by others. I was then told it wasn't the full report, that I hadn't been full assessed and that if I want (I need it) to be fully assessed, I have to go elsewhere. Except, they can't tell me who will assess me. Why has it taken 4 months to be told this?

Needless to say I'm extremely pissed off with the service I have received. I do not understand why each time I've spoke to someone, I've been given different stories. My GP receptionist has been more helpful than CMHT have ever been in regards to this.

I don't think you understand - I need that erport so I can prove my needs. It's all good and well saying I have Autism; but what the heck does that mean? I do not fit the stereotype and have no of my needs - that is what is needed by the benefits agency. I also need it because I am having to constantly prove to others that what my needs are.

At first you said you needed the report because you couldn't sort your benefits out without it. The report has no influence on any benefits, and the benefits assessor is not trained to understand the report. That is a need you don't have.

Then you said you wanted to know what was said about you, which is a want that you do have. I understand that very much.

I find in my situation I hear too much talk about "what benefits can I get if or now I am diagnosed?" and not about "how do I live better with this thing". 

I didn't give my GP a copy of the report, as he doesn't need it either. I gave him a copy of my diagnosis letter as a common courtesy. I didn't bother to read the report as I know who I am already and because I am on the autism spectrum I didn't care enough about someone else's opinion.

Best of luck, genuinely, but I wondered if you would consider the possibility that it could be a whole lot simpler.

It's more of a need than a want. It does seem odd that I was asked if I wanted it and it has taken almost 4 months and what seems like lies, to be told no.

I thought so, its a case of what you want, which is fine.

I hope that you get the report if you feel you need it. Just remember that there is a strong chance you will disagree with it because it is someone elses opinion and not yours. I didn't like mine for a long time, not a lot of us do ( other peoples opinions and Aspergers are like oil and water) 

On the other hand, it does have far more information than the letters I've been given. And I do want to know what was said.

Thats interesting.

I am diagnosed with Aspergers syndrome and dealt with my own situation as well as advocating for several others with Aspergers over the years.

Never did came across a situation where the full report was requested by anyone involved in any benefits decisions, but admittedly I have only advocated for other Aspies. 

The report would mean nothing to an untrained benefits assessor as it is written as professional opinion for other professionals.

But the report is far more detailed than the GP letters. That is what I need.

Now we are getting somewhere.

Sorry I misread the comment about GP's as so many people go on about their GP's wo have no relation to Aspergers.

The previous advice is right. Your Reoprt won't influence with benefits, but it is the Psychiatrist who diagnosed you who needs to write a letter not a GP.

No. CMHT did.

Did a GP do your diagnosis? 

Hi stranger,

This sounds like a really frustrating situation. You can request your medical records under the Data Protection Act but there may be limits, I'm not sure. There is a bit more information on the NHS Choices website, here:

www.nhs.uk/.../1309.aspx

It might be useful to call the NAS helpline to see if they can advise about whether they can refuse to give you your report. The number is 0808 800 4014. I hope you get a proper response soon.

philippab - mod

well, I dont see any reason they wouldn't allow you to have it,

the point in the freedom of ino act is you are entitled to access all info that is about you, you can ask at any time to see any rercords about you, I would think especially ones that you have been told you CAN access

so as crystal says I would ask for it again, and if they refuse ask why, the specific reason, who has made this decision and is this supported by the frredom of info act and why a socicitor is being cited as the only way to get it if you are entiteld to have  it due to  the freedom of info act

or research it yourself, what kind of info you are entitled to, and go in there already knowing the answers, if you go in and KNOW you are definitely entitled to it, there's not much they can do, except what they are doing, giving you the run around

form what i can tell of reading some of the info on the freedom of info act the only real reason they have to refuse you info is if it is in public intrest to withold it, given that your disabiloity and info can be of benefit to you and employers i am not seeing a reason for them to withold it

or , if the cost is too high for them to pay to have it copied and sent, and that sounds about right for bureacrats, its all about the money,

it says on this site that you wont be able to get ALL info about you because it would cost too much, but as you dont want all info you should have no problem, you just want this one thing, and that is on your side, i wouldnt ask for everything, otherwise they have a good reason to refuse you

and you may be asked to pay a fee for the report anything from £10 to 50 apparantly

Have you considered asking for it under the Freedom of Information act?

I spoke to someone this morning and have been told I am not allowed it. They've not given any reason. (there are reasons why they can refuse) I have been told I can get it if and only if, it's requested by my solicitor.

I have no problem with my GP writing me letters; but that's no good when I need the letter now and not next week.

is there any way you can speak to the person who either said you can have a report or who disagnosed you?

i think getting a face to face meeting with someone will help too, rather than over the phone as the system does tend to send you from one person to the other, passing the buck, where as face to face they cant do it as much

it wouldn't surprise me if they had stopped these reports, they stopped doing most other things like doctors letters, sick notes etc etc, they have made the system as bureacratic as possible 

but to be honest, if your gp is still happy to write you those letters, then you have soemthing, they dont do that either in most places now

really all you can do is explain you have autism to people and what that means, and if its official get the doctor, or person who disagnosed you to support that

even that letter saying you have asd is enough to show it 'officially' despite it being a really lazy badly written one