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Factual errors in autism diagnostic report

Ali222

Hi all,

I requested an autism diagnosis through NHS during lockdown. It took five years to finally get an assessment, this winter. Last summer, I also recieved an ADHD diagnosis privately.

I went ahead with the autism assessment, eventhough I now felt adhd explains my situation better. But after reviewing the draft report, I picked up 4 pages worth of bullet points of factual errors in the report. This included a lot of fabricated responses or false information for example: ____  was separated from his step mother and step siblings (i don't have a step mother and step siblings and no idea why they put this). Another example: he cried at the first day of nursery ( I did not say this). 

I was already concerned about having an autism diagnosis in my NHS record due to several reasons, including being uncomfortable with the amount of confidential detail the report holds. However, the amout of errors has increased my anxiety and has made me doubt the validity of the diagnosis further. Up to 10 errors, I would understand, but this was around 40 errors approx.

I sent the list of errors to the team, who amended the report, but said that the diagnosis remains the same. However, I am still concerned about the validity. Alongside that, there were supposed to be 3 assessment meetings. It was casually mentioned during the 2nd meeting, that the assessor from the first assessment didn't take any notes at all. So they basically had to ask me the same questions all over again making the appointment over 2 hours long, with information about childhood emotional abuse missing. Also, during the second meeting, the assessor mentioned that my records shared with them show an incidence of suicide attempt, which I was taken aback by as that is false as well. I contacted my GP receptionist after the appointment and checked my online record which shows no such information. That has made me confused further.

With the above in mind:

- is there any way or me to request that the diagnosis is to not be shared with the NHS? 

- is there an advocacy advice team I can access to require help with this issue?

- Can I request that they add in the report that there were 40 errors and I therefore disagree with the diagnosis validity? 

- If I get a second opinion diagnosis privately, will that replace this report and diagnosis?

- who has access to the full report? Can any GP I go to read it all if they like?

Thanks

  • in reply to Ali222

    Hi Ali I'm shocked at the lack of care that was clearly taken with your private assessment. You are more than within your rights surely, to get every single point rectified. In regards to adding it to your record I can only speak from my experience. They advised me to send the full report to my GP which I did. Nothing has changed on my NHS app but I will ask when I next have to speak to my GP for something. It was certainly the case with mine that the onus was on me to update everyone not the other way around. Hope you get it sorted.

  • in reply to Cinnabar_wing

    It's could be different here in Wales too, I was diagnosed 14 years ago and the criteria have changed sinse then.

  • in reply to Ali222

    I think the English NHS record system is different to north of the border, (when we moved up with the kids, even their red baby books were different). 

    Bumping so hopefully someone else can answer! 

  • in reply to Cinnabar_wing

    Thanks so much for the advice. I was wondering if you also know how the report is added i.e. is the report filed away by the gp, or they code autism in your medial records and it appears in your health record summary as a dignaosis and visible to for example a&e staff member or a nurse at the gp practice 

  • You need to go back to the company who did your report and complain and insist that its put right, that many errors is shocking and I think the least the company can do is corrrect the errors. They may agree to reassess you, or it may just be a problem with the computer the person writing the report was using.

  • That's very disturbing, and sounds like they have completely messed up the process. 

    Maybe make an official complaint if they aren't taking your concerns seriously with whoever did the assessment and speak to your GP about your concerns and all the false information in the report -almost sounds like they mixed up your notes with someone else, meaning they should redo it if it's isn't accurate?

    Most people going for an assessment are looking for a diagnosis to help with understanding their lives, so they probably don't expect you to query it if you got diagnosed. (I think AuDHD can present differently to either one separately, it might still be worth finding out more about how it can look different just in case? )

    I hope you can find a satisfactory outcome, as it's quite a quandary to feel misdiagnosed.