Private diagnosis reports: amendments and who to share them with

Hi,

I joined this space years ago but haven’t posted until now.

After years of waiting for the NHS to assess my child, now a teen, I decided to seek a private assessment. The process has been positive and we recently received two diagnoses: autism and ADHD.

The reports came through a few days ago and the clinic has suggested that we read through them carefully and suggest any amendments or changes. Three reports were included: a Full Report, a Summary Report for my child, and a Summary Report for Future Supporters.

The Full Report is extremely detailed and contains a lot of very personal information. The Summary Report for Future Supporters is much briefer, positively written and outlines the types of support they may require.

I’m wondering who would normally need to see each type of report and, in the case of the Full Report, whether it generally needs to be shared in full or whether relevant sections can be shared instead.

I’m also unsure what sort of amendments or changes parents would normally look for at this stage. Obviously I’ll check for factual inaccuracies, but I’m also thinking about how things are worded, what personal information is included and how useful the report will be in the future.

For example, some of the specific examples used to illustrate traits and behaviours relate to my child’s current special interests. Those interests may change or disappear over time, while the underlying pattern or trait will remain. I’m wondering whether it would be better for a report that may be used for years to focus more on the underlying behaviour or pattern rather than particular examples that may eventually become outdated.

I’d be really interested to hear what other parents considered when reviewing their child’s reports, what kinds of amendments they requested, and how they decided which reports to share with different people.

Thanks for any experiences or advice you can share.

Parents
  • Dear NAS85134, 

    Thank you for your message and congratulations on the diagnosis for your child. I am sure other parents will be able to offer specific advice but from a school's point of view it would be helpful to share the diagnosis with the school but you do not need to share the report as it is a medical document. A meeting with the teacher and SENCo would be useful and a discussion about what support you would like to be in place would be good to detail. For example any sensory requirements or extra support such as instructions repeated or instructions broken down into small steps. 

    On our advice and guidance pages we have a section on support after diagnosis. This may help you think about any amendments. Please find the link here:

    Formal Support

    There is a interesting section quite far down about support in school. 

    I really hope something there helps.

    With very best wishes, 

    Anna Mod

  • Thank you Anna, that’s helpful. We’re actually in Scotland and my daughter is currently home educated after experiencing burnout. Her next step, when she’s ready, will likely be further education.

    I think I’m starting to separate two questions: what belongs in her complete diagnostic record, and who actually needs access to all of it.

    The Full Report captures her very well, but contains a lot of sensitive personal and family information. The Future Supporters report feels much more appropriate for sharing, but perhaps not detailed enough where substantial evidence is needed, such as further education, medical records or benefits.

    I’m now wondering whether a more detailed redacted version of the Full Report might bridge that gap. Has anyone done this, or shared only relevant sections rather than the whole report? I’d also be interested in what others amended before their reports were finalised.

    Thanks again, I really appreciate your help Blush

Reply
  • Thank you Anna, that’s helpful. We’re actually in Scotland and my daughter is currently home educated after experiencing burnout. Her next step, when she’s ready, will likely be further education.

    I think I’m starting to separate two questions: what belongs in her complete diagnostic record, and who actually needs access to all of it.

    The Full Report captures her very well, but contains a lot of sensitive personal and family information. The Future Supporters report feels much more appropriate for sharing, but perhaps not detailed enough where substantial evidence is needed, such as further education, medical records or benefits.

    I’m now wondering whether a more detailed redacted version of the Full Report might bridge that gap. Has anyone done this, or shared only relevant sections rather than the whole report? I’d also be interested in what others amended before their reports were finalised.

    Thanks again, I really appreciate your help Blush

Children
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