Following autism assessment of our son we received a letter confirming diagnosis through the post.
The letter had bullet points outling strengths and weaknesses and also had other information .
However ,we did not recognise our son from the description and it seemed like some sections had been copied and pasted from a letter describing another child. This was very upsetting for us both .For example the letter stated that our son has hyperacusis and wears ear defenders, which is not the case .The letter also stated that our son has autistic siblings,whereas he only has 1 sibling, and that his dad has autism !(which is untrue).
It took us both a lot of courage to put our son up for diagnosis and we had invested a lot of emotional energy into this - only then to receive a letter that not only did not describe our son accurately but also stated that his dad was autistic! The whole point of seeking diagnosis was for others to have a better understanding of our son.Our CAMHS worker was very open and transparent when I phoned them which was appreciated. They explained to me that she had not seen the letter that had been sent out despite it being signed jointly by them and a Clinical Psychologist, and it was rightly pointed out that this shouldn't have happened and apologised . She took swift action to inform the other clinician and we were sent another version of the letter about a week later which we were pleased about (no covering note though with apology ). Our son is starting high school next year and if I had not read the letter and pointed out the mistakes, it could have led to some serious misunderstandings. I hope that school, autism outreach etc were sent the correct letter,too, and asked to discard the letter that was previously sent. I am very happy with the way the assessment was carried out and all other aspects of care . I just wanted to point this out so that other families are spared a similar experience .I do also understand that there is a lot of pressure on the CAMHS service but as a learning point it would be good if more effort could be invested in making reports more person centered and in checking over the information before it is sent out . It is not easy to be told a diagnosis and being sent a chaotic letter has not helped and it has confused and angered my husband to read that he is autistic . If the mistakes hadn't been spotted ,it could have led to some harm and /or disadvantage for our family . This is intended as constructive feedback and to explain the impact on our family .I hope it helps staff to reflect and improve the way letters are written .
"CAMHS autism diagnosis letter"
About: NHS Lothian NHS Lothian Edinburgh EH16 4SA
Posted by Rucki (as ),
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