"CAMHS autism diagnosis letter"

About: NHS Lothian

(as a service user),

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 .
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Responses

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 2 years ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 01/03/2022 at 15:05
Published on Care Opinion at 15:05


picture of Louise Davies

Dear Rucki

Thank you for taking the time to share your experience with us via Care Opinion, I am very sorry that you have not received a response to this until now.

I am so sorry to hear that you found your son’s autism diagnosis letter to contain incorrect information. I fully appreciate that this would cause upset and frustration for you and your family and I would like to sincerely apologise for this.

I was pleased to hear that your CAMHS worker was open and honest when you spoke with them regarding this, and that you received a new and correct version of this letter as a result. It is also nice to hear that you found the assessment process and other aspects of care to be well carried out.

I would like to thank you for sharing this feedback with us and can assure you that this has been shared with the relevant management team. They have confirmed that more administration staff have been recruited to help support and free up clinical time within CAMHS. They have also advised that they are looking to introduce an audit tool for clinical documentation. This is currently being developed for inpatient areas however will be rolled out further to community teams in the near future.

Thank you again for taking the time to share your feedback with us. We are always grateful to hear from patients and families about their experiences so that we can use this to improve our services.

Best wishes

Louise

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