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"NHS Lothian Community Mental Services"

About: General practices in Lothian Leith Community Treatment Centre / Learning disabilities Royal Edinburgh Hospital / Adolescent Psychiatry

(as a parent/guardian),

1) One son (Age 17 at the time) referred to CAMHS (previously seen a couple of years ago) by GP in Nov 2019 due to instances of violence. CAMHS response was he would be over 18 before he would be seen therefore referred to Adult Community Mental Health Services. The response was a letter, addressed to him (he has dyslexia), simply saying his referral had been reviewed and he did not need their service so was being removed from the waiting list, and should go back to the GP. Fortunately, due to GP intervention he did eventually get an appointment for later this month - some 14 months after an urgent referral. In the meantime we had to first move his brother (with learning difficulties) out  for his safety and subsequently make him homeless.

2) His brother (Age 20) was seen by the eating disorders service and diagnosed with food avoidance disorder. He was subsequently referred to the learning disability service as they felt that was more appropriate. Initially the LD service rejected the referral, subsequently accepted the referral but judged his intellectual impairment was not sufficiently significant to meet their service criteria and proposed a referral back to the eating disorder service (though the LD Psych did provide a prescription for Mertazapine). Following discussion with the GP, we decided to refer to the Community Mental Health Service. Once again - the same dismissive removal from the waiting list letter, addressed directly to him (addressed to Master XXX, not Mr). In the meantime he remains seriously underweight (5'6 and 7st) and expressing suicidal thoughts.

I am a qualified health professional, I would be embarrassed if my service sent out such letters to vulnerable young adults. The service has clearly learned nothing from our GPs communication with them following the first letter. Both boys have complex needs and are falling through the gaps of services because they don't fit neatly into any service. The lack of service is bad enough but the standard of communication is just adding insult to injury.

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Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian last month
Jeannette Morrison
Head of Patient Experience,
NHS Lothian
Submitted on 27/01/2021 at 09:22
Published on Care Opinion at 09:22

Dear Jake OT,

Thank you very much for taking the time to share with us your experiences regarding your 2 sons and please accept my apologies for the delay with my response. It does sound to me as though this has been a very difficult time for everyone and I was really sorry to read what has been happening. I would like to apologise for the level of communication you have experienced, this is not as we would have liked or expected and l can only imagine that this has added to your frustrations.

I have shared your feedback with the different teams involved and please be assured they too, were sorry to read your feedback and its impact on you and your sons.

Care Opinion is a route for us to hear anonymous feedback from people who use or experience our services, however if you would like us to investigate your concerns further we would be happy to do this but would need further details from you. If do wish to pursue this option, please can you contact the Patient Experience Team by email ( or by telephone (0131 536 3370)

Once again please can l apologise for what has been a very difficult and frustrating time.

Kind regards


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