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"I'm picking up the pieces"

About: Lothian Community Services / CAMHS Community Teams

(as a parent/guardian),

My child was referred for ADHD assessment, and we were told twice he did not have ADHD, and not to continue to pursue a diagnosis, he has a diagnosis of Tourette's, but CAMHS ADHD specialists told us he had no signs of tics either.

Shortly after he had an ASD assessment through community paediatricians and we were told he did not meet criteria. I now believe that the staff involved were not following NICE (National Institute for Health and Care Excellence's) and SIGN (Scottish Intercollegiate Guidelines Network guidelines), and he actually does meet criteria, very clearly. We did a subject access request to find out what was going on, and found out since CAMHS involvement they had been focussed on investigating myself, not my disabled child. 

This had terrible implications, as it turns out school were also parent-blaming, my ASD/ADHD/Tourette's boy was horrifically discriminated against by school staff, my concerns as a parent were ignored.

On the judgement of CAMHS I had health anxiety and they implied my family was seeking a diagnosis for financial gain and in turn my children suffered (and I still am, but I'm picking up the pieces and in counselling).

When my youngest child started in primary one last year, my concerns were not taken seriously and my child was restrained on a daily basis to get him into school, instead of nurtured. We pulled him out of class and got him in a new class, he is 1.5 years into his school life and still cannot attend without a parent. 

Our experience with CAMHS South Edinburgh ADHD team has been horrific and life changing for the whole family. 

Thankfully the staff member from school who collaborated with CAMHS has left and school are working to support my children now. We have been fast tracked into CAMHS for medication as my child's Tourette's is disabling and painful for everyone in his environment now, and his ADHD is blindingly obvious, as it always has been.

He have been very fortunate to have pulled together professionals in the NHS and from other areas, a Speech & Language Therapist that specialises in autism from another NHS area, our previous brilliant neurologist who we had been under the care of for years, and my son's new neurologist and the support of Tourette Scotland who have all contributed to getting us taken seriously. 

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Responses

Response from George Ball, Business Manager, Royal Edinburgh & Associated Services, NHS Lothian about a year and a half ago
George Ball
Business Manager, Royal Edinburgh & Associated Services,
NHS Lothian
Submitted on 06/12/2023 at 11:16
Published on Care Opinion at 13:34


Dear Aut1890,

Thank you very much for taking the time to provide feedback about you and your families experience with Child & Adolescent Mental Health Services (CAMHS). I am very sorry that you have been displease with the service that has been provided.

Unfortunately, we are unable to provide a patient specific response on the Care Opinion forum and I would encourage you to contact our Patient Experience Team (PET) on feedback@nhslothian.scot.nhs.uk if you would like to raise this as a formal complaint. This will ensure there is an thorough investigation into you feedback, and we can investigate the care and treatment described in more detail.

I would like to provide you with assurance that I have passed your feedback onto the CAMHS Senior Management Team (SMT) for their attention and any processes that are described will be reviewed to identify any learning or improvements that should be taken forward.

Many Thanks,

George Ball.

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