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"I have still not had a clear explanation from anyone"

About: Intellectual Developmental Disabilities /Learning Disability Services - Community / Neurodevelopmental Specialist Service

(as a service user),

I was given an appointment with this service without any information about what the appointment was for. I telephoned and was told that the appointment would be to initiate ADHD medication. I was also told it was possible for this to be on teams (this information was not in the letter).

The initial appointment lasted 10 minutes and effectively consisted of the clinician telling me that they didn't have my diagnosis on file. While attempting to look for it, I asked why this had not been requested from me prior to the call when it would be less stressful. The clinician told me they had requested it from my GP (which I think is not true) and that if I couldn't find the diagnosis they could always discharge me.

With all this stress, as an autistic person I began to have a meltdown. At which point, the clinician told me they would have to end the call as I was getting distressed.

I sent the diagnosis (obtained under right to choose) and heard nothing for over a week, in spite of chasing. I then got an email telling me I was being discharged as my diagnosis report did not meet their criteria. I have still not had a clear explanation from anyone as to why my diagnosis report was insufficient.

I have a 2nd private diagnosis and that is also deemed unacceptable and no one can tell me why,

Despite having been on the waiting list for medication since November 2023, this waiting time does not count for an assessment for some reason and I have been told my GP must refer me and I must start the waiting list again  - this is now 36 months long.

I first joined the NeSS waiting list in November 2021 and came off to go on the NHS right to choose list. The right to choose provider has been accepted by the NHS as able to provide an assessment and it seems that NeSS is not only applying an arbitrarily different standard (which they cannot explain to me) but also they are ignoring all of the time I have already waited.

I feel there is no help for my mental health in the meantime as anti-depressants don't work and have many side effects,

This whole interaction has left me suicidal and it feels like there is absolute no support available to me in this crisis.

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Responses

Response from Stephen Hall, Team Leader, Rushcliffe Local Mental Health Team (LMHT), (Adult Mental Health Services - Community County 15 months ago
Stephen Hall
Team Leader, Rushcliffe Local Mental Health Team (LMHT),
(Adult Mental Health Services - Community County
Submitted on 01/05/2024 at 11:17
Published on Care Opinion at 11:47


Hello coinkx88.

I was very sorry to hear of your negative experience and would like to thank you for your feedback. Please do contact me on 0115 9455990 if you would like to discuss this with me. Kind Regards

Stephen Hall

Team Leader

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Update posted by coinkx88 (a service user)

You know perfectly well that I cannot make phone calls as I have told you and your team many times, so this is just basically trolling me at this point.

Response from Jackie Dziewanowska, Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate, nottinghamshire healthcare NHS trust 15 months ago
Jackie Dziewanowska
Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate,
nottinghamshire healthcare NHS trust
Submitted on 01/05/2024 at 16:39
Published on Care Opinion on 02/05/2024 at 08:24


Hi

Thankyou for providing this feedback. If you would like to contact the NeSS service on e mail providing your details then I would be more than happy to discuss this further and hopefully answer your questions.

NeSS@nottshc.nhs.uk

Jackie

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