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"The struggles and diagnosis of my 19 year old daughter."

About: Neurodevelopmental Specialist Service / Adult Attention Deficit Hyperactivity Disorder (ADHD) Service

(as a parent/guardian),

my daughter has always struggled - at school which she had to leave at 14 because the school was not able to meet her needs. then at College. She has been physically ill for a long time, but when symptoms of this began to ease, she did not feel better in herself and her anxiety got worse, with panic attacks, meltdowns, tics. This was all made worse by the pandemic situation.

Our GP referred her for counselling which helped a bit and stopped her self harming - but then her dad heard a radio programme about ADHD in women and girls and thought it sounded like our daughter. The GP referred her to the Neurodevelopmental Specialist Service/Adult ADHD Service - and apart from the waiting times -they were brilliant. The initial assessment made us think about Autism as well and when we researched this - it really rang a lot of bells.

Our daughter is getting ready to go to university and we needed an assessment urgently for DSA and student support reasons, so we paid for a private Autism assessment and she has been diagnosed with Autism. The follow up ADHD assessment also led to a diagnosis of ADHD and there was another appointment a month later with lots of recommendations for further support. This has been a life changing experience for all of us and my daughter will now hopefully get more of the support she needs at University and in the future. She can start to understand and manage herself and her symptoms better.

The service is brilliant and the staff caring, supportive and they really listen. The official letters could be better and it would be brilliant if there was a way of contacting the service between appointments and if waiting times were not as long. But the service is excellent and much needed.

Responses

Response from Jackie Dziewanowska, Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate, nottinghamshire healthcare NHS trust 2 weeks ago
Jackie Dziewanowska
Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate,
nottinghamshire healthcare NHS trust
Submitted on 06/09/2021 at 14:47
Published on Care Opinion at 15:17


Hi

Many thanks for your feedback we are always grateful to hear the views of service users and family. We will of course use your feedback to review our processes. So glad the diagnosis has really helped.

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Response from Alinda Gillott, Clinical Psychologist, IDD Psychologists, Nottinghamshire Healthcare NHS Foundation Trust 2 weeks ago
Alinda Gillott
Clinical Psychologist, IDD Psychologists,
Nottinghamshire Healthcare NHS Foundation Trust
Submitted on 06/09/2021 at 17:57
Published on Care Opinion on 08/09/2021 at 11:05


picture of Alinda Gillott

Thank you for your feedback. We are pleased you have had a positive experience with NeSS and hope that the diagnoses will be helpful moving forward. Please do contact me directly if you have any more specific feedback on our letters. We are open to suggestions of how we can improve these. We appreciate the impact our waiting times can have, and are continually reviewing our processes. We are developing further resources to support people on our waiting list. Whilst on the waiting list we are available for contact if needed, but we perhaps need to make that more explicit in our information about the Service. Thank you again for your feedback.

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