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"Aspergers Service"

About: Highbury Hospital

(as a service user),

About a year ago after a conversation with my parents, I went to my GP and asked about the possibility that I was in some way autistic, after realising I have many of the symptoms of Aspergers. I was told there was no service for autistic adults in Nottingham- but was then referred to the Aspergers Service at Highbury Hospital. I had to wait until September to be seen (which I was okay with) and when I went a lady collected some information and then told me the wait for m assessment would be six months. I was stunned at the wait but there was little I could do about it so I said nothing.

I was formally diagnosed with Aspergers in Feburary (after a suicide attempt triggered the crisis team to speak to the Aspergers Service) and handed a booklet which I was told would help me to understand the condition better. I was also advised not to read up too much about the condition on the internet because 'there is a lot of crap out there'. I was then told I would be invited to a series of workshops where I would meet newly diagnosed individuals and gain somee coping strategies. Both myself and my parents were led to believe that the workshops would happen within a few weeks.

They did not. I was told I would not be seen till June and when I expressed frustration with that, I was then told it would be April, although they thought it was best if I was left to 'sit with' my condition for a while. The booklet I was handed turned out to be more for people who suspected they had Aspergers rather than for those who were recently diagnosed. And the workshops turned out to be just the one. I was sat in a stuffy room for two hours and talked at and down to by staff who were supposed to be supportive. I was handed a bunch of papers and told that this was everything I needed to know and that I would recieve no further help from the Aspergers Service.

I have trouble with my short term memory and I have trouble taking in information. Being handed a booklet and some papers and being subjected to two hours of a barrage of information has not helped in the slightest. I am still nonplussed about my condition and I still don't have any coping strategies. I know that the Aspergers Team is swamped, but that doesn't excuse the fact that I have been handed this diagnosis, given the bare minimum of assistance and then cut loose. I am not happy.

Being told you have a condition and then simply given bits of paper is not good enough. I expected support- not a two hour lecture in a stuffy, hot room. How does that help anybody? There needs to be something else, something more... anything other than the treatment (or lack of) I recieved.

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Responses

Response from Alinda Gillott, Clinical Psychologist, IDD Psychologists, Nottinghamshire Healthcare NHS Foundation Trust 5 years ago
Alinda Gillott
Clinical Psychologist, IDD Psychologists,
Nottinghamshire Healthcare NHS Foundation Trust
Submitted on 13/07/2018 at 12:03
Published on Care Opinion at 12:05


picture of Alinda Gillott

Dear RebelHeart1701

Thank you for your feedback. We are sorry to hear that this has been your experience. We are a small service with ever increasing demands and we continually review our processes to manage both waiting times for diagnostic assessment and what we are able to offer in terms of follow-up support. The booklet we have developed is designed to be introductory reading for those recently diagnosed and workshop aims to provide further information. The workshop format is a recent addition and it is helpful to receive your feedback on this, which we will certainly take into consideration.

Following previous feedback we do deliberately leave a time gap between giving the diagnosis and offering the workshop. Our aim will be to develop a series of workshops. People come with differing amounts of knowledge about the condition and we appreciate the information we give may not suit everyone. In addition we are aware that not everyone is comfortable sharing their experiences, so much of the format is information giving.

We are sorry you felt talked down to, this was certainly not our intention. We aim to provide compassionate care, and recognise people are experts by experience. This was obviously not your experience. Given your feedback, we will certainly review the duration of the workshop, the volume of information we provide within it, and the format this is delivered.

Dr Alinda Gillott

Consultant Clinical Psychologist

Nottingham City Asperger Service & Adult ADHD clinic

The Pines, Highbury Hospital

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Update posted by RebelHeart1701 (a service user)

While I appreciate your apologies and they do make me feel slightly better, I am still left feeling adrift with little to no support. I am having to muddle my through understanding the condition without the assistance of somebody in the know.

Response from Jackie Dziewanowska, Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate, nottinghamshire healthcare NHS trust 5 years ago
Jackie Dziewanowska
Autism Spectrum Disorder Nurse Consultant, Specialist Services Directorate,
nottinghamshire healthcare NHS trust
Submitted on 16/07/2018 at 14:52
Published on Care Opinion on 17/07/2018 at 08:15


Dear RebelHeart1701

Thank you for replying to the response made by Dr Alinda Gillott.

I am very sorry that we have not been able to help with your concerns. If you would like to contact me I would be more than happy to meet with you to plan a way forward in terms of the support you need.

You can contact me on NCAS@nottshc.nhs.uk or Tel: 011508542207.

Jackie Dziewanowska

Autism Spectrum Disorder Nurse Consultant

Independent Non Medical Prescriber

Nottingham City Asperger Service Clinical lead

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