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Autism diagnosis

Posted By Screen Name 71

"Autism diagnosis"

About: Intellectual Developmental Disabilities /Learning Disability Services - Community / Neurodevelopmental Specialist Service Millbrook Mental Health Unit

(as a service user),

I saw first specialist last August after GP referred me May/June. She said she was referring me to Nottingham City Autism Service (as per the procedure). In February I learned that the referral had not been made and that I had somehow 'slipped through the net'. By this point Corona was on the horizon.

I eventually got a phone consultation with Notts specialist 2 weeks ago. She informed me what a complex procedure diagnosis is and that due to Corona I am now looking at another year to full diagnosis.

She did say she would send me details of support groups to help with anxiety the waiting is causing.

Yesterday I received this. But one of the services is for 'people who identify as female'. I had specifically said in my consultation that I'm non binary. So not very helpful. The other service says it's for people with a diagnosis. So no idea if they will accept me.

Just went on to the online survey and in gender options it only gives M / F or 'prefer not to say'. I was forced to tick 3rd option, as if I'm ashamed of my non binary status. Which is not the case at all.

To be fair the actual consultation was ok and I should give a shout out to Dr Maliks secretary at Milbrook  because she did try to push things through for me quickly when we realised I'd got missed.

But there are issues with how this service is caring for diverse gender identities.

Last thing - I have been given an appointment back at Milbrook in December, but I'm told this is not at all related to my diagnosis. So what is the point? Surely they should give that slot to someone waiting for 1st referral?

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Responses

Response from Jane Danforth, Involvement & Experience Officer, Involvement, Experience and Volunteering Team, Nottinghamshire Healthcare NHS Trust 3 years ago
We are preparing to make a change
Jane Danforth
Involvement & Experience Officer, Involvement, Experience and Volunteering Team,
Nottinghamshire Healthcare NHS Trust

Hello, my name is Jane Danforth. My role involves helping our service users, volunteers and staff to understand that Notts Healthcare wants to hear stories about our services. We reply to every story and it really helps us to improve what we do, how we do it and to hear about what works well too.

Submitted on 06/08/2020 at 07:21
Published on Care Opinion at 10:29

picture of Jane Danforth

Thank you for sharing your experience. Firstly can I say how sorry we are for not responding to you before now. It's not what we aim for at Notts Healthcare as we like to respond quickly as a rule.

As some of the services you mentioned hadn't seen your posting I have forwarded it on to them and asked them to reply. If you have an update or there is anything else you would like to say, please reply and I will make sure the right services see it.

You have raised several issues in your story and it will take a little time to make a full response but rest assured I will speak to the services you have mentioned. I was pleased to hear that the consultation was OK and Dr Malik's secretary was helpful. I can let them know about this.

You mentioned the online survey. I can speak to the Involvement Experience & Volunteering team about this regarding the gender options. Thank you for your feedback on this as it is really helpful to hear what you think so that we can improve the online survey.

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Update posted by Screen Name 71 (a service user)

Thank you for the reply. It would be really good if you could pass on the positive feedback to Dr Malik's secretary. But I would rather you didn't speak to the second consultant I saw until after my assessment as I'm really anxious that it will affect my treatment. I don't necessarily think singling people out is the right approach - probably better if all staff have training instead.

I did ring the second support service I was given info for and they did say that I would not be able to access until I have a diagnosis. So in future, it might be worth not signposting other in my situation to that service!

Thanks again, I know the NHS is under enormous pressure and that you all work really hard to provide the best possible treatment. I know that nothing I have experienced is due to any intentional bias or unprofessionalism.

Response from Clare Pugh, Acting Clinical Lead CBT Therapist, Nottingham City Autism Service, Nottinghamshire Healthcare NHS Foundation Trust 3 years ago
Clare Pugh
Acting Clinical Lead CBT Therapist, Nottingham City Autism Service,
Nottinghamshire Healthcare NHS Foundation Trust

Submitted on 06/08/2020 at 13:34
Published on Care Opinion at 13:34

We are sorry to hear that your experience with NCAS has not been good and we would really like you to contact us directly to hear more about your experience.

We are highly sensitive to the needs of everyone who is referred to NCAS including those who identify as non-binary. However sometimes, as with all services we don’t get things 100% right.

Please contact the service on 0115 854 2207 or email ncas@nottshc.nhs.uk with your details so that we can make contact with you. Be assured that we do want to help.

Thank you for sharing your story.

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Response from Richard Danks, Nottinghamshire Healthcare NHS Foundation Trust 3 years ago
Richard Danks
Nottinghamshire Healthcare NHS Foundation Trust

Submitted on 06/08/2020 at 14:29
Published on Care Opinion at 14:29

Hello, Screen Name 71, my name is Richard Danks and I am a matron in Adult Mental Health based at Millbrook.

Firstly Apologies for a delay in a response to you from Adult Mental Health as you may have seen one of our doctors at your first appointment, who went on to refer you to the City Autism Service, albeit after a delay when your case appeared to ‘slip through the net.’ If this is the case then I can only apologies for this delay in the referral to the specialist service.

I note you are also due an appointment at Millbrook in December and it appears that it may not be clear what this appointment is for or how it could be helpful to you. If you are willing to call me on the number below and share some details with me, I would be pleased to look into this appointment for you and confirm the reason and purpose of the appointment.

Thank you for taking the time to raise your concerns on Care Opinion.

0115 9691300 extension 1623

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