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Database for GP surgeries with autism experience

NAS64261

Hi,

this is going to be a kind of a long shot but I am posting this as a reaction to my GP appointment that I had this morning.

I am late diagnosed with autism and have had no support or treatment from any NHS department directly relating to my neurodiversity, apart from the lengthy process and waitlist to receive my diagnosis. On and off I have been with the mental health team to address my depression, anxiety and mood swings, and although I felt listened to in the initial first response team assessments and in the first two CBT sessions, they were unable to offer ongoing support, in their own words they chose to address the symptoms and not be bothered with the causes. One psychotherapist even bluntly said that if I was not progressing then that was because I wasn't trying hard enough to work on my condition!

Back to today's appointment, explaining to my GP that I had autism and was going through autistic burnout and circadian rhythm disorder, I directly asked if there was a GP that knew about autism and provide the adequate approach and support. His simple answer was no. I then asked if there was a database for GP surgeries that listed doctors or nurses specialised or experienced with autistic patients and he again said no and that I would have to do the field research work myself.

His response (forget about the lack of empathy)  shocked me. NHS databases exist to look up specialists such as dietitians, diabetic nurses, paediatricians, urologists etc. practicing at GP surgeries, they can even be filtered for patients requiring accessibility and Loop, but they throw a blind eye at people with autism or ADHD?

Any feedback or hints are much appreciated.  

Parents

  • In my region of Scotland, you can only be an autistic adult if you have a learning disability. I couldn't even get my child assessed going through the doctor, CAMHS rejected the referral, basically saying it had to go through the school, which is trickier when kids keep their heads down in class and struggle, and struggle in the playground where teachers don't watch. My other child just got diagnosed as it does effect school work but has now been discharged with no support. I'm glad I got diagnosed privately so we can figure it out together as there is no help.

  • in reply to Cinnabar_wing

    My odyssey with the NHS trusts was comparable. I first asked for a referral in 2013, at which time I was experiencing an episode of meltdowns. The GP bluntly dismissed my request, saying that I was coping. She didn't even ask how I was doing or why, she appeared confident from seeing me for the first time within 30 seconds that a referral was not necessary. Three years later, and changing surgeries, I got past the hurdle of the GP, only to have my referral lost in digital paperwork twice. The third attempt was thrown out by the trust's budget committee, basically saying there was no interest spending the money. Next, a community mental health centre psychiatrist dismissed my request saying that I was making eye contact, therefore I impossibly could be on the spectrum. 10 years of emotional agony and two unfair dismissals from work due to lack of a clinical diagnosis.

    It would be actually better for the system to openly tell us where to go than lie to us that they're there to help. I'm coming to believe the only thing they're helping with is getting rid of their guilty conscience.

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  • in reply to Cinnabar_wing

    My odyssey with the NHS trusts was comparable. I first asked for a referral in 2013, at which time I was experiencing an episode of meltdowns. The GP bluntly dismissed my request, saying that I was coping. She didn't even ask how I was doing or why, she appeared confident from seeing me for the first time within 30 seconds that a referral was not necessary. Three years later, and changing surgeries, I got past the hurdle of the GP, only to have my referral lost in digital paperwork twice. The third attempt was thrown out by the trust's budget committee, basically saying there was no interest spending the money. Next, a community mental health centre psychiatrist dismissed my request saying that I was making eye contact, therefore I impossibly could be on the spectrum. 10 years of emotional agony and two unfair dismissals from work due to lack of a clinical diagnosis.

    It would be actually better for the system to openly tell us where to go than lie to us that they're there to help. I'm coming to believe the only thing they're helping with is getting rid of their guilty conscience.

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