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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

  • I've had this conversation a couple of times with my GP's and they're unhappy at the lack of support too, they said they just don't know where to send people. The place for N. Wales that deals with ND is totally useless, they seem to offer so little help that I wonder what they're actually for? Other organisations, like MIND, do activities for ND people, but only if your school age, they more or less told me go away, using less diplomatic language than that and treated me like I was wasting thier time by even asking and hung up on me. If thats how they treat people then it's little wonder that one of the most common questions here is about help for us latelings who are just left to get on with it.

  • in reply to TheCatWoman

    It reminds me very much of when my son was diagnosed using the private route. We went private as he was struggling badly at school and was being suspended every second week plus was barred from afternoon classes, and the headteacher told us that he would be expelled if we couldn't provide a clinical diagnosis in due course. 

    After that hurdle was taken his headteacher was excellent in calling in a support team, which included a NHS psychiatrist and who turned up to the support team meetings only once. We had to wait 6 months for an appointment scheduled by the support team, in a nutshell all that he did was to reconfirm that our son had autism. When I asked him about mental support he snapped back saying 'you've already got the diagnosis, what else do you want.'

    It's seriously hard for me to remain polite when I walk into a surgery. I don't owe them anything anymore 

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  • in reply to TheCatWoman

    It reminds me very much of when my son was diagnosed using the private route. We went private as he was struggling badly at school and was being suspended every second week plus was barred from afternoon classes, and the headteacher told us that he would be expelled if we couldn't provide a clinical diagnosis in due course. 

    After that hurdle was taken his headteacher was excellent in calling in a support team, which included a NHS psychiatrist and who turned up to the support team meetings only once. We had to wait 6 months for an appointment scheduled by the support team, in a nutshell all that he did was to reconfirm that our son had autism. When I asked him about mental support he snapped back saying 'you've already got the diagnosis, what else do you want.'

    It's seriously hard for me to remain polite when I walk into a surgery. I don't owe them anything anymore 

Children
  • in reply to NAS64261

    I'm not surprised you find it hard to remain polite, I would too. I'm very lucky that my GP's are so brilliant, they try and do as much as they can with limited resourses.

    I think everybody is struggling with years and years of underinvestment, we're quite happy to vote for tax cuts and councils that promise not to raise council tax, but we still want them to provide Scandinavian levels of service and they just can't. There is a lot of waste in the systems, but not on the front lines where all the cuts seem to happen. I think theres also a massive attitude problem in many of the "helping and caring" agencies, they get so protective of thier interest and end up blaming those of us seeking help that they dont' cater for. I see so many different groups that seem to operate in silos, never talking to each other, all seemingly unaware of or hostile to each other.  The group I was refered to by my GP who was really happy she had somewhere to send people for help and had just heard of this new group and had referal forms sent to the surgery, when the group contacted me, they said that they'd had to speak to management about whether to respond to my referal as it was on the old form! My GP had only just recieved the forms. Why bother sending out forms that are out of date? It makes no sense!