• Replies 4 replies
  • Subscribers 31 subscribers
  • Views 2374 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Wider mplications of disclosing autism/ADHD/social anxiety etc to GP practice -(UK only)

Pegasus

Hello all,

I am an adult female in full-time work and live independently. I do not have learning disabilities (as far as I know). I am on the NHS waiting list for adult autism assessment/diagnosis. I have obtained a private assessment also (for speed and comparison). I have no issue with the diagnosis/assessment of me being on the autistic spectrum with ADHD and anxiety. I have not divulged the assessment findings to my GP as I feared it would go on my NHS records. I have some reservations to this diagnosis being more widely shared within the NHS in case I have to go to hospital again. Previous in-patient stays were extremely stressful for me with open comments from nursing staff that I was 'difficult' and 'upset other patients'. I found this upsetting and humiliating but I knew it was borne from my own anxiety - new place, unfamiliar surroundings, beeps, noises, no explanations, exasperation in staff tone towards me- you may be familiar with this. I was scared most of the time in hospital.

TL:DR I fear worse treatment from the NHS and their staff if I disclose the diagnose to my GP and it goes on my records. The NHS sees 'risk first' and seems to go for the nuclear option in 'managing risk' eg by using restraint and I fear this.

I welcome thoughts and experiences but please do not pass judgement on my accessing diagnosis through a private route.  Does anyone have any positive reassurance to offer?

Thank you.

  • Can't imagine why anyone would 'pass judgement on accessing diagnosis through a private route'. My GP advised me to do that because I'm in my 60s and it may take years to get an NHS diagnosis; she then kindly checked out the provider for me, before I committed. I wouldn't 'judge' anyone, in any circumstanes, for doing it privately.    

    The points you raise in respect of informing the GP are thought provoking.

    GPs are great for low level sickness, minor injuries etc.  Anything more complex than warts and sniffles and it's a lottery.

    I was told as a kid that I had "strained" my neck (it was lymphatic cancer, diagnosed much later than it could have been).

    After having my spleen removed (radically impairs your immune system) I was told to "go home and rest" when I got Chicken Pox (it nearly killed me - 999 into ITU for ten days, family told to prepare for the worst).

    My step son, who was born with Club Feet, was asked by a new GP if he had "fallen out of a tree".  He was in his 40s at the time.  When he told her (again) that it if you carry out multiple operations on a child with Club Feet, this is what they look like as an adult, she said "Club Feet?  You haven't got Club Feet! What on earth gave you that idea?" This was only a couple of years ago (changed GP, proper surgical treatment to allow for ageing and growth followed).  

    There are over 50K licensed GPs in the UK. In any group of that size, in any profession, there'll be a range of competences and attitudes.

    But even if you have an enlightened, well-informed GP, who does more than just the basic 50 hours of CPD a year, and approaches autism from an informed base, once you tell them, you're in the system. 

    The GP may change and other NHS staff (people you don't even know yet) will have access to that information over the years. If you hand over the information, you've lost control of it. You're right: that needs some careful consideration.  

  • I know how you feel but disclosing it helps in my case has done 

    to me it for more understanding

  • Hi Pegasus,

    Thank you for sharing this with our community. While we are waiting for the community to respond, you may like to take a look at our page about anxiety, https://www.autism.org.uk/advice-and-guidance/topics/mental-health/anxiety

    Hope this helps!

    Kind regards,

    Eunice Mod

  • implications not mplications - cannot edit this out.