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Difficulty Accessing Reasonable Adjustments at My GP

soboiceland

Hello,

I’m an autistic patient advocating for myself at my GP surgery and wanted to share some difficulties I’ve had with reasonable adjustments.

Some of my requests, like clear communication, interim support, or understanding what adjustments can be reliably provided, haven’t always been addressed. This has caused stress, confusion, and uncertainty.

For example:

  • I asked them not to use vague language. They said “we will try,” but trying isn’t enough when unclear communication harms me.

  • I asked them to clarify their written communication style. They asked why I needed clarification.

  • I requested interim measures to prevent risks. They asked why I needed them despite me explaining my concerns. I understand that full profiles or care plans may be best handled by specialists, but interim adjustments could help me access care safely.

  • When I struggled on the phone with a receptionist, I was told to terminate the call, which feels like a barrier.

If you’ve experienced similar barriers at your GP, how did you manage them or get support? If not, what advice would you give me?




Parents

  • All GP surgeries are legally required to have a PPG (patient participation group). it might be worth trying to find about more about your practice's PPG.

    I got the impression (perhaps wrongly) that you were discussing your requirements with receptionists/administrators. I think its better to discuss with a dr or nurse who will have better understanding. 

  • in reply to Monkeyclogs

    Thanks for suggesting the PPG. Yes, it would be worth trying to get involved with the PPG. 

    I discussed my adjustments with the practice manager and my doctor. 

  • in reply to soboiceland

    ah apologies for misunderstanding about who you spoke to. is there another dr at the practice who might be more helpful? 

    I had a conversation with my GP last week about diagnosis and he happened to mention that neurodiversity wasn't really covered at medical school decades ago. i'm guessing there are Drs who are less up to date than others. 

    The more I read on here about other GPs the more grateful I am that I finally found one that is helpful. I met a lot of less helpful along the way, I thought I'd just been unlucky but maybe thats the norm. 

    The other thing my drs has is a named learning disabilities co-ordinator. im not sure how widely spread this is, but theres a nurse who is able to review care plans. Maybe worth asking if theres a nurse at your practice?

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  • in reply to soboiceland

    ah apologies for misunderstanding about who you spoke to. is there another dr at the practice who might be more helpful? 

    I had a conversation with my GP last week about diagnosis and he happened to mention that neurodiversity wasn't really covered at medical school decades ago. i'm guessing there are Drs who are less up to date than others. 

    The more I read on here about other GPs the more grateful I am that I finally found one that is helpful. I met a lot of less helpful along the way, I thought I'd just been unlucky but maybe thats the norm. 

    The other thing my drs has is a named learning disabilities co-ordinator. im not sure how widely spread this is, but theres a nurse who is able to review care plans. Maybe worth asking if theres a nurse at your practice?

Children
  • in reply to Monkeyclogs

    If a clinician I am engaging with is not fully up to date, I would appreciate honesty regarding that. Deflecting or being dismissive is not acceptable.

    While I understand that I can seek care elsewhere if I am dissatisfied with the service at the practice, I believe the surgery has a responsibility to take reasonable steps to ensure patient satisfaction and appropriate care.

    I have not yet spoken with the nurse but remain open to doing so. I do find it unfortunate that formal authority (e.g., an autism specialist) appears necessary to support the implementation of reasonable adjustments, even though I am capable of advocating for myself.

    I appreciate your suggestion.