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Support or lack of

Expecto_Patronum

I am definitely getting ahead of myself here but that is what my little brain does. I've recently had some medical issues that I've been to the doctors about. They are running some tests but did say if the tests don't show anything they will probably refer it on for further investigation. Me being me, I googled the details of this and the further investigation is generally done under sedation which means you have to have someone pick you up from this hospital and stay with you afterwards. I am not in a position where I have anybody that I could ask to do this.

I have tried googling support that the hospital may be able to provide and came up with nothing. Now I know this is a hypothetical situation and the rational response is, wait and see what your test results are like and deal with this if it actually gets referred.

But it's made me think. I cannot be the only person that would be in this position of not being able to be picked up from the hospital. So what I'm wondering is a) are there any supports actually available for unsupported autistic patients b) has anyone ever actually been in this situation and c) if the answer to a and b is no, do they just refuse to do non emergency procedures if the patient is unable to provide someone to collect them.

Parents
  • Expecto_Patronum said:
    do they just refuse to do non emergency procedures if the patient is unable to provide someone to collect them.

    You may be able to request inpatient treatment for this but you will almost certainly be charged for the room and care which is unlikely to be cheap.

    I've asked about this for some procedures I have which involve a general anasthetic and they would charge me thousands of pounds for this service (rough currency equiveant as I'm not in the UK).

    I know when my elderly mother goes in for such procedures that she stays overnight with them (ie becomes an in-patient) as there is no-one available during the day to help. Possibly your diagnosis and lack of support person may allow you access to this if you can handle it - best to ask them.

    I've not come across any places that offer autistic support for medical procedures however so it may be very much down to the professionals doing these. It may be worth having some notes with you explaining how you may react (eg going non verbal, having a fear of needles and any reactions that may put them at risk - if you lash out in meltdown for example). 

    This gives them time to understand the challanges in helping you and possible ways to calm you if you do react badly to the stress.

    This is not medical advice of course, just recommending who to ask questions to.

Reply
  • Expecto_Patronum said:
    do they just refuse to do non emergency procedures if the patient is unable to provide someone to collect them.

    You may be able to request inpatient treatment for this but you will almost certainly be charged for the room and care which is unlikely to be cheap.

    I've asked about this for some procedures I have which involve a general anasthetic and they would charge me thousands of pounds for this service (rough currency equiveant as I'm not in the UK).

    I know when my elderly mother goes in for such procedures that she stays overnight with them (ie becomes an in-patient) as there is no-one available during the day to help. Possibly your diagnosis and lack of support person may allow you access to this if you can handle it - best to ask them.

    I've not come across any places that offer autistic support for medical procedures however so it may be very much down to the professionals doing these. It may be worth having some notes with you explaining how you may react (eg going non verbal, having a fear of needles and any reactions that may put them at risk - if you lash out in meltdown for example). 

    This gives them time to understand the challanges in helping you and possible ways to calm you if you do react badly to the stress.

    This is not medical advice of course, just recommending who to ask questions to.

Children
  • in reply to Iain

    Is the NHS allowed to charge in those circumstances? I know they can for a private room but they'd basically be charging me for having a disability. If you're not in UK - you may not know the answer to that.

    At the moment it's so hypothetical, I will wait and see what gets discussed. I think it'll be a long way off. My brain just tries to plan for every eventuality.

    If they don't provide support - it seems like a massive hole in the medical system. I knew autism support in hospitals wasn't brilliant. But I'd never considered a situation like this. Hopefully if I do need it, they'll allow it as an inpatient. But if support isn't offered I think I'll be raising it with my local MP as there must be many others in my situation.