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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

  • I have had several surgical procedures over the last few years, and I have two more upcoming procedures. The whole thing about needing somebody to accompany me home and stay with me is stressing me out.

    I was told that surgery would not go ahead unless I had someone who could take me home and stay with me, and on two occasions I had to cancel surgery because I didn’t have anybody available. A couple of times I have said someone (taxi) is at the hospital door waiting for me, and they have reluctantly let me leave the ward on my own. 

    The NHS here is at breaking point and they won’t let people stay an extra day, although they always used to when things weren’t so bad. 

    I had a knee replacement a while back in Lithuania. I drove my automatic car to the airport, stayed a couple of weeks and drove home again. The medical people looked after my transport and care within Lithuania. It worked out very well so I will be returning in the future to have my other knee done, although this time no driving as it will be the right knee.

  • in reply to ArchaeC

    This is my big concern. It seems crazy to me that there is no accomodation for someone who doesn't have someone that can pick them up.

    I am wary of lying because if I did get taken home by a taxi and then had issues due to the sedation, no one would know. Unlikely but possible.

    It seems crazy that they would deny you surgery because you don't know people.

    I know NHS struggles but they really need to do better for disabled patients. 

    I hope your upcoming procedures are successful.

Reply
  • in reply to ArchaeC

    This is my big concern. It seems crazy to me that there is no accomodation for someone who doesn't have someone that can pick them up.

    I am wary of lying because if I did get taken home by a taxi and then had issues due to the sedation, no one would know. Unlikely but possible.

    It seems crazy that they would deny you surgery because you don't know people.

    I know NHS struggles but they really need to do better for disabled patients. 

    I hope your upcoming procedures are successful.

Children
  • in reply to Expecto_Patronum

    You would be ideally placed to make a difference as you are potentially affected. I fear that the NHS is too much under pressure to afford a solution for a limited number of autistic adults who are in their own. If I had the energy and ability to take this on, I would probably contact autism charities and MPs to highlight the problem and talk through solutions.

    For me the solution would be that the NHS wouldn’t question me about my home arrangements before I agree to surgery. Alternatively, they would let me stay in hospital for 24 hours.

    I was wondering if our GPs might be of help. My parents needed care towards the end of their lives and many of their needs such as arranging carers, nursing etc., were coordinated via the GP surgery. When hospitals and social services were functioning efficiently, they used to allow people to stay overnight or they sent them off in ambulatory transport to a nursing home.

    I don’t know how to go about getting someone suitable to stay in your home. I know there are private care firms where you can get carers for a set number of hours, but they might not want to do that if it is a one off, rather than an ongoing arrangement. I wouldn’t be able to cope with someone else staying in my home, even if it was a friend. I don’t know why I have an issue with someone potentially staying in my home, as I can cope (with difficulty) with being in hospital. All I know is that it’s too overwhelming. 

  • in reply to ArchaeC

    Fingers crossed. Now I'm aware of the issue, I'm not sure it's something I can let go of. I would really like to be one of those people that can go right I'm going to make a difference and do something to help people in this situation. But I'd have absolutely zero clue how to do anything to help.

  • in reply to Expecto_Patronum

    Thanks Expecto Patronum. The issue for the NHS is duty of care, so the protocol doesn’t allow them to proceed if they know people don’t have anyone to accompany them, yet as you say, they don’t accommodate people like us. 

    I hope you won’t need anything done that will require sedation or general anaesthetic. Yet the issue still remains for us.