Support or lack of

The hospital may provide a taxi if asked. If you have an operation they should provide this or at least book one. I have driven to an op before, parked my car. Woken up a few hours later with two tickets.

I realise this may not be covered by your question, but I realised yesterday that the finincial support availble is limited and those working in the care services may be acting under guidance to restrict it. Getting people to listen is very difficult, I have asked all for all my calls to be recorded. But also I don't think a lot of the staff in the NHS are equipped to deal with neurodiverse ppl in a sypathetic way, as most are agency workers only worried about their next pay cheque.

I think in the future, staff will be trained to recognise these boundaries instead of trampling them.

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. 

You're welcome.

I just wanted to be supportive.

Thank you. You are kind to say that. 

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.

That sounds really tough, especially having to manage everything on your own.

You’ve handled so much already. I hope this next time goes smoothly and that you get the care and kindness you deserve.

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It’s exhausting, isn’t it?

I hope the blood test goes okay and your GP gives you a bit more clarity.

Sometimes just knowing what’s next helps a little.

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.

Yes I am the same. I have to go through all the eventualities. If there is uncertainty in my life I will make up a whole host of imaginary outcomes to fill that uncertainty. It is not my favourite part of my brain.

Yes. Need to get through a blood test this week and then make another appointment with my GP. I will at least then know whether he intends to refer it on. He definitely said that it would be a non urgent referral so I'd imagine there could be a good year possibly before I'll even get seen by the hospital.

I'm sure by the letter of the law they'd be in the clear but to me it's still discrimination. I don't have a network of people because of my autism. Therefore it is because of my autism that I wouldn't have someone to pick me up. So to me they would be denying me a procedure because I'm autistic. I may not be able to argue that in a court of law but by principle.

I can understand not wanting it to be an easy option but realistically how many people actually want to stay in hospital. And a diagnosis should count for something. I'm not sure whether it's fortunate or unfortunate in this situation but I do not have any mobility issues so I don't have much argument from that respect.

I actually have an appointment at a new autism hub that has opened in my area to see if there is any support that they can provide me. I'm not overly optimistic with my experience of support so far but if you don't try, you don't get I guess. I will make sure that is on the list of things to bring up.

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.

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.

I'm with you on having to make plans, to cover all bases. I think it's because I don't cope well with uncertainty. My brain is desperately trying to get an answer to an unanswerable question, in my case anyway.

I’m glad you’re thinking about having that conversation with the hospital. Just knowing you’re planning it and taking it step by step is already a huge thing.

You’re not alone in this.

Expecto_Patronum said:

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.

My understanding is that this is an optional service so they can charge. 

I don't think they will consider this disability discrimination - your personal circumstances of not having someone to help is not their issue and the decision is not made on the basis of your disability, so they are legally in the clear (as I understand the law).

My suspicion is that they will be inflexible in not offering inpatient options here because this opens the door to lots of people asking for the same, claiming they have nobody to help them. The hospital lacks the resurces and probably legal ability to check if they are lying so will choose the option to save money for other services and keep the bed open for people they consider who need it more.

I know part of the reason my mother has inpatient treatment for what would normally be outpatient care is due to her very limited mobility and large number of other health conditions so she is at high risk of complications from even simple procedures.

Expecto_Patronum said:

If they don't provide support - it seems like a massive hole in the medical system.

I agree. I suspect it is because the care you are asking for is costly to them or requires resoures (manpower) that they are very restricted on. Lack of funding combined with rising medicine costs and higher rates of being sued will all contribute.

Maybe a local autism charity could supply you with someone to be your support - it will depend on whether you could cope with a stranger being with you during something so stressful over a lengthy time and potentially needing them to physically help you.

Thank you. That's very kind of you.

There's a possibility it won't even happen. But yes, I need to wait and see what happens with the other tests first and then if the referral is made, I need to have a good conversation with the hospital. Advocating for yourself is just so hard.

At the moment it may not even happen. I need to slow down a bit I think. It's just not something I've ever considered before and it hit quite hard when I realised how problematic it could be.

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.

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.

That sounds so hard to face on your own.

I honestly wish I could go with you, just so you didn’t have to do it alone.

Hopefully the hospital can help sort something out, maybe patient transport or someone who can stay with you for a bit. You shouldn’t have to do this by yourself.

They may have to wait before you are discharged, so they can observe you.

You need to ask them.