Support or lack of

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.

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:

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.

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.

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.