Medical Appointment Support

[Mumble]

Is there any specific support available to individuals with an ASD or other issue that may cause some communication/interaction difficulties to help in attending and understanding what happens during medical appointments not related to the ASD?

 

For about the last two months I've been going through fairly intensive medical treatment both as an inpatient and outpatient and I've got several months still ahead of me - unrelated to ASD. I've been coping with a bit of ingenuity involving people I can text and say aarrggh haven't a clue what the docs said/doc didn't understand me and a fantastic GP/practise nurse who have been doing everything they can to make things as easy as they can for me but I'm feeling at the maximum of my coping levels now. I had a consultation today with my consultant, two other doctors and saw three nurses who help with different aspects of my treatment and I found it totally overwhelming - so much so I forgot to even look at the list of questions I had written to take, but also, I realise now, that I didn't really take in what was being said and so didn't realise that there were things I didn't understand until several hours later.

 

I know a certain degree of this would be expected for anyone in this situation, but it is exacerbated by my ASD. I'm unsure about how much of one of my medications to take tomorrow morning as I've been given conflicting advice and didn't get anything written this morning, which I really need and didn't think quick enough to ask - I'll contact my GP surgery for advice so I can get through this, although it's not ideal as it's caused me some further stress.

 

Are there any services/anything anyone can suggest to give me some support/who can I ask - I almost need another pair of ears to listen so someone can take me again through what was said when I've had some time to let things go in (and got away from the sensory overloading hospital environment) and realise what I didn't understand or someway of being able to go back with questions, but this doesn't fit the usual way consultants work.

 

[chris54]

I don't know of anything, but there is nothing to stop you having a friend or relative with you when you go for your appointments. The doctor may question the person being there but if you say it is OK/ what you want then they can be there.

[TheNeil]

What about recording the consultation (assuming that the doc/nurse agrees) so that you play it back later?

[Mumble]

Unfortunately I don't have anyone who can go with me, otherwise that would be ideal. I had thought about recording (or asking to record) but that doesn't get over the problem of me not being able to take info in 'in the moment' and ask questions whilst I have the chance.

 

I spoke to my practise nurse about it today and she's going to have a think - she agreed that I need a second pair of ears (well not me... ) and said she'd expect anyone to find it difficult so is unsurprised that I'm finding it hard. I was really worried I'd be told off for being unsure about my medication, but they were lovely.

 

[oxgirl]

What about asking them to write down instructions and information so you can read it later?

 

~ Mel ~

[Mumble]

What about asking them to write down instructions and information so you can read it later?

Yep - I've got some email contact with my main nurse now which helps in part and I think if I have some dialogue (through email) with her to help her understand what I'm finding difficult, I'll feel more comfortable with saying "I don't understand that, could you please explain it again/differently" rather than my usual nod along and pretend I understand because I don't want to create a fuss and I'm scared of looking stupid.

[oxgirl]

You've explained yourself very well here to us, if you have her email just tell her the same as you've told us.

 

~ Mel ~

[peaches]

Is there any specific support available to individuals with an ASD or other issue that may cause some communication/interaction difficulties to help in attending and understanding what happens during medical appointments not related to the ASD?

 

For about the last two months I've been going through fairly intensive medical treatment both as an inpatient and outpatient and I've got several months still ahead of me - unrelated to ASD. I've been coping with a bit of ingenuity involving people I can text and say aarrggh haven't a clue what the docs said/doc didn't understand me and a fantastic GP/practise nurse who have been doing everything they can to make things as easy as they can for me but I'm feeling at the maximum of my coping levels now. I had a consultation today with my consultant, two other doctors and saw three nurses who help with different aspects of my treatment and I found it totally overwhelming - so much so I forgot to even look at the list of questions I had written to take, but also, I realise now, that I didn't really take in what was being said and so didn't realise that there were things I didn't understand until several hours later.

 

I know a certain degree of this would be expected for anyone in this situation, but it is exacerbated by my ASD. I'm unsure about how much of one of my medications to take tomorrow morning as I've been given conflicting advice and didn't get anything written this morning, which I really need and didn't think quick enough to ask - I'll contact my GP surgery for advice so I can get through this, although it's not ideal as it's caused me some further stress.

 

Are there any services/anything anyone can suggest to give me some support/who can I ask - I almost need another pair of ears to listen so someone can take me again through what was said when I've had some time to let things go in (and got away from the sensory overloading hospital environment) and realise what I didn't understand or someway of being able to go back with questions, but this doesn't fit the usual way consultants work.

 

I agree, you do need another person with you, some sort of advocate. I think some hospitals do have this sort of service but I cant for the life of me remember what its called. I have an Asperger's daughter, 22, diagnosed as an adult and I have to go to most of her medical appointments ESPECIALLY the psychiatric ones, otherwise nothing happens or she doesnt go or we never find out what is wrong.

 

I understand that most hospitals have a PALS service, but Im not sure if this is just about making a complaint. They are a patient advisory and liaison body. Take the name of your hospital and add hospital PALS to it on a google search and see if they come up about it.

 

Otherwise, I suspect you dont have a support worker through social services, but this is the sort of person who could help. I wonder if there are any charities who support people during their hospital visit? Surely there must be?

Edited November 3, 2008 by peaches

[Mumble]

I agree, you do need another person with you, some sort of advocate. I think some hospitals do have this sort of service but I cant for the life of me remember what its called. I have an Asperger's daughter, 22, diagnosed as an adult and I have to go to most of her medical appointments ESPECIALLY the psychiatric ones, otherwise nothing happens or she doesnt go or we never find out what is wrong.

 

I understand that most hospitals have a PALS service, but Im not sure if this is just about making a complaint. They are a patient advisory and liaison body. Take the name of your hospital and add hospital PALS to it on a google search and see if they come up about it.

Thanks - I just looked up PALS - in their info they don't do what I need - they offer language and sign language interpretation - but they have an email address so it can't harm for me email them and ask. If they don't, they might know someone who does.

 

This isn't psychiatric services, it's general/specialist medical and it's amazing how much they separate the medical from the ASD rather than seeing that although the ASD doesn't affect the medical issues directly, it does have an impact on me and how I cope with the medical issues. I've reached a sort of invisible threshold where I just feel things are washing over me and I'm not taking things in - I definitely don't feel in control anymore.

 

My nurse is going to try and ensure there's less people in my consultations which should help a bit too and I'm going to see my GP tomorrow so will ask about any support.