Explaining Aspergers to hospitals

[mumble_rocks]

Hi All,

 

Sorry I havent been around much! I need some help and some brains.

 

Last week I was taken into hopsital after having a cold and cough as I couldnt breath very well, long story made short turns out to be asthma which has since resulted in a few more amblence trips and hospital visits.

 

I need some help as everytime I get bad, I am that breathless I cant speak. Therefore relly on others around to explain everything, which doesnt always happen, until a paramedic get pushed/hit when they try to attach me to machienes ect. The not being able to breath along with the panic etc causes a complete overload. After the incident tonight where I ended up pushing a paramedic to the entent he called another unit to help, and now speaking to others, my friends know I have aspergers but cant always expalin it well.

 

We think that writing a word doc that stays with all the medication (the hospital bag) that can get passed to docs/paramedics before they try and treat me would be an idea.

 

I need to get across the fact I don't mean to not be co-operative nor rude, or even aggressive, I just can't cope. How am I best to do this?

Also, any recommendations for the doctors on the best way of approching treating me other then at least a metre away??

 

Thanks in advance,

[Kathryn]

Hi mumble rocks,

 

Sorry to hear you haven't been well and that you had a bad time in hospital. I hope you're feeling a bit better. Your idea is good.I'm sure someone on this forum wrote the kind of document you describe - although I can't remember who. Hopefully someone will be along soon with some specific advice.

 

It might be a good idea for you and your friends just to list all the difficulties you experienced - everything that comes to mind. Then they and you can think about how to put it all into a document clearly and concisely so that the medics can understand what you need.

 

K x

[bid]

You could also have something like a Medic-Alert bracelet/necklace to show that you have asthma and ASD. The paramedics/hospital can then ring a central number that holds complete details of your medical conditions plus consultant/GP details too.

 

My DD has one for her life-threatening food allergies, and you can get quite funky sports bracelets with a velcro type wrist strap.

 

Bid

[KarenT]

I have some notes that I put together for leisure centres, sports instructors etc working with children who have AS. It's obviously geared towards children's needs but it might give you a baseline that you can tweak to your needs as an adult. If you think it might be of some use, PM me with an email address I'll forward it on.

 

Karen

x

[cmuir]

Hi

 

In the first (immediate) instance, the autism alert cards from NAS might be a good idea. During emergency situations, staff are unlikely to have the time to be able to read much more than a card. Thereafter, leaflets, again available from NAS, might help.

 

Best wishes

 

Caroline

[Mumble]

Hi Mumble_Rocks,

 

I have multiple, often emergency (ambulance/resus), hospital admissions, and have (just about) solved this. I find the more approaches and strategies the better, so hopefully at least one gets through. It doesn't work all the time, and I've had a horrible incident that left me in a life-threatening situation as I couldn't explain, but at least I can then say to myself, well I did everything and I don't blame myself.

 

I've found the best thing is to have as many people as possible who could help in an emergency aware of the situation/implications - people do want to help and will go out of their way to do so, and it's reassuring to them to know what to do and that they're doing the right thing.

 

Emergency Care

The first priority of the paramedics is to maintain life - they do not have time to read copious notes, nor would this be helpful at that time - they need the minimum information to treat you.

 

I have (so hopefully one gets found if I'm on my own!):

• Autism alert card which I carry with my other alert card and warning card.
• An alert/medicines card in my wallet (because some people would look there for ID) with a note on top saying "Please see medicine bag".
• I wear a Medicalert bracelet but have actually found this less successful (as least in winter with coats, gloves etc!)
• A number of ICE (In Case of Emergency - the emergency services suggested after the London bombings that everyone should put one into their mobile phone list) numbers in my phone all of whom know my conditions and autism and could give further info
• An ICE message saved on my phone with dxs, emergency contact and please see card
• The main thing - I have a very basic bullet pointed card I keep with my medicine bag and medicine list that is always on me plus a copy of each with the medicines/equipment in my room (which are in an obvious place). These are printed on red card and laminated and can just be picked up and taken for reference. I don't want to put all the details here, but basically mine includes:

 

Patient Name: Mumble.................................................. NHS Number: 1234567890

GP: Dr. xxx (and phone no)........................................... Hospital number: 1234567890

Consultant: Name, hospital, number, bleep .................. Emergency contacts: Names, numbers

 

• I have <<principle medical diagnosis>> (see medicines card)
• Symptoms of an attack are: X, Y, Z
• I am allergic to: X, Y, Z
• Last admission to <<hospital name>> <date>
• I am Autistic. Anxiety can make <<principle medical dx>> worse. Please speak slowly and clearly. Please use short sentences. Tell me what you will do beforehand.
• Please phone emergency contacts ASAP.

That is enough information and really all the paramedics can deal with whilst attending to the medical emergency. Really at that stage it is as much down to luck as anything - you can't do education - but I've found most to be excellent. I put autism rather than AS as it's more likely to be recognised and that's what you need rather than giving a pedantic education on the differences!! Giving a hospital number and last admission details allows then to bring up your notes quickly and your AS should be noted on there so the docs will be more prepared.

 

I don't know how this is done, but my name/address is also flagged with ambulance control so they get the information on the way to me and they can also inform the hospital.

 

Admissions/hospital care

If I've come by ambulance, the information is passed on and my priority is to make sure they contact one of my emergency contacts. My emergency contacts know the vital information that needs passing on. Normally they're keen to call people so I just point to numbers on the laminated card, or if I'm not fully conscious it's there for them to read. My contacts are not family but a good friend and my hall managers who are able to be less emotive and focus on what I need and getting the information across. The hospitals have it in writing on my records that I am happy for them to speak to these people about my treatment.

 

If I have walked in (referred by my GP), my GP always writes a letter saying why she's referred me, severity/changeability of condition, that I am autistic and find it difficult to ask for help - this goes through triage in the normal way but it means I don't have to explain the autism and generally (this is a bit hit and miss) they keep an eye on me when I'm waiting as I'm unlikely to bother anyone and say I'm getting worse.

 

Planned Hospital Appointments

I have found the best way of dealing with this is to be really open about what I find difficult - people can't help if they don't know.

I write down the points I want to cover with my consultant and give him the list.

I have the email address of my specialist nurse who attends the appointments and she can explain anything further.

My practise nurse is in contact with the hospital so there's always a further backup.

 

Dealing with docs

A metre away sounds good!!!

Seriously though, I find it's again about being open, and unfortunately about luck. The good ones will want to know, the few bad ones don't. It helps if they've contacted someone who can explain for you (make sure your contact knows what you would want to say - i.e. tell me what you're doing, don't touch me from behind etc).

If you're bad at getting cannulars into or blood out of you, don't tell the docs!!! It just makes then nervous and makes it harder - it's much easier if you relax () as much as you can - I use a mixture of controlled breathing and visualisation - I'm awful at both but even a small amount of relaxing is better than nothing.

Make sure they know you are scared as there are things they can do - for instance they will often use paediatric needles with me - a lot of my veins have collapsed as I've had so many in, and the smaller ones can be more comfortable. Always ask them to talk through what they are doing and tell you what to expect one step at a time.

If you have a small object that helps you relax, keep it with you and focus on it - I don't care that it may seem strange for an adult to have their teddy with them - it helps me, so it comes with me.

 

 

Unfortunately I'm at the stage where most of the docs/nurses and quite a few of the paramedics know me quite well This is not a situation I recommend getting into although it does mean that they know my 'quirks' better now. I've had some bad experiences and some good experiences (if hospital can be 'good') - I think it's worth persevering with.

 

Some useful resources:

 

Autism Alert Card

Asthma Attack Card

Medicalert

Edited March 9, 2009 by Mumble

[mumble_rocks]

Thank you soo much everyone between all the information me and a friend have condensed it down to half A4 highlighting all major points. Including keeping out of hitting distence as much as possible!

 

Thank you soo much and Mumble that was a great help!