Self-advocacy and Medical Procedures

In the past year, I had a minor medical procedure. It wasn't my first time and I wasn't particularly nervous. Still, it's an environment that stresses me out and I get a bit flustered with all the lights, movement, strange people, demands, vulnerability, unpredictability, etc. As I'm sure I'll have to undergo this sort of thing again in the future, I'm wondering if anyone has any tips to make things a bit easier for everyone involved. How can I express my needs for things to be explained to me in detail as we go along and to allow me to take more time to answer questions and possibly answer a question with a question? The medics are working to a schedule, and I suppose they don't want people slowing them down, so I'm a bit unsure of how to advocate for myself in this sort of situation. When to express my needs, to whom, and in what way, etc.

When I'm asked a question, I tend to think of all of the possible answers for all of the possible interpretations of the question. Then I have to sort through them and guess which interpretation best fits the likely intention of the asker. This takes a few seconds, so my response time is often slow and my response is often to ask another question to get more context to help me narrow down the possibilities. If I'm stressed or flustered, I might not even know what counter-question to ask, so I just freeze.

I can give you a specific example of what I mean. There were a doctor and two nurses in the room. They were being very reassuring and talking me through things. The room was very bright, as you'd expect, and I was lying on my back looking at the ceiling. One nurse was apparently the expert in finding veins and would insert a cannula. The other nurse and the doctor were moving about the room and I was keeping track of them, too (as I do). I was on nil-by-mouth for about 12 hours and a little dehydrated, so finding a vein turned out to be a little trickier than expected. The nurse tried at my elbow: nothing. Halfway down my forearm she inserted the needle, but couldn't get a vein there, so gave up and moved to the back of my hand. There she managed to find a vein and tried with the needle again, then inserted the cannula and then attached a big syringe of what looked like water. At this point, with one needle stick in my forearm and a needle stick and a cannula in my hand, my arm and hand were feeling a bit sore and uncomfortable. Now the fun started: she began to press the plunger on the syringe.

"Does it hurt?" the doctor asked (note: not the nurse with the syringe).

"Eh... um...," I stammered. I didn't know what he was asking or why. He was on the far side of the room. My hand was sore and now the big injection was making it sorer. Which did he mean? Was he asking about my pain in general or pain in particular? Did he mean the injection or not? If it was about the injection, wouldn't the nurse be asking the question?

"Does it hurt?" the doctor and nurse asked together.

"Um...." Everything hurt. What did he mean by "it"? Think, think...!

"Does it hurt?!" and now I can hear an edge of impatience in the doctor's voice. I was taking too long to answer.

"Eh, yes, a bit," I had to say something.

The nurse adjusted the cannula and continued injecting and the pain was not as bad as before.

The next day, I decided to google the procedure with the cannula to see what had happened and if there was something I was missing. It turns out that the big injection is a saline flush to ensure that the cannula is properly situated in the vein. If the cannula has missed the vein, then the flush will force fluid into the surrounding tissue and the pressure will feel quite painful. If the cannula is properly in the vein, then there isn't much pressure or pain. So, the question I was supposed to answer was really, "When I, the nurse, press this plunger, does the level of pain in your hand increase from its current level?" That would have been an easy one to answer: "Yes."

Parents
  • I have 4 stages or layers of information accessible on my smartphone to aid me in such situations.

    The first 2 layers are accessible to a medic even if my smartphone is locked.

    1) Locked mobile: Essential medical summary sentence visible on the lock screen / safety & emergency setting (allergy, medication and Autistic).

    2) Locked mobile: In my Contacts on my mobile,; I have key contacts with their name starting with "ICE name" and "ICE1 name", ICE2 name" (just these members of my ICE Group of Contacts are visible to a medic via the safety & emergency function from the lock screen):

    https://healthwatchnorthumberland.co.uk/four-easy-steps-to-add-in-case-of-emergency-details-to-your-phone/#:~:text=Click%20on%20this%20option%20then,your%20app%20store%20for%20options.

    3) Unlocked mobile: When I have unlocked my mobile, on the hone screen, I have a Notes message / prompt pinned there - to show to a medic - which reads:

    "Emergency":

    Please See:

    - Alert Card

    - Lanyard / Wrist Band / Badge

    - ICE* Contacts

    - ICE Folder Docs

    (Medical Passport &

    Communication Aids)

    4) Unlocked mobile: ICE Documents Folder:

    I have put an ICE (In Case if Emergency) documents folder on my mobile. 

    In there, I keep things which I can point to in a healthcare setting (when overwhelm can mean ready access to spoken words fail me). 

    For example:

    - my NAS Health Passport 

    - my local NHS authority Neurodivergent Passport (more about environment issues like bright lights, startling noises, wearing noise cancelling headphones etc.)

    - universal pain assessment tool diagram (I can point to the relevant area which best matches my pain experience at the time

    https://www.researchgate.net/figure/Universal-Pain-Assessment-Tool-format_tbl1_383809157

    - a body map diagram so I can point to the image to explain where something is painful (it can be easier to show on the diagram than where on myself)

    https://www.learningdisabilityservice-leeds.nhs.uk/get-checked-out/resources/nhs-in-leeds/gps-and-practice-staff/pain-tool-kit

    - a summary diagram of the Autistic Doctors International SPACE Framework (so I can point to which communication area / the experience aspect is causing me extra difficulty - such as needing more time to answer questions)

    https://www.magonlinelibrary.com/doi/full/10.12968/hmed.2023.0006

    - a copy of my latest treatment clinic / GP appointment letter / test feedback report (this may give the current medics access to another clinician who spoke with me recently under less problematic conditions)

    Also (maybe, one day, before too much longer, we can but hope):

    a) there is also, as part of NHS Digital; a service calked SPINE. 

    The idea is that GPs can upload a summary of a patient medical record to subsequently be accessible to other health and social care professionals.- I am not sure quite how "joined up" or mature in use the SPINE service use has become

    (which is why I have set up my own 4 layers of information on my mobile):

    https://digital.nhs.uk/services/spine

    b) In theory, there is also the NHS "Patients Flag Service" where, for example, a GP can post a note about a patient's "reasonable adjustment needs, impairments and underlying conditions":

    Again, this service seems to have variable implementation in the real world:

    https://digital.nhs.uk/developer/api-catalogue/patient-flags-service---fhir-api

    c) as part of "Assuring Transformation" in support of Learning Disability / Autism patients - there is sometimes reference made to a "Register".  "This register (as required by the commitment in ‘Transforming Care: A national response to Winterbourne View Hospital’ and the ‘Concordat’) should have been established by the former Primary Care Trusts in January 2013 and handed over to Clinical Commissioning Groups on 31 March 2013.". However, still there seems to be NHS language around this topic along the future tense style of "we will ..." 

    d) in theory, (3 years on since the Health and Care Act 2022 introduced a statutory requirement that CQC-registered providers must ensure their staff receive learning disability and autism training appropriate to their role), where NHS staff are supposed to complete Tier 1 / Tier 2 layers (depending upon their role functions) of mandatory Oliver McGowan training on Learning Disability and Autism... I have seen some counties are still recruiting the training rollout team for implementing this training - so this seems variable depending upon your area.  Still, the future tense "will be ..." features in the supporting data collection and reporting services.

    https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

    In summary:

    What I am trying to say is: we in the Autism community still seem to need to find ways to continue to self-advocate in health and social care settings - as the wheels of progress grind slowly towards not having to individually educate people on the basics of Autism.

Reply
  • I have 4 stages or layers of information accessible on my smartphone to aid me in such situations.

    The first 2 layers are accessible to a medic even if my smartphone is locked.

    1) Locked mobile: Essential medical summary sentence visible on the lock screen / safety & emergency setting (allergy, medication and Autistic).

    2) Locked mobile: In my Contacts on my mobile,; I have key contacts with their name starting with "ICE name" and "ICE1 name", ICE2 name" (just these members of my ICE Group of Contacts are visible to a medic via the safety & emergency function from the lock screen):

    https://healthwatchnorthumberland.co.uk/four-easy-steps-to-add-in-case-of-emergency-details-to-your-phone/#:~:text=Click%20on%20this%20option%20then,your%20app%20store%20for%20options.

    3) Unlocked mobile: When I have unlocked my mobile, on the hone screen, I have a Notes message / prompt pinned there - to show to a medic - which reads:

    "Emergency":

    Please See:

    - Alert Card

    - Lanyard / Wrist Band / Badge

    - ICE* Contacts

    - ICE Folder Docs

    (Medical Passport &

    Communication Aids)

    4) Unlocked mobile: ICE Documents Folder:

    I have put an ICE (In Case if Emergency) documents folder on my mobile. 

    In there, I keep things which I can point to in a healthcare setting (when overwhelm can mean ready access to spoken words fail me). 

    For example:

    - my NAS Health Passport 

    - my local NHS authority Neurodivergent Passport (more about environment issues like bright lights, startling noises, wearing noise cancelling headphones etc.)

    - universal pain assessment tool diagram (I can point to the relevant area which best matches my pain experience at the time

    https://www.researchgate.net/figure/Universal-Pain-Assessment-Tool-format_tbl1_383809157

    - a body map diagram so I can point to the image to explain where something is painful (it can be easier to show on the diagram than where on myself)

    https://www.learningdisabilityservice-leeds.nhs.uk/get-checked-out/resources/nhs-in-leeds/gps-and-practice-staff/pain-tool-kit

    - a summary diagram of the Autistic Doctors International SPACE Framework (so I can point to which communication area / the experience aspect is causing me extra difficulty - such as needing more time to answer questions)

    https://www.magonlinelibrary.com/doi/full/10.12968/hmed.2023.0006

    - a copy of my latest treatment clinic / GP appointment letter / test feedback report (this may give the current medics access to another clinician who spoke with me recently under less problematic conditions)

    Also (maybe, one day, before too much longer, we can but hope):

    a) there is also, as part of NHS Digital; a service calked SPINE. 

    The idea is that GPs can upload a summary of a patient medical record to subsequently be accessible to other health and social care professionals.- I am not sure quite how "joined up" or mature in use the SPINE service use has become

    (which is why I have set up my own 4 layers of information on my mobile):

    https://digital.nhs.uk/services/spine

    b) In theory, there is also the NHS "Patients Flag Service" where, for example, a GP can post a note about a patient's "reasonable adjustment needs, impairments and underlying conditions":

    Again, this service seems to have variable implementation in the real world:

    https://digital.nhs.uk/developer/api-catalogue/patient-flags-service---fhir-api

    c) as part of "Assuring Transformation" in support of Learning Disability / Autism patients - there is sometimes reference made to a "Register".  "This register (as required by the commitment in ‘Transforming Care: A national response to Winterbourne View Hospital’ and the ‘Concordat’) should have been established by the former Primary Care Trusts in January 2013 and handed over to Clinical Commissioning Groups on 31 March 2013.". However, still there seems to be NHS language around this topic along the future tense style of "we will ..." 

    d) in theory, (3 years on since the Health and Care Act 2022 introduced a statutory requirement that CQC-registered providers must ensure their staff receive learning disability and autism training appropriate to their role), where NHS staff are supposed to complete Tier 1 / Tier 2 layers (depending upon their role functions) of mandatory Oliver McGowan training on Learning Disability and Autism... I have seen some counties are still recruiting the training rollout team for implementing this training - so this seems variable depending upon your area.  Still, the future tense "will be ..." features in the supporting data collection and reporting services.

    https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

    In summary:

    What I am trying to say is: we in the Autism community still seem to need to find ways to continue to self-advocate in health and social care settings - as the wheels of progress grind slowly towards not having to individually educate people on the basics of Autism.

Children
  • Thanks, DAR_25, those are some great tips. Though my ADHD brain just exploded a bit, so I might have to get my carer (wife) to go through that with me and see what I should apply to my situation.

    My strategy for dealing with (somewhat) emergency situations has always been to crawl under a rock.

    I fell off my bike a few years back and landed on my (helmeted) head and elbow. I picked myself up, staggered to the side of the road, promptly went into shock and nearly passed out. After resting for a while, I managed to straighten the bike out and limp home by myself. Should I have called an ambulance? Yeah, probably.

    I had a lump on my forehead and a headache for three days (probably a slight concussion put me into shock after the event).

    I had a bruised hip and limped for two weeks.

    I had a cut on my elbow and significant pain there that lasted about two months (maybe a fracture, or some other damage).

    I had pain in my shoulder that meant I couldn't raise my arm to the side and couldn't sleep on that side for ten months (probably torn ligaments).

    Did I call an ambulance? No. Did I go see my GP? No. Did I seek any treatment at all? No. I just took a couple of ibuprofen and grabbed a bag of peas from the freezer and hoped it would all go away. It did: my shoulder was completely pain free after about fourteen months.

    Did I learn anything from all that? Nope.