Annmaree Watharow and Susannah McNally
So, we have our super team in place (see part one). What else do we need to have a better health or hospital experience? We need lots of systemic and attitudinal changes, but we can help ourselves (and our health caregivers) by being prepared.
In order to be better prepared for hospital and healthcare encounters, we (people living with single and dual sensory loss) may need our families, health and social care professionals and practitioners to help curate and collect what is needed. Having our important information at hand, both electronically and in hard copy, saves time and reduces communication stress with our health providers. If the admitting doctor is spending time trying to work out what those little white tablets we take are called, they aren’t focusing on telling us what we need to know about what will happen next. Staff won’t have time to answer our questions if we don’t have our important information organised.
And we cannot stress enough that this information needs to be in both electronic form and paper hard copy. Mobile phone batteries don’t last indefinitely, and we aren’t always well enough to find our phones, remember passcodes and navigate to where the information such as photos of our medication packets with doses and drug names.
So, let’s look at Annmaree’s hospital preparation strategies, devices and resources as an example.
1. MOBILE PHONE
I hope that the Department of Health will one day have a care passport app (with hard-copy contents for the cloth bag) so there is a systematised way to gather this information that is sanctioned, consistent, and encouraged by health authorities and which staff are familiar with. Many disabled people’s organisations have advocated for system-wide health care passports, e.g. Julian’s Key, but the departments of health have yet to engage (Queensland Government, 2022). Some health professionals have clinical document architecture (CDA) files that can be shared to patient smartphones, I’m not that organised but will share what I have and where to find it.
What’s on the phone and why:
- Photos of medicine and tablet packets showing the contents and dosage or photos of prescriptions.
- A folder of up-to-date health information, including allergies, medicines, past medical and surgical history, family history, and immunisation history, especially for tetanus as accidents can increase our risk there for example. The health information needs to include not just the conditions we have, like diabetes or high blood pressure, but also detailed information on our impairments such as sight and/or hearing loss.
Mobile phones are also useful for speech-to-text and apps such as Otter.AI, Ava speech-to-text, and text-to-audio might be important for some of you too. I also have Seeing AI, which is great for pesky hospital menus that no one can see, it takes a photo and then puts the information in a list with settings customised for your sensory loss, e.g. dark moded and very large font. Alternatively, it can read out what’s on the menu to you. Seeing AI can also describe what is in your hospital room. Be my eyes also can do that.
Now, repeating the advice I gave earlier about needing hard copies as well as electronic information: HOSPITALS ARE PLACES OF LOSING THINGS (not just body parts, dignity and so forth but also information), so make sure you have hard copies as well as information on your phone. Phones are not just for storing important information; they are for entertainment and de-stressing, if you have hearing (lucky, lucky you) and listen to music, include earbuds and playlist information because staff may be able to set you up with the sounds you love if you are too unwell to do so yourself. Preload audiobooks if this is something you can enjoy.
2. MY BAG
So, a going to hospital bag is important. My bag is turquoise with a tactile pattern on it so I can easily tell it apart from other cloth bags. You can get fuzzy stickers to attach so that you (and everyone else) know which bag is the hospital bag. It should live somewhere easy to find in a hurry by you, the paramedics or anyone else at home. I keep mine hanging on the bedroom door. Others keep it on a hall table, in a drawer or hanging in a wardrobe on a coat hanger. Just make sure everyone in your network knows where it lives.
Now what’s in the bag?
- Health Information on paper that is a copy of what is in the health folder on my smartphone, This includes emergency information, contact details for important family members and friends, super team members, health information, Medicare and health insurance card numbers, a list of medications and dosages, but I am not that organised at present. I have my allergies, health, and disability and impairment information in hard copy as well as on my phone.
- Hard copies of communication information, laminated deafblind manual alphabet plus printed sheets to spare. It is sad but true that hospitals are places where things are lost, especially patient belongings and printed information, so I have several copies. In an ideal world, I would have a pad with tear-off sheets, but that day is not here (yet).
- Health-haptic communication sheets: This is a sheet with the touch messages I use and a description of how they are performed and what they mean. If I am lucky, my interpreter, a family member, or my support worker may visit and demonstrate them in person, in situ. If I am not too unwell, I can show staff too. The ones that are the most useful for me are a touch on the shoulder (I am here) followed by a cross drawn on shoulder or hand (I am a doctor or nurse), and a cuff of thumb and index finger on the upper arm to indicate blood pressure (so reassuring in the early hours of the morning when I am woken for observations). I use this cuff signal for the whole group of temperature, pulse, blood pressure, respiration rate, oxygen level, wound inspection, drain inspection, and so on. For me, it sends the message that predictable things are going to happen. I also like the injection touch signal of a light pinch on the injection site (such as the fingers, or crook of the elbow, or abdomen). The surgeon can also grasp my thumb to tell me it all went well. These touch messages are combined with finger spelling for more complicated messaging such as going for an X-ray. This is not a language but a touch messaging system, so it is easy for staff to learn, and I ask for both charts to be taped near my bed. We will look at touch messaging systems in the next two chapters in more detail. But whatever system/s we use, they should be documented so that staff can learn and use them. There is more on this in Part 3.
- Other bits of paper: A list in big letters saying “bring iPad, bring iPhone, bring chargers, bring hearing aids, etc.”. It is not sensible, for the planet or the pocket, to have duplicate devices just for the going to hospital bag. We have a list of the apps we use as if we are really sick or not able to move much, we might need help from staff. A sheet with the common apps I use (I am not a techno whiz so there are a great many that younger or more tech-savvy people know of and use). I have instructions on what each app holds and how to access it:
- The health app has the most important health details such as allergies, main conditions, and medications.
- The Kindle app holds my books and is set to my preferred (very large) font style.
- The Notes app can be used for speech-to-text—it is on dark mode and set to large font, so it is ready to go for my particular needs.
- The on-screen keyboard can also be used as an aid.
- E-reader app
- Spotify playlists which I am discovering late in life to be rather FUN!
- A thick pen and notebook may also work as a communication tool (I have a little residual vision). I use a Pentel Sign Pen because it does not bleed and I am able to see it, whereas I cannot see biros or thinner felt-tip markers. I need more than one communication method; for example, if I were to have cataract surgery, or I am unwell or not wearing glasses, pen and paper will fail me. One communication method cannot be relied upon in all settings. The staff need to print in big letters, too. This is written on the front of the front of the notebook.
- A small whiteboard and suitable markers and a packet of wipes or tissues. My support worker found these in a two-dollar shop, and they have been brilliant for those wishing to communicate in hospital with me but obviously only work if you have some residual vision. Sometimes, I just need a word or phrase to understand and contextualise what is going on, such as “Doctor Smith”, “Nurse Jones”, “physio”, or “new drip” (meaning a cannula is going to be inserted or re-sited).
- An orange silicone wristband saying, “I AM DEAFBLIND.” In fact, I have about three in my bag just in case I am forced to take it off, such as when going to theatre. But you just choose the wristband with what you want, e.g. I have low vision, I am blind. One way, if you can’t find any wristbands, is to use a big marker pen on a bland silicone wristband to say what you want. These wristbands are great for the invisible disability and have been the best supports because, wherever I go, they identify me to staff as a patient needing communication support, and they remind the staff at every encounter, every shift, every day and night. They are portable, cheap, and effective.
- A white cane: This is very useful for finding bathrooms and avoiding all those trolleys that are in the way
- Hearing aid batteries in a little bag. Two packets.
- Anything else you need should be included, my bag is specific to me, but your bags will all be different. Some of you will only have two or three things in it, others will have loads of things.
RESOURCES
Top 5 or My Health Matters Folder to help create this resource.