A demonstration, made for no one real. Not medical advice.
A demonstration of the kit with an invented person: the records and the words on these pages were made up. It is not medical advice and it decides nothing. Nothing typed into these pages leaves this browser, and on this copy Send goes nowhere.
Who does what
The person who made these pages is a care systems liaison: they work on the records and the questions, and the clinicians named in these pages do the medicine. Nothing here is medical advice: no diagnosis, no treatment advice, no medicine changes. They help you gather your own records, put your own history in one place, write down the questions you want answered, and prepare one page to hand to each clinician. They do not call your clinicians or sit in your appointments; the kit is built so that you do. They work for you, not for any hospital, insurer or doctor (the scope the field certifies as independent patient advocacy). Where AI tools were used to organise or review material, your names were removed first, the pages say what came from where, and those tools are not medical advice either. Everything here is yours: you decide what goes to whom, and you can have all of it back or deleted at any time.
This kit is for visits, not emergencies. A fall with a knock to the head, new confusion, chest pain, trouble breathing, or a reading past the number your clinician gave you (the sitting number the practice wrote on her card): call the clinic today, or the emergency number.
Written with AI, and read against the records. In a real kit these pages are drafted and drawn with AI from the records they cite and the family's own words, and every page is then read against those records by the person who made it. On this demonstration there are no records: every name, date, medicine and reading was made up. The records a real kit cites can themselves be wrong or out of date, and only that person's clinicians can tell them so. Nothing here is medical advice, and nothing here decides anything.
Written with AI, read against the records. In a real kit; on this demonstration the person and the records were made up. The full note is under Who made this.
This is a demonstration of the kit with an invented person, Marguerite. Every name, date, medicine, reading and letter on these pages was made up; nothing here is about anyone real, and nothing here is a record a clinician has seen. The kit is made by a care systems liaison, who works on the records and the questions while the clinicians do the medicine: no diagnosis, no treatment advice, no medicine changes. A kit for a real person carries no names.
Pain and numbness chart
A place to record where it hurts, where the feeling has changed, and how bad each one is, in the same terms her clinicians already use. Everything saves on this device as you go. Nothing is sent anywhere unless the send button is pressed.
The hurries today, how many
The bowel today, 0 to 10
Tap a number and today is saved on this device; tap another to change it. Once a day, in the evening.
That is the whole job. Everything below is for a visit that asks for more.
Every visit entered on the Companion is marked on its day, so the chart shows whether a change followed a visit.
The things that are hard to say out loud
Written down so nobody has to find the words first. Read one, or open it in the room and hand the page across. Each fold says what it is in plain words, how many people have it, what to say, what can be done, and which of her clinicians to ask. Written by an advocate, not a clinician, from a sourced research round; every figure links to where it came from, and nothing here decides anything.
The hurrying, and the leak before the door
What it is. The bladder gives very little warning and sometimes does not wait. The name for the hurrying is urgency; when it does not wait, urge incontinence. It is a muscle and a nerve signal, not a failing of will or of character, and it is the reason she cannot be much more than an hour from a toilet.
How common. In a national survey, 53 percent of women aged 20 and over reported some leaking in the past year. Of the women leaking weekly who had never mentioned it, a quarter thought it too small to raise and a fifth thought it was simply age.
The words to use in the room. I get very little warning, and some days I do not make it. I wear pads to go out.
What can be done. Bladder training, the pelvic floor work that was started and then stopped, a look at every medicine and at what she drinks, and the tablet she is already on, which the clinic can judge only if it hears how many hurries a day there are now. The tally on the Companion is the number they need.
Who to ask. Bladder clinic, Pelvic floor, Primary care
The days with nothing, and then the leak
What it is. For days nothing happens, then the bowel empties without warning. When the bowel is backed up, softer stool above can slip past what is hard and come out unbidden; the name is overflow, and it is one of the commonest ways bowel leakage happens in someone who is also constipated. The bladder tablet may be making the constipation worse; that is a question for the clinics, not a settled fact.
How common. About one adult in twelve in the United States has had a bowel accident in the past month. Among those who never raised it with anyone, more than half said it was not serious enough, and a third were embarrassed. Only about a third of people with constipation have ever discussed it with a clinician.
The words to use in the room. For three or four days nothing happens, then it comes without warning. My sister has been buying me stopping tablets from the chemist.
What can be done. The sachets paused in January have nobody's name on the restart; the stopping tablets from the chemist, the sachets and the night tablets pull in opposite directions, and no clinic has the whole list. The first thing to be done is for one person to see the whole tin.
Who to ask. Bowel clinic, Pharmacist, Primary care
The soreness nobody has asked about in three years
What it is. After the menopause the skin of the vagina and of the bladder opening thins and dries; the name clinicians use is genitourinary syndrome of menopause, a mouthful for soreness, dryness, burning, and water infections that keep coming back. It does not get better on its own. The oestrogen cream she was given three years ago is a treatment for exactly this, and the burning when she passes water can be this and not the bladder at all.
How common. In a survey of 8,081 women past the menopause, 38 percent had at least one of these symptoms. Of the women who had them, only about half had ever raised it, and most expected the clinician to ask first. In another survey of women who had never been treated, almost three quarters had never discussed it, most of them assuming it was simply age.
The words to use in the room. It is sore and dry, and it burns when I pass water. I was given a cream three years ago and nobody has asked about it since.
What can be done. The cream, used the way it was meant to be used, or a different route for it; and a way to tell the burning of this from the burning of an infection, so that not every burn becomes a course of antibiotics.
Who to ask. Menopause clinic, Primary care, Bladder clinic
Being seen on her own for a few minutes
What it is. A few minutes alone with the clinician, without her sister in the room, is an ordinary thing to ask for and an ordinary thing for a clinic to give. It is not a slight to her sister. Some things are easier to say without the person who does her laundry sitting beside her.
The words to use in the room. Could I have a few minutes on my own with you today?
What can be done. Say it at the desk, or at the start of the visit; her sister can wait outside for that part and come back in for the plan.
Who to ask. Primary care, Bladder clinic, Bowel clinic, Menopause clinic
The phone she cannot hear
What it is. She cannot hear a phone call, or a voice across a room with other noise in it, and the practice does its appointments by phone. Hearing that is not treated makes every other history less accurate: questions are missed, instructions are half heard, and it can be mistaken for confusion.
How common. In 2024, 15.7 percent of adults in the United States reported difficulty hearing, and about a third of older adults have hearing loss. Of those aged 20 to 69 who would be helped by a hearing aid, only 16 percent have ever used one.
The words to use in the room. I cannot hear on the phone. Please see me in person, and please write that on my record so every clinic knows.
What can be done. A hearing test, which has never been done; a note on every clinic's record that phone appointments do not work; the chair turned so she can see the face that is speaking.
Who to ask. Hearing, Primary care
Drinking less so she can go out
What it is. She drinks less on the days she goes out so there is less to leak. It buys the afternoon and costs her later: less water means harder stool, more water infections, and dizziness on standing, and the bladder does not learn to hold more by being given less.
The words to use in the room. On days I go out I drink less on purpose, so that I can go.
What can be done. The clinic can say what to drink and when, so that the outing is possible without the price. This is the kind of thing that never gets said because it sounds like common sense.
Who to ask. Bladder clinic, Primary care
What her sister carries
What it is. The pads, the laundry, the bedding, the tally on the calendar, and the stopping tablets from the chemist. Her sister has stopped mentioning any of it. None of it is on any clinic's list, and a tablet bought in her sister's name never reaches a pharmacist's record.
The words to use in the room. My sister does the laundry and buys the pads and the stopping tablets. Nobody has asked either of us about that.
What can be done. Say it once, at the visit, in her own words or her sister's. The pharmacist's yearly review of the whole tin, which has not happened yet, is the one place all of it can be written down together.
Who to ask. Pharmacist, Primary care
In depth: where it is, the scales a clinician may ask for, what kind of pain it is
A general drawing, not a scan or an image of anyone's body. The front of the body is to the left. Three organs share one floor of muscle, which is why three clinics can each be treating one part of the same thing.
Why bother filling this in. At a visit there is rarely time to reconstruct a month. The four scales below are the ones specialists most often reach for, so answering them in advance means the appointment starts from a record instead of from memory. Two of them, the pain scale and the PEG, are what a pain prescriber is expected to use to judge whether treatment is working.
What three days of this looks like
A worked example, so the point of filling it in is visible before anyone spends time on it. Press the days, or press play. The places are invented for an invented person.
Example only, an invented day
What the three days show that one appointment cannot. On its own, day two looks like a bad day. Across three, a pattern appears: the heavy pressure low down climbs with the days with nothing and eases when the bowel goes, the hurries climb with it, the burning when passing water is the same every day whatever the bowel did, and the hip never changes. Those are three different problems for three different clinics, and they are invisible in the sentence "I'm not too bad." Pain is not the first thing you would say about your days; the hurries and the days with nothing are counted on the calendar tally, and this page keeps the places beside them.
Filled in for a fortnight, the average at the bottom (the form's authors call it the PEG score) is a number a pain prescriber may ask for when deciding whether treatment is working. About 30 per cent improvement is the change that counts as meaningful.
The places marked in this example are invented, to show what three days side by side can say. Your own marks start from what the person already knows about, if anyone has written those down under SEEDED in the page, or from a blank body.
1. Where it is
Tap the body to place a mark. Drag a mark to move it. Tap a mark to select it, then set what it feels like and how bad it is. Red is pain, dark grey is numbness or altered feeling.
Front and back. The back view is seen from behind, so her left is on your right; switch to it for the tailbone, the shoulder blades, the sitting bones and the heels.
Every place at once
One line per place, plus the average across all of them. This is the view that shows one thing getting worse while another stays flat, which is the distinction that changes what a clinician does about it.
One thing a drawing like this cannot do. How much of the body gets shaded is useful for showing extent and for tracking change over time. It does not say anything about a person's state of mind. The largest review of pain drawings found that none of the methods tested could identify distressed patients, so if anyone reads a spread-out drawing as evidence about her rather than about her body, that reading is not supported.
2. The three-question scale her prescriber is expected to use
PEG. Three questions covering pain, enjoyment of life, and general activity. It is in the public domain, it takes under a minute, and CDC guidance on tapering opioids points to it as the measure of whether treatment is working, with about 30 percent improvement as a meaningful change. This is the single most useful thing on this page to have filled in before a pain appointment.
1. What number best describes your pain on average in the past week?
2. What number best describes how, during the past week, pain has interfered with your enjoyment of life?
3. What number best describes how, during the past week, pain has interfered with your general activity?
The average of your three answers, rounded, which the form's authors define as the PEG score: not answered
Krebs EE, Lorenz KA, Bair MJ, Damush TA, Wu J, Sutherland JM, Asch SM, Kroenke K. Development and initial validation of the PEG, a 3-item scale assessing pain intensity and interference. Journal of General Internal Medicine, 2009;24:733-738. Item wording from the Washington State Agency Medical Directors Group form, which states the PEG is freely available in the public domain. CDC reference: Pocket Guide, Tapering Opioids for Chronic Pain.
3. What kind of pain it is
These two sets separate the kind of pain that comes from tissue and joints from the kind that comes from nerves. That distinction matters, because nerve pain often responds to entirely different medicines from the ones used for tissue and joint pain.
Answer these one pain at a time. These scales were built and tested around a person with one main pain. The older someone gets, the more kinds of pain they carry, and a low back, a hand and a knee should not be averaged into one answer. So choose which pain you are answering for: each place you have marked above is listed, and "pain as a whole" is there only for a clinician who asks for the whole-body form. The wording and the five answers are the published ones; only the scope is chosen by you, and the printout says which place each answer is about.
Answering for:
Nerve-type sensations, in the past 7 days
PROMIS Scale v2.0 Neuropathic Pain Quality 5a, item wording as published; HealthMeasures' terms of use apply, and this kit is not a PROMIS form. Response set: not at all, a little bit, somewhat, quite a bit, very much.
Tissue-type sensations, in the past 7 days
Five descriptors (sore, tender, achy, deep, steady) asked in this kit's own wording. Not a PROMIS form.
Why not the longer questionnaires. Several of the standard instruments cannot be reproduced on a page like this. The Brief Pain Inventory, McGill, painDETECT and the DN4 are licensed or their terms could not be confirmed, and three of the DN4 questions need a clinician to touch her, so a form filled in at home could not produce a valid score anyway. Everything above is either public domain or explicitly free, so this page prints instruments it is allowed to print, and names the rest.
4. The instruments specialists reach for
Worth recognising by name, so that when one of these appears at a visit it is familiar rather than one more form. If any have already been done, the scores are on record and worth asking for. Which ones apply depends on the person; add the ones this person's own specialists use, once known.
| Instrument | Who uses it | What it measures |
|---|---|---|
| Brief Pain Inventory | Pain and palliative services | Worst, least, average and current pain, plus interference with activity, mood, walking, work, relationships, sleep and enjoyment. PEG above is its short public-domain relative. |
5. What this page is not
It is not a diagnosis, not a score anyone is obliged to accept, and not a substitute for the sensory examination that is how altered feeling is actually graded. Light touch, pinprick, monofilament testing and two-point discrimination need a clinician and a room. What this page does is arrive at the appointment with the patient-reported half already done, in the vocabulary the clinician is expecting.
Sources for everything reproduced above. PEG item wording and public-domain status: Washington State AMDG PEG form; scoring confirmed by the Pain Management Collaboratory, which states scores range 0 to 10 by averaging the items. Pain scale anchors: PROMIS numeric rating scale, free with no permission required, and the wording with the strongest formal backing is pain as bad as you can imagine. Nerve and tissue descriptors: PROMIS Pain Quality 5a scales via the PhenX Toolkit, which states these protocols are freely available and permission is not required. Body map precedent: the Michigan Body Map, University of Michigan, also free through PhenX; the outline here is drawn for her body rather than borrowed. Limits of pain drawings: Shaballout N, Neubert T-A, Boudreau S, Beissner F. JMIR mHealth and uHealth, 2019;7(9):e14569.
A demonstration kit. The method and the tools are real; the person is invented.