Pain is personal. Talking about it should be too.
For children and young people living with long-term pain.
More than one way to answer, and none of them is the wrong one.
how much?
Why
A pain scale is built to compare.
Describing is a different job.
Thresholds, decisions and waiting lists all run on being able to set one child’s pain beside another’s, and the instrument does it well. But pain is personal. What one child means by a five is not what another means by it. So a child arrives with something particular to say, and is asked first, and often only, for a number. A number may not be a child’s language for pain, and we’re asking the wrong people to translate a complex experience into clinical data.
This Much is not against the number. It is against the number coming first. The child answers in a register they actually have, and can teach the app what their own quiet, middle and most really feel like. The aim is to translate that into a clinical value when one is needed, without making the number the child’s starting point. A number should not be the price of being heard. Neither should looking like you are in pain, when pain is every day.
A different starting point
A colour is a voice,
not a verdict.
Green is not worse than blue. A child who reaches for green is not a more serious case than a child who reaches for blue. They have picked their colour, the way you’d pick a word.
How much lives in how deep the colour goes. That is the axis that quietly teaches nought-to-ten, without ever asking a child to start there.
Colour is one voice in a chorus of many. Each works the same way: whichever a child picks, how much lives inside it.
The diary
Every answer lands on the water.
One leaf, one moment, on a river you can scroll back through. No streak, no score, no week anyone fell behind on. A quiet fortnight looks like a quiet fortnight, and that is allowed to be the whole story.
For some children, being asked how bad it is, over and over, is not a help. That is as true at sixteen as at four. So nothing here asks every day, and nothing on the water announces how bad a day was.
Tap a leaf and it tells you the rest, when you want to know and not before.
A caregiver can add what they noticed afterwards. Their perspective can add context but it never replaces the child’s. This is their record and their voice comes first.
Who holds it
The record is theirs.
However long it runs, it belongs to the person it is about. Services change, consultants change, and the move from children’s services to adult ones changes everything at once. The record is the one thing that doesn’t have to start again.
A clinician gets a view in with your consent, not custody. When the appointment comes round, the whole stretch prints to a page you can hand across the desk.
This Much shows what happened, and what helped. Noticing what helps is the first step to a toolkit that fits this person: part of it from a clinic, part from people who already know them, part from things they tried themselves. It never advises, never scores a family, and never says what to do next.
The first version is built.
In Sheffield, by a family who needed one. The diary is the first piece, and deliberately so: it is the part that had to work before any of the rest was worth building.
Now comes the important bit: putting it in people’s hands. We want to find out what children and families actually make of it: what works, what doesn’t, and whether the record captures something worth carrying with them. If you’d like to know when there’s something to try, or you work somewhere this ought to reach, leave an email address.