I am building the page my family never had.
My father-in-law lived with Parkinson's for ten years. When an ambulance took him to the wrong hospital, nobody could lay hands on what he was taking, what he was allergic to, or who to call, and the last weeks of his life were far harder than they should have been. I would like every family to have that page before they need it. Before I build any more of it, I want to hear from people who are doing the caring now.
What I have in mind
It is deliberately simple. One place that holds everything about a person's care, filled in from the things you already have, and handed to whoever needs it in the form they already use.
Everything in one place
Forward the discharge letter. Take a photo of the pill box. Dictate a note after the GP visit. The record fills itself in, and shows you where each fact came from, so you can check it.
Handed over in seconds
A printed sheet for the fridge, with a code the paramedic can scan to see medications, allergies and who to call. The same summary on the phone's lock screen, and a link you can text to the GP or the agency. When someone scans the code, you know.
The paperwork, produced for you
A one-page summary for the hospital. The evidence for a carer's assessment or Attendance Allowance. The "This is me" sheet the ward asks for. You read it before it goes anywhere.
The family kept in step
Brothers, sisters, a neighbour, the paid carer: Each sees as much or as little as you decide. The ones who never open anything get a short summary once a week.
I should say that this is not a replacement for Jointly, the free sharing app from Carers UK. I would expect many families to use both, and I will happily point people to it.
What I am asking
Thirty minutes of your time, or fifteen, whichever suits you. There is nothing to prepare and nothing to buy. I want to know how you keep track of things like medications, appointments and hospital letters, and what has gone wrong. That is all.
Talk to me for 30 minutes
By phone or video, at a time that suits you, including evenings and weekends. You can skip any question and stop whenever you like. Everyone who takes part gets the finished family plan free for life, and a say in what gets built.
Booking runs through Cal.com. The privacy notice says what is collected and why.
Or answer the questions in your own time
The same questions, as a questionnaire you can fill in whenever suits, in about fifteen minutes. A mix of tick boxes and short written answers. No names are needed, and you can stay anonymous if you prefer.
Or leave your email and I will be in touch
Why I am doing this
My mother is 90 and coming to the point where she will need care. I have seen what that means from close by, and I know how it can go.
My father-in-law had Parkinson's for the last ten years of his life. His wife, my wife and her sister carried it between them: The paperwork, the medicines, the appointments, and the constant working out of who was doing what. It was complicated, and there was a great deal to look after.
Near the end, when dementia had set in, he came down with a cold. An ambulance was called, and it took him to the wrong hospital. That one mistake set off a long chain of events that made his death a great deal more painful than the peaceful one he deserved. Nobody had, on one page, who he was, what he was taking, and where he was supposed to be.
That page is what I want every family to have, without having to build it themselves in the middle of a crisis. If you are looking after someone, I would very much like to hear what you wish you had to hand. I will listen far more than I talk.
Tim Brocklehurst
tim@familycarerecord.co.uk · 07549 020841