Heart failure admin: the daily record, the numbers and the changes log

Put the phone numbers where a stranger would find them

The most useful page in a house where somebody has heart failure is a sheet on the fridge with the phone numbers on it, in order, in large print. Not in a phone. On the fridge.

Write who to call first, who to call second, and what the after-hours number is. Ask the clinic directly: after five o'clock and at weekends, who answers, and is it a different number. Write the answer with the date you asked. Add the pharmacy, the primary care office, and two family contacts with mobile numbers.

Make the same page in wallet size and put it in your parent's bag. Photograph it and keep the photo on your own phone.

Then put the date at the bottom and check it every three months, because clinic numbers change and nobody announces it.

• First call, second call, after-hours — in that order, in large print
• The cardiology clinic and whether the number differs out of hours
• Primary care office and the pharmacy
• Two family contacts with mobile numbers
• Insurance plan name and member number
• Date last checked, at the bottom
• One copy on the fridge, one in the bag, one photo on your phone

The daily record, if a clinician asked for one

Many heart failure clinics ask families to keep a short daily record. If yours has, your job is to make it easy to do and easy to read, not to decide what it means.

Ask exactly what they want written down, at what time of day, and how they want to see it at the next appointment. Then build a grid with precisely those columns. Same time each day, same place, same page.

Put the sheet where the recording actually happens — beside the scales, on the bathroom door, wherever it is — with a pen tied to the clipboard. A sheet in the binder upstairs gets filled in from memory, which makes it useless.

Take the pages in on appointment days, in date order. Note on the sheet any day it was not recorded and why, factually. Gaps that are explained are information; gaps that are unexplained are noise.

• Ask what to record, when, and how to present it
• A grid with only the clinician's columns
• Kept where the recording happens, with a pen attached
• Same time of day, every day
• Missed days marked with the reason, plainly stated
• Taken to appointments in date order, then filed
• No interpretation written on the sheet

The medication changes log — the record nobody keeps and everybody wants

Medication lists in heart failure change often, and they are changed by more than one office. A list showing only today's state loses the history, and the history is what gets asked about.

Keep two pages. The first is the current list, printed and dated, exactly as the prescriber wrote it. The second is a changes log: date, what changed, who changed it, and where you heard it — appointment, phone call, letter, or discharge.

When a change comes by phone, write it down while you are still on the call, including the name of the person telling you. Then ask for it in writing or ask that it be sent to the pharmacy, and note which.

Take both pages to every appointment and to any hospital admission. Book a review with your parent's regular pharmacist whenever several things have changed at once — that is exactly the conversation pharmacists are there for.

• Current list, printed and dated, as written by the prescriber
• Changes log: date, what changed, who changed it, how you were told
• Name of the person who told you, written at the time
• Whether it was confirmed in writing or sent to the pharmacy
• Old lists kept behind the current one, never overwritten
• Both pages taken to appointments and admissions
• A pharmacist review booked after any run of changes

If there is a device, record the card

If your parent has an implanted cardiac device, there is a card, and there is a set of facts that every form and every unfamiliar clinician will ask for. Copy them onto a binder page and photograph the card, front and back.

Record the device make and model, the serial number, the implant date, the hospital that implanted it, and the device clinic's phone number. Note whether there is a remote monitor unit at home — the box that sits near the bed — its make, and whether it is plugged in and connected. If it uses a phone line or a mobile signal, note which, and who to call when its light changes.

Ask the device clinic two administrative questions: how often are remote checks expected, and how will we know if one has been missed. Write the answers with the date.

Keep the physical card in your parent's wallet, not in the binder. The binder holds the copy.

• Make, model and serial number of the device
• Implant date and implanting hospital
• Device clinic phone number and clinic hours
• Remote monitor: make, location in the house, connection type
• Who to call if the monitor light changes
• Expected schedule of remote checks
• Card in the wallet, copy in the binder, photo on your phone

Hospital stays: the bag and the record of what was said

Admissions are common enough to prepare for. Keep a packed bag with an envelope of paperwork in it, and a notepad, because you will be told things by several people over several days and you will not remember who said what.

On the ward, keep a simple daily log: date, time, who spoke to you, their role, and what they said in their words. Ask names. It is not rude to ask somebody to repeat their name, and the log is worthless without them.

At discharge, ask for the summary and the medication list printed before you leave, then compare the new list against the old one at the kitchen table and take both to the pharmacist. Write down who to call in the first week and put that number on the fridge page the moment you get home.

• Envelope: current medication list, changes log, device card copy, insurance card, contacts
• Notepad and pen — the ward log lives in the bag
• Ward log: date, time, name, role, what was said
• Glasses, hearing aids, phone charger with a long cable
• At discharge: printed summary and printed medication list
• Both medication lists taken to the pharmacist
• Who to call in the first week, written on the fridge page

Questions