COPD at home: the equipment records and the contacts page

The equipment page, kept where the equipment is

Respiratory equipment comes with model numbers, suppliers, delivery cycles and service arrangements, and none of it is written down anywhere in the house. Make one page and tape a copy inside a kitchen cupboard door as well as filing it in the binder.

Record every item: what it is, make, model, serial number, which supplier provided it, the delivery or service schedule, and the phone number to call when it stops working — including the out-of-hours number, which is often different and never volunteered.

Add the practical facts you will otherwise hunt for at ten at night: where the spare tubing and filters are kept, when filters were last changed, how many portable tanks are in the house right now, and where the delivery driver leaves things.

Photograph each unit with its label visible. When you ring the supplier, they will ask for the serial number first.

• Item, make, model, serial number
• Supplier name, account number, daytime and out-of-hours numbers
• Delivery or service schedule, and the next due date
• Where consumables are kept, and the reorder point
• Date filters or tubing were last changed
• How many portable units are in the house, and where
• A photo of every label, filed with the record

Ring the utility company, and write down the reference number

Electric utilities in the US run programs for households that depend on electrically powered medical equipment — usually some combination of advance notice of planned outages, priority reconnection, and a note on the account. They do not apply themselves, and they generally need a form signed by a clinician.

Call the utility, ask what their program is called and what they require, and write down the answer, the date, the name of the person you spoke to and the reference number. Then ask the clinic to sign the form and note the date you sent it. Ring back a fortnight later to confirm it is on the account.

Do the same for the water company if it applies, and check whether your county has an emergency register through the Area Agency on Aging or the local emergency management office.

Put a renewal date in the calendar. Most of these registrations expire annually and nobody reminds you.

• Utility program name, requirements, and the reference number
• Name and date of the person you spoke to
• Which clinician signs the form, and the date it was sent
• Confirmation call date, two weeks later
• County emergency register, if one exists
• Renewal date in the calendar, one year out
• A written note of what a power cut actually means for each item of equipment — ask the supplier

The sheet from the clinic: file it, copy it, never write your own

Your parent's doctor or respiratory nurse may give you a written sheet setting out what to do in particular situations. That sheet is a clinical document. File the original, photograph it, and give a copy to every single person who is ever alone in the house with your parent.

Do not summarise it, do not retype it into your own words, and do not compose one yourself if you have not been given one. If you have not been given one, ask at the next appointment whether there should be one, and write down the answer.

On the front of the binder, write the plain administrative facts that go with it: who to call, in which order, day and night, and where the sheet is kept. Those are the parts that get forgotten in a hurry.

Re-photograph the sheet whenever it is updated, and put the date on it. An old sheet in circulation is worse than none.

• Original filed in a sleeve, photographed, dated
• One copy for every person who is ever alone with your parent
• The after-hours number written on the fridge page
• Where the sheet is kept, stated on the front of the binder
• Ask at each appointment whether it has changed
• Old versions removed from circulation and archived behind the current one

A go-bag that is packed before it is needed

Hospital stays with COPD tend to begin at inconvenient hours. Pack the bag now, keep it by the front door or in the hall cupboard, and put a checklist inside the lid so it can be topped up rather than rebuilt.

The paperwork matters more than the clothes. An envelope with the current medication list, the insurance card copy, the contacts page and the emergency sheet does more work in an admissions bay than anything else you can carry.

Include a note of the equipment at home, with the supplier's number, because the hospital will ask what your parent uses and you will not remember the model number at three in the morning.

Check the bag on the first of the month. Replace anything out of date, especially the medication list.

• Envelope: current medication list, insurance card copy, contacts page, emergency sheet
• The equipment page, with supplier numbers
• Glasses, hearing aids, dentures, phone charger with a long cable
• A written note of who to call and in what order
• Slippers, socks, a cardigan, a change of clothes
• A pen and a notepad for the ward log — you will be told things you must write down
• Monthly check date written inside the bag

Appointments, refills and what to ask

Keep the appointment stream and the prescription stream on the same calendar. Both fail in the same way — quietly, at weekends — and both are fixed by counting backwards and setting a date.

Ask the pharmacy whether refills can be synchronised to one date, how much notice each item needs, and whether they deliver. Ask the equipment supplier the same about consumables. These are routine services and they turn six small tasks into one.

At appointments, take a written list of questions and write the answers on the same page. Keep them administrative: what to record, who to call, what paperwork is needed, when to come back. The clinical questions are for the clinician and they will be answered better if you have brought a clear record.

• Which professional is my first point of contact between visits, and what is the direct number?
• What do you want me to write down before the next appointment?
• Can I have the current medication list printed today?
• Is there a written sheet for what to do in specific situations, and is this one still current?
• Can appointments and any tests be booked on the same day?
• Which form needs a signature for the utility program, and who signs it?
• Who do I call about the equipment, and who do I call about the prescriptions?

Questions