Stroke recovery: the records to keep from hospital to home

Write down who is who, on day one

After a stroke there are more professionals involved than at any other point, and they change shift, floor and building. The single most useful page in your binder is a contact list you started on the first day.

Every time somebody introduces themselves, write the name, the role and how to reach that role again. Roles matter more than names, because names change and roles do not. Ask each person which of them is the one who coordinates — in a US hospital that is usually a case manager or discharge planner, and they are the person who will drive everything that happens next.

Ask the ward clerk for the ward's direct number, not the switchboard. Ask what times the doctors do rounds, and whether you can be present. Write the answer down and plan your week around it.

• Case manager or discharge planner — name, direct number, working hours
• Ward direct line, and the ward name and floor
• Attending doctor, and the name of the service
• Physical therapist, occupational therapist, speech-language pathologist
• Social worker attached to the unit
• Rounds time, and whether family may attend
• Who to call at night, and who to call at the weekend

The authorisation question nobody volunteers

How long your parent stays in rehab is partly a paperwork matter, and it is decided by people you can talk to. Ask the case manager, early and in writing, how many days the insurance plan has approved, when that is reviewed, and what happens at the review.

Write the answer with the date and the name of the person who gave it. Ask to be told when a new approval is granted or refused, and ask what the appeal process is if it is refused. These are administrative facts about a plan, and the case manager and the plan's own member services line are the people who hold them.

Keep every letter the insurer sends, in date order, in one sleeve. Do not throw away anything that looks like a routine notice. If a decision is ever disputed, that sleeve is the case.

Ask the same question again a week later. Approvals change and nobody rings to tell you.

• Days approved so far, and the date of the next review
• The name of the person who told you, and when
• What triggers a further approval, in the plan's own words
• How you will be notified, and by whom
• The plan's member services number, and your parent's member ID
• Every letter from the insurer, in date order, kept whole

Therapy appointments: one calendar, not four

Physical therapy, occupational therapy and speech-language therapy are often three separate schedules, sometimes at three locations, sometimes with three phone numbers. Put them on one calendar in the binder and keep a photograph of it on your phone.

For each appointment record the date, time, discipline, location, who is taking your parent and how. Transport is the part that fails: after a stroke a car journey may need two people, and a taxi may not be workable. Ask the therapy office how far the walk is from the parking area, whether there is a drop-off point, and how much time to allow — practical facts that the receptionist knows and nobody else will tell you.

After each session, write one line: date, discipline, what you were asked to do at home, who said it. Not what it means — what you were asked to do, in their words.

• One calendar, three disciplines, colour or initial per discipline
• Location, room, parking and drop-off notes for each
• Who drives, and whether a second person is needed
• Cancellation number and the notice they require
• A one-line record after each session, in the therapist's words
• The date the current block of sessions ends

Equipment: what came home, from whom, and when it goes back

Equipment arrives from several sources — the hospital, a medical equipment supplier, a loan closet, or bought by you at a pharmacy. Some of it is rented, some is billed monthly, and some has to be returned. Nobody keeps track of this centrally, so you do.

One row per item: what it is, make and model, who supplied it, the date it arrived, whether it is rented, bought or loaned, the phone number for repairs, and the return date if there is one. Photograph each item with its label visible and keep the photos with the record.

When something breaks, you will need the supplier and the model number within about a minute. When something is rented and forgotten, it is billed for a year.

• Item, make, model, serial number where there is one
• Supplier name and phone, and whether they deliver or you collect
• Rented, purchased, or on loan — and who is billed
• Delivery date, and return date if applicable
• Repair and out-of-hours number
• A photo of the label, filed with the record
• Who at home has been shown how it works

The discharge conversation, and what to ask before the date is set

Discharge is a paperwork event with a date attached, and the date can move fast. Ask early — not on the day — what has to be in place before your parent can come home, so you can start arranging it.

Take a written list of questions into the discharge meeting and write the answers on the same sheet. Ask for the discharge summary and the medication list on paper before you leave. Ask who to call in the first week, and write that number on the fridge page as soon as you get home.

The medication list at discharge often differs from the list before admission. Book a review with your parent's regular pharmacist and take both lists in. The pharmacist is the professional whose job this is, and it is a free conversation in most pharmacies.

Write down the follow-up appointment dates before you leave the building, including who books them.

• What must be in place at home before discharge — get it as a list
• Who arranges home therapy, and when will they first call?
• May I have the discharge summary and the medication list printed today?
• Who do I call in the first week, day and night?
• Which appointments are already booked, and which must I book?
• What equipment is coming, from which supplier, and on what date?
• Who at home needs to be shown something, and who will show them?

Questions