Parkinson's medication, and why the clock matters

Levodopa, the medicine most people with Parkinson's take at some point, is absorbed by nerve cells in the brain and turned into dopamine, the chemical used to pass messages to the nerves that control movement (NHS, Parkinson's disease treatment). Each dose covers a few hours and then runs down, which is why the next is due before the last has worn off.

The NHS Specialist Pharmacy Service, which advises NHS staff on medicines, defines a time critical medicine as one where a dose given more than 30 minutes before or after the scheduled time may cause harm or substantially poorer treatment, and lists Parkinson's therapy as an example (defining time critical medicines). Parkinson's UK says delayed or missed doses can leave somebody immobile, shaking badly and distressed.

National guidance treats this as a safety matter. NICE says antiparkinsonian medicines "should not be withdrawn abruptly or allowed to fail suddenly due to poor absorption", because of the risk of acute akinesia, a sudden loss of movement, or a rare and serious reaction called neuroleptic malignant syndrome (NICE NG71, recommendation 1.3.2). Paracetamol taken an hour late still does its job. A Parkinson's dose taken an hour late leaves an hour in which washing, dressing, walking and swallowing are all harder, which is an off period, and the stretch in which freezing and a fall become more likely.

Four doses a day is common, and some people are on more. Drawn out, the day has very little slack in it. The Parkinson's care guide sets out what else changes as the condition progresses.

NICE guidance on medicines for people getting social care at home says that for time sensitive medicines the prescriber should give written directions covering what the medicine is for, what dose should be taken, and what time it should be taken, as agreed with the person (NICE NG67, recommendation 1.7.3). Ask the Parkinson's nurse or the GP practice for that in writing, along with what to do about a missed dose.

Food is part of the timetable for some of these medicines rather than a separate question. NHS guidance for co-beneldopa, one of the levodopa tablets, says to avoid taking it alongside meals containing a lot of protein, such as meat, eggs, cheese, beans or lentils, and to take it at least 30 minutes before a meal or 60 minutes after (NHS, how and when to take co-beneldopa). Parkinson's UK says protein interferes with how much levodopa some people absorb, and that anyone wanting to change when they eat protein should talk to their GP, specialist, Parkinson's nurse or a dietitian first (Parkinson's medication and your diet). Not every medicine works this way, so the rule for your relative is the one on their own list.

A dosette box is not automatic, and not a decision for the family alone. The pharmacy assesses whether one is appropriate, and some medicines lose stability out of their packaging. What is a dosette box covers where they fall short, and who qualifies for a dosette box covers how the NHS decides. Where a box does not suit, a written chart beside the original packs does the same job.

The Care Quality Commission's guidance for home care providers describes medicines support as prompting or reminding, helping remove medicines from packaging, and administering some or all of a person's medicines. That standard is for registered agencies, and PrimeCarers is not one. We are an introductory service: we introduce families to self-employed carers, we do not provide, direct or supervise care, and we hold no CQC registration. The CQC says introductory agencies do not need to register because they have no ongoing role in the personal care a carer gives after the introduction.

So the carer decides what they are competent and willing to do about medicines, and you agree it with them in writing before care starts. The contract between your family and the carer says the carer provides the services independently agreed between you, including the medication schedule and the condition information you give them. It also says a carer should not take on work they feel unqualified to perform and should tell you, so other arrangements can be made, and that you should not press a carer into anything they do not feel able to do safely.

Injections and apomorphine pumps sit outside all of this. They belong to the district nursing team, arranged through the GP practice, and delegated healthcare tasks explains how a task is handed over properly.

1. 1

   Agree who rings whom before the first visit

   Before care starts

   Decide who the carer rings when they are delayed, who covers the dose meanwhile, and who rings the GP practice. Put it in the same email as the timetable.
2. 2

   If the carer is delayed, the dose does not wait for them

   On the day

   The contract says the carer should make reasonable efforts to tell you about material delays. Agree the fallback: your relative taking the dose from the box, a neighbour with a key, or you on the phone at the right minute.
3. 3

   Never make up a missed dose by doubling the next one

   Same day

   NHS guidance for co-beneldopa is to leave out the missed dose and take the next at the usual time, never two at once. The advice differs between medicines, so ring the pharmacy rather than deciding at the kitchen table.
4. 4

   Ring the GP practice the same day if the tablets cannot be taken at all

   Same day

   If your relative has been sick, cannot swallow, or has run out of tablets, say on the phone that they have Parkinson's and have missed doses. NICE warns against these medicines failing suddenly. Ring 111 out of hours.

Repeated lateness is a different problem from one bad morning, and the contract covers it. Continual lateness is a reason your family can end the arrangement, and notice for hourly care is 48 hours. A visit your family cancels is payable to the carer in full, apart from unplanned hospitalisation, illness, or another reason the carer agrees to. PrimeCarers charges nothing to cancel, and does not set the terms between your family and the carer. Cancellations and late-running visits covers both, and the standard visits and what each covers covers how visits are arranged around a day.

A timetable can outgrow booked visits. When the doses and the help around them are spread across the day, and the gaps between visits are where things go wrong, live-in care for Parkinson's sets out what changes when one carer is there for all of it.

NICE says people with Parkinson's admitted to hospital or a care home should have their medicines "given at the appropriate times, which in some cases may mean allowing self-medication", and adjusted only by a specialist in Parkinson's or after discussion with one (NICE NG71, recommendation 1.3.4).

Parkinson's UK, which runs the Get It On Time campaign and publishes information for families, suggests asking the hospital in advance about its policy on patients taking their own medication, and where medicines will be kept, who holds the key and who writes on the drug chart. It also suggests telling every member of staff who cares for your relative about the timetable, asking whether the hospital has a Parkinson's nurse, and using an alarm or pill timer on the ward, since ward rounds and dose times are not the same thing (managing your medication in hospital). If a dose is late, raise it with the nurse in charge at the time.

Take the written timetable in, and keep a copy on your phone. When your relative comes home the list may have changed, and every change needs to reach the chart, the box and the carer the same day. Hospital discharge explained covers what to ask for before they leave the ward.