Timing is critical for Parkinson's medications: A fresh look at an old challenge

The age old issue in Parkinson’s care has been “timing is important in life but critical in the treatment of Parkinson’s disease." This was secret number #2 in our book Parkinson’s: 10 Secrets to a Happier Life. Our own Jonny Acheson who is a physician in the UK and the artist for the parkinsonsecrets.com website put together this blog. He offers us a fresh look at an old challenge.

Not all medications are the same: they come in different shapes, different sizes, different colors; some are swallowed by mouth and others aren’t. Some are life-saving, some you know the dose of without having to look it up (because perhaps you prescribe them regularly); others you don’t. There is a group of medications that when taken (or administered) they are time critical. These are medications that need to be given precisely when the patient needs them. Parkinson’s medications fall into this group.

To people living with Parkinson’s, the medications are life critical, taking them regularly and at the right time is critical to the quality of their life, delay them or miss doses and they will get symptomatic very quickly; usually within 30 mins of when they should have received them.

There is however a problem. These time-critical medications are not being given to people with Parkinson’s (PWP) anywhere close to 100% of the time in healthcare settings across the world; the problem occurs in acute or community hospitals and also in care and nursing home facilities.

This challenge has been recognized in many national and international campaigns to draw attention to this critical issue. In 2006 Parkinson’s UK launched their ‘Get it on Time’ campaign to tackle this issue, however as they state in their own report, it has had little impact. In 2018-2019 it was reported that patients with Parkinson’s in England spent an extra 28,860 nights in hospital costing the NHS £10 million pounds. NHS England wrote a report back in 2018 titled ‘Sarah’s Story’ about the variation between standard and sub-optimal care pathways of which medications in the hospital was highlighted. The Parkinson’s Foundation has for many years been publishing papers and advancing an Aware in Care campaign and has given away over 100,000 free hospitalization kits. Parkinson’s Foundation data suggests 3/4 PWP’s do not receive their medications on time every time when hospitalized.

That represents just one story; there are many, many more. You may be sitting reading this blog thinking that this exact scenario “happened to me when I was in hospital.” Parkinson’s is now the fastest growing neurological disease in the world. Failing to administer Parkinson’s medication at the right time is creating a “mobility emergency” and many more PREVENTABLE challenges. There is an urgency to this; we have to act and do better.

People with Parkinson’s may feel that this campaign is a “closed shop;” that it is just for those who work in healthcare. It is not. We would encourage people to share it with your local hospital(s) and ask your hospital CEO to pledge their support, “every person with Parkinson’s in their hospital receives their time critical medication on time.”

This campaign will only work if there is commitment from every hospital CEO around the world. That there is a recognition of the potential harm caused to people with Parkinson’s when they do not get their medications when they need them. This change needs to come from the top down, with accountability and action.  Yes, the PWP may have been discharged home after a delay, but where they discharged home to their same baseline; could they function as well as they could before they went into your hospital? Is their quality of life the same, or has there been a new additional burden placed on their care partner?

Calling all hospital CEO’s, it’s time to act.

People in the Parkinson’s community are not just a number, a figure, an expense on your ledger.  They are among the most decent of people living with a long-term condition; they do the best they can to make every day their best day.

We all grow older each day, one day it may me be on a hospital ward, twenty years down the line. My hope then as it is now is that PWP  won’t have to be vocal or be persistent to get their medication when they need them. It will work seamlessly because healthcare works. Realise that Time Matters : It’s Critical!!