‘Off’ is a word with a particular meaning for people with Parkinson’s who take medication to control their symptoms. ‘Off’ happens in-between scheduled medication dosages. It is not just an unwelcome return of motor symptoms; it can also be painful and frightening, as described here by a person with experience.
That being ‘off’ is a feature of Parkinson’s tells us something important: Parkinson’s medication is time critical. While ‘Off’ periods can happen unexpectedly, they happen most often when medications are missed or delayed. Just as insulin is time critical for people with diabetes, dopamine replacement is time critical for Parkinson’s. When someone with Parkinson’s doesn’t get their medication on time, the consequences can be severe, even life changing.
There are some situations that put people with Parkinson’s at risk of losing access to their medication. If you don’t have Parkinson’s, you might be surprised to learn that one of these situations is simply: being in hospital.
Patsy Cotton, a Parkinson’s nurse specialist and Chair of Parkinson’s UK’s Time-critical Parkinson’s Medication (‘Get It On Time’) Steering Group, tells us more:
“We know from the 2019 UK Parkinson’s Audit that just 53% of people with Parkinson’s say they get their medication on time, every time when they’re in hospital. This is despite the well-established ‘Get It On Time’ campaign and a handful of areas where we see excellent practice. In other words, we’re still some way from ‘cracking’ this problem”
Patsy told us more about the work of the Time-critical Parkinson’s Medication group:
The most visible aspect of our work is the extraordinary campaigning efforts of Dr Jonny Acheson, Clare Addison and fellow NHS professionals who live with Parkinson’s. This group has approached Chief Executives at every NHS organisation to ask them to sign the Time-critical Parkinson’s Medication (‘Get It On Time’) pledge. At the time of writing:
- 69 (out of 144) NHS organisations in England have signed up
- 5 (out of 14) have signed up in Scotland
- 4 (out of 7) have signed up in Wales
- 5 (out of 5) have signed up in Northern Ireland.
There is real momentum behind this work and the group’s efforts have meant we’ve managed to hold a number of meetings with high-profile figures across the UK – including the Chief Nursing Officers in all four UK nations and Henrietta Hughes, the Patient Safety Commissioner for England.
Alongside this work, sub-groups are developing three new toolkits:
- A toolkit aimed specifically at NHS staff.
- A toolkit aimed specifically at hospital pharmacists.
- An ‘advocacy toolkit’ for people with Parkinson’s.
We think these new toolkits can make a real contribution to improving on that 2019 Audit figure. All three toolkits are in draft and our intention is to publish them in mid-2023.”
What else can be done?
We recognise there is a long way to go before all people receive all of their medication on time while in hospital. At Manchester Metropolitan University therefore, we are carrying out research that aims to reduce the impact of missed medication for the people who report not always getting their medication on time.
We have been working with people with Parkinson’s in our local community and Parkinson’s UK’s Time-critical Parkinson’s Medication campaign. Together, we have designed a new study that aims to measure the long-term impact of missed medication dosages while in hospital. This is important because the impact of missed/delayed medication does not just go away once medication is reinstated: delayed or missed medication can lead to longer hospital stays, slower recovery times, and adverse health outcomes, including falls.
Importantly, because we know very little about the long-term impact of delayed or missed medication while in hospital, there are currently no policies or interventions that are designed to reduce this impact. Our study will measure many aspects of health over a 6-month period in people with Parkinson’s who have been in hospital, whether they have taken 100% of their medication on time, or whether they experienced delays or omissions to some (or even all) doses.
Our study lead, Dr Chesney Craig said:
“We will work together with the Time-critical Parkinson’s Medication campaign group to use the data from this study to inform future policy on managing the impact of missed/delayed medication while in hospital, with potentially transformative implications for Parkinson’s healthcare both nationally and internationally.”
We hope, in time, the biggest concern about going into hospital for a person with Parkinson’s is the worry about which PJs to pack.
If you are living with Parkinson’s and are expecting to go into hospital within the next year, are currently in hospital or have been discharged from hospital in the past 4 weeks, please find further information about how you can take part here.
If you have any questions, please contact Dr Chesney Craig via email (firstname.lastname@example.org) or telephone (0161 247 5538).