Parkinson’s is the fastest growing neurological condition in the world. It affects young or old, and in the UK, around 145,000 people are living with the condition. With population growth and ageing, this figure is estimated to increase by 20%, within the next ten years.
Currently there is no cure for Parkinson’s, but medication plays a vital role in managing symptoms and preventing deterioration.
In this blog, Laura Cockram, Head of Policy and Campaigning at Parkinson's UK talks about:
- The serious health implications of delayed medication
- Evidence of a widespread safety issue
- The challenges and barriers
- Potential solutions
- How Parkinson’s UK are campaigning for change.
The impact of delayed medication
“ I had to go into hospital after my knee gave way and I fell at home. Often you go into hospital with something unrelated to your Parkinson’s but then your Parkinson’s gets worse due to it not being managed properly.
“While in the hospital I missed repeated doses of my medication due to a lack of knowledge and understanding of my condition-specific needs. This threw me out of sync completely – it brought on more severe depression, unsteadiness on my feet, more severe tremors. It affected me in so many ways. It’s impossible for me to control these symptoms, particularly my tremor, without my medication.” Carole (person living with Parkinson’s)
The three main symptoms of Parkinson's are tremor, stiffness and slowness of movement but there are many more, including problems with sleep and memory and mental health issues. Each person can experience them differently.
If people with Parkinson’s don’t get their medication on time it can seriously impact their health. They may not be able to move, get out of bed, swallow, walk or talk. Some people may never recover and may permanently lose their ability to walk, talk or worse.
Even a delay in taking medication of 30 minutes can lead to serious health implications for someone living with Parkinson’s.
Not only does this have hugely adverse effects on people’s health – keeping them in hospital longer – it also costs the NHS extra money. This is because a person who could already have been discharged needs to be looked after longer.
2019 NHS data showed that people with Parkinson’s face 28,860 excess bed days in hospital every year in England alone – this costs the NHS £10m a year. While not all of these excess bed days are from poor medication management, we know missed medication makes a large contribution to staying in hospital longer.
Evidence of a widespread safety issue
In 2019 we gathered evidence from across the UK around medication management for Parkinson’s in in-patient settings using a freedom of information request. It was sent to all hospital trusts in England, health boards in Wales and Scotland, and health and social care trusts across Northern Ireland. We also surveyed over 700 people affected by Parkinson’s to hear their views and experiences, we also used data from a survey we conducted on access to health and care services.
Our findings confirmed that too many people with Parkinson’s were not receiving their medication on time, every time:
- 63% of people living with Parkinson’s did not always receive their medication on time when staying in hospital.
- 657 patient safety incidents relating to missed Parkinson’s medication were reported from just 47 hospitals in the financial year 2018/19.
- One hospital reported 97 patient safety incidents relating to Parkinson’s medication within this timeframe.
- 58% of hospitals do not record patient safety incidents for people with Parkinson’s and therefore have no insight into the severity of issues within the trust or health board.
- Only 44% of trusts and health boards offer ward staff mandatory training on Parkinson’s.
- 57% of trusts and health boards do not have a system that alerts Parkinson’s or movement disorder specialist professionals when a person with Parkinson’s is admitted to one of their wards.
- Many trusts and health boards have out-of-date self-administration policies that mean people with Parkinson’s able to take their own medication are unable to do so, with a further 26% of trusts having no policy at all.
- 31% of trusts and health boards are either unaware of – or not using – Parkinson’s UK learning and ward resources to support successful medication management.
Understanding the challenges and barriers to safer care
The average person living with Parkinson’s may find themselves on multiple doses of medication a day to manage their symptoms. The prescribed timing of these medications changes from person to person and often doesn’t correspond with typical medication rounds on hospital wards. This is because everyone’s Parkinson’s symptoms are different and therefore need different medication management regimes.
When people are admitted to hospital for ill-health unrelated to their Parkinson’s, they are likely to be treated on a general medical ward rather than a specialist neurological ward. The risk of missing vital medication increases in these circumstances, as staff on these wards do not have an in-depth knowledge of Parkinson’s and related medication issues, including but not limited to, timely delivery of medication.
Finding solutions to reduce harm
Using digital tools
Electronic Prescribing and Medicines Administration (EPMA) has huge potential to reduce medication errors in hospitals. The NHS goal of going paperless by 2024 means that every NHS trust could soon have the software needed to help tackle this problem.
In a prizewinning project, NHS Ayrshire and Arran Parkinson’s nurses worked with the epharmacy team to link individual’s prescribing data to a ward’s electronic whiteboard, placed in the nurses’ station. This showed a symbol that turned green to indicate when Parkinson’s medication was due, and red when it became late.
This visual prompt significantly improved medication administration times. Before the intervention, only 10% - 41% of Parkinson’s medications were delivered on time on the ward. This rose to 65% - 83% in the six weeks following the intervention. The project potentially has applicability to a range of other conditions with time sensitive medication, including diabetes. The opportunity to build the needs of people with Parkinson’s in hospital into the rollout of EPMA could be transformational.
Identifying patients with Parkinson’s on admission
An alert system that flags when a person with Parkinson’s is admitted to their specialist team would help to ensure that the individual gets the right medication and support and that ward staff fully understand how to care for their patient.
Identifying trusts that need support
We also believe that every hospital trust and health board must record patient safety incidents by condition to improve reporting on missed medication for people with Parkinson’s. This will provide data for trusts and health boards that need the most support to improve.
Recording missed doses as Never Events
We believe that the Care Quality Commission in England should make a missed dose of Parkinson’s medication a Never Event. A Never Event is an incident with the potential to cause serious harm to a patient but which is wholly preventable. Making a missed Parkinson’s dose a Never Event would boost awareness and reporting.
Parkinson’s UK: Get It On Time Campaign
We launched our refocused Get It On Time campaign in October 2019 and had great support from a handful of hospitals across the country who our supporters got in touch with. They agreed to implement the mandatory staff training and self-administration of medication policies.
When the pandemic hit we scaled back our campaigning so the NHS could focus on COVID-19. We are currently preparing our supporters to get back out to trusts and health boards to urge them to implement our campaign asks.
In 2021 we’ll be gathering evidence on how medication is managed for people with Parkinson’s who live in care homes and then launching campaigning activities to improve the situation in these settings.
If you’d like to support Parkinson’s UK campaigns you can sign up to receive regular updates and take action by joining our Campaigns Network or if you have a few spare hours a month you could even become a campaign volunteer.
Working together we can make things better for people affected by Parkinson's.
Further blogs in the Parkinson's series
- Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff - a blog by Dr Rowan Wathes, Associate Director of the UK Parkinson's Excellence Network at Parkinson's UK
- Preparing to go into hospital – tips for people with Parkinson's and their carers - a blog from Laura Cockram, Head of Policy and Campaigning at Parkinson's UK
Share your insights with Patient Safety Learning
Have you experienced medication delays or unsafe care while you were a patient in hospital? How did it affect you and your health?
Perhaps you are a healthcare worker who has insight to share? What are the challenges staff face in delivering medication on time? What do you feel are the biggest barriers to providing consistently safe care? Have you implemented changes that have improved outcomes?
You can share your insights in the comments below, or email us at firstname.lastname@example.org
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