An NHS England programme announced this week will help to protect people with Parkinson’s from potential harm associated with poor access to time critical medication, campaigners say.
NHS England has committed to a three year Medicines Safety Improvement Programme focused on time critical medication. The move follows a long campaign from charity Parkinson’s UK over concerns about delays in accessing Parkinson’s medication.
The Medicines Safety Improvement Programme addresses the most important causes of severe harm associated with medicines, including a new ambition to improve care for people by ensuring that they receive their critical medications on time when in hospital.
The importance of time critical medication was highlighted by Parkinson’s UK’s Get It On Time campaign, and its ‘Every minute counts’ report revealed in late 2023 that only 42% of people with Parkinson‘s received their medication on time, every time when admitted to hospital (in 2022).
Missed or even slightly delayed doses of Parkinson’s medications can affect talking, swallowing and walking, and cause stress and anxiety. Missed doses can even be fatal.
The Parkinson’s Excellence Network, a collective of health and social care professionals aimed at sharing best practices and supporting service improvements, has also played a role in this change for the benefit of the Parkinson’s community.
Alongside the charity’s campaigning work, the network has been actively sharing patient stories with hospital staff to highlight the real life implications of delayed medication.
One such story is Barrie’s. Despite repeatedly warning hospital staff about his time critical Parkinson’s medications, his warnings were ignored which led to a significant deterioration in his health, mobility and ability to perform basic functions such as swallowing.
Barrie said: “I kept telling the hospital staff how important it was for me to get my medication on time, but I wasn’t listened to. The delays had a serious impact on my health. I couldn’t walk properly, I struggled to swallow, and the anxiety was overwhelming. Missing doses isn’t just inconvenient – it’s dangerous for people like me living with Parkinson’s. I hope this new NHS programme will make sure others don’t have to go through what I did.”
See more on Barrie here.
The news that NHS England has committed to this new ambition was first shared by national medical director of NHS England, Professor Sir Stephen Powis at Parkinson’s UK’s emergency summit on the topic, which was chaired by former BBC presenter and co-host of the Movers and Shakers podcast, Mark Mardell, who lives with Parkinson’s.
Mark said: “I’m delighted that NHS England appears to have accepted Parkinson’s UK’s long running argument that there is a grave problem which needs to be addressed. I shall be watching closely to see what action is taken, and what progress is made”. Mark added that “with people’s lives at risk, there is no room for complacency.”
Sir Stephen Powis said:“People who need time critical medicines should be able to receive them on time and safely when in hospital – this is particularly important for people with Parkinson’s, and we welcome the report produced by Parkinson’s UK which highlights this.
“We have included time critical medicines as part of the National Patient Safety Strategy and we are very committed to this work and our partnership with the coalition of charities led by Parkinson’s UK.”
Juliet Tizzard, director of External Relations, at Parkinson’s UK, said: “We’re delighted that NHS England has committed to a three year national medicines safety improvement programme that includes a new ambition on time critical medication. It will give NHS services in England vital evidence so that they can make tangible improvements on the ground. We’re looking forward to working with NHS England to make sure people who depend on time critical medication see the hospital as a safe place to be.”
The refreshed programme of activities for the Medicines Safety Improvement Programme for 2024 to 2027 is part of the National Patient Safety Strategy. Working alongside Parkinson’s UK and other charities, the improvement programme will be designed over the next year with people with lived experience and front-line teams, before being made available across all NHS Trusts.
Receiving medication on time is not just an issue for people with Parkinson’s. Diabetes UK, Epilepsy Action, National AIDS Trust, Royal College of Emergency Medicine, The Richmond Group, Royal Pharmaceutical Society, and Rethink Mental Illness, have also been campaigning for change.
Professor Claire Anderson, president at Royal Pharmaceutical Society, said: “We welcome this news. Ensuring patients receive their medication on time is paramount and every delay and every missed dose puts patients at risk of serious harm. We cannot afford to overlook the importance of timely medication.
“We hope the patient safety programme will implement measures to improve patient safety and ensure that time critical medicines are administered promptly. We are committed to working collaboratively with NHS England and other stakeholders to address this pressing issue and improve the quality of care for all patients.”
