Telling MPs why ‘Every Minute Counts’ for Parkinson’s medication

English MPs from across the political spectrum came to the briefing where they met with people living with Parkinson’s, their care partners and Parkinson’s UK staff to learn more about the Every Minute Counts report. Read the full Every Minute Counts report.

What is the issue?

The report highlights the dramatic impact of people with Parkinson's not receiving their medication on time and what the NHS can do to stop this happening. 

The timing of medication is important for people with Parkinson’s. A delay as little as 30 minutes can cause some people to lose their ability to talk, walk and swallow. 

We believe that doses are often delayed or missed due to hospitals not having self-administration of medication policies, a lack of training for frontline staff on time-critical medication and not using e-prescribing systems adequately. 

This issue is a big problem across the UK. Data collected from Freedom of Information requests we sent to Hospital Trusts in England found that:

• 1 in 4 NHS trusts does not have policies that allow people with Parkinson’s to take their own medication in hospitals.
• Only 52% of NHS trusts require staff responsible for prescribing and administering medication to have training on time-critical medication.
• Despite 81% of NHS trusts having e-prescribing systems, only 58% of them are using them to report on whether people with Parkinson’s receive their medication on time.

Many people with Parkinson’s are not receiving the level of care they need and it's having a serious impact on their health and wellbeing. 

We asked MPs to support us by asking the UK Government to make sure Parkinson’s medication is given on time in hospital settings in England, ask questions in Parliament to highlight our report and demand action and visit their local group.

Amplifying the voices of the Parkinson’s community 

Volunteers Jonny, Ben, Clare and Vicki joined us to share their experiences with MPs of late or missed doses of their Parkinson’s medication while in hospital. This really helped to demonstrate to MPs why they need to support this vital campaign. 

Clare, a registered nurse who lives with Parkinson’s said: 

“The experience of meeting with MPs about time-critical medicine has made me realise the value of a whole system approach to driving sustainable change and care improvement. I was encouraged by the genuine interest in this work by those we met and encouraged by their willingness to support this campaign in their own constituencies.”

Jonny, an emergency medicine consultant living with Parkinson’s added: 

“Many of the MPs who came had a personal connection to Parkinson’s, with a relative or friend having been previously diagnosed. 

We were greatly encouraged by the attendance of a health minister and a former Health Secretary, as policy change needs to be driven from these corridors in the first instance. 

"We loved talking to everyone, educating them about the importance of getting Parkinson’s medication on time, every time and we hope they went away with more insight and a desire to act."