Damning insights from Parkinson’s UK’s recent report, ‘Every minute counts’, reveal the true extent of missed medications for people living with Parkinson’s.
The report is part of the charity’s Get It On Time campaign. It found that only 42% of people with Parkinson’s received their medication on time when they were admitted to hospital in England last year. This is despite there being practical solutions for the NHS in England to solve this crisis.
Missed or even slightly delayed doses can lead to severe and irreversible harm to people living with Parkinson’s. Data from Freedom of Information requests sent to NHS Hospital Trusts in England by Parkinson’s UK found:
- Just half (52%) of NHS Trusts provide training on time critical medication to staff.
- One in four NHS Trusts in England does not have policies allowing people with Parkinson’s to manage their own medication in hospitals.
- NHS Trusts are not required to monitor or report missed or delayed doses of medication and, therefore, are unaware of the need to take action.
Norman Hans, 71, has been living with Parkinson’s for over 20 years and has to take 16 tablets a day at two-and-a-half-hour intervals to manage his condition.
“Taking my own medication while in hospital made such a difference to me, and it made life easier for the nurses. I could keep my Parkinson’s under control myself without worrying that my medication would be late. I couldn’t praise that hospital enough for having this policy in place.
“The next time I went into the hospital, I had hoped that it’d be the same situation, but every time since then, it has been a total disaster, and I’ve just been ignored when bringing the issue up.”
The charity also highlights the cost to the health and care system: missed doses lead to increased length of stay in hospital and add to the demand for social care and rehabilitation services when leaving hospital. Evidence shows that missed doses of Parkinson’s medication can increase the length of stay in hospital by an average of 4 days1. The average length of stay for an emergency admission of a person with Parkinson’s in 2022/2023 was 12.4 days2.
Patsy Cotton, a retired Advanced Nurse Practitioner in Parkinson’s, explains:
“When people with Parkinson’s are admitted to hospital, it is often for an issue that is unrelated to their condition, which means they are seen by health professionals who are not Parkinson’s specialists. This can lead to people not getting their medication on time and staying in hospital longer as a result. If we don’t get this right, we risk causing more harm than good.”
This is not just an issue for people with Parkinson’s; there are other conditions that require medication to be taken at specific times. That’s why Diabetes UK, Epilepsy Action, National AIDS Trust, Royal College of Emergency Medicine, The Richmond Group, Royal Pharmaceutical Society, and Rethink Mental Illness joined Parkinson’s UK, issuing a joint statement calling on the Government to take action on time critical medication in hospitals.
Health professionals with Parkinson’s leading the way locally
On World Parkinson’s Day in April 2022, a campaign launched by a group of health professionals who live with Parkinson’s has raised the profile of time critical medication across the UK. Over 100 chief executives of acute healthcare trusts, regional ambulance services, chief nursing officers and other NHS executives across all four nations have pledged their support.
The group, in collaboration with the Parkinson’s Excellence Network (a network of health and social care professionals interested in driving up the quality of Parkinson’s services), have developed ‘Time critical medication, on time, every time. Ten recommendations for your hospital’. They ask those who’ve pledged their support to benchmark progress against each recommendation. Parkinson’s UK can provide advice and support to help implement these changes.
Parkinson’s UK’s ‘Every Minute Counts’ report recommends each Integrated Care Board lead on patient safety should ensure all NHS Trusts in their area implement the ten recommendations.
1 Martinez-Ramirez, D., Giugni, J. C., Little, C. S., Chapman, J. P., Ahmed, B., Monari, E., Shukla, A. W., Hess, C. W., & Okun, M. S. (2015). Missing Dosages and Neuroleptic Usage May Prolong Length of Stay in Hospitalized Parkinson’s Disease Patients. PLoS ONE, 10(4). https://doi.org/10.1371/journal. pone.0124356
2 Wilmington Healthcare Excellence Network Data dashboards https://parkinsonsuk.hsj.co.uk/ Secondary care data from HES database published by NHS Digital.
Content provided by Parkinson’s UK. For further information, please contact jalmond@parkinsons.org.uk or call 020 7963 3760. Further resources are available at www.parkinsons.org.uk/time-critical-medication-resources. For joint statement click here. For the ‘Every Minute Counts’ report click here.
