Medication timing is critical for people with Parkinson’s and figures released today (October 8) highlight the unsafe reality of going to hospital for people living with the condition.
A new report, ‘Get it on Time’ from the charity Parkinson’s UK has found that nearly two thirds of people with Parkinson’s didn’t consistently get their medication on time in hospital, with more than three quarters of people reporting that their health deteriorated as a direct result of this with people experiencing severe tremors, anxiety and even being unable to walk or talk.
Parkinson’s UK believes that a lack of understanding about the condition is one of the main causes of medication mismanagement in hospitals. The report shows that shockingly less than half of hospitals across the UK provide front-line staff training on Parkinson’s.
The NHS is also losing up to £10 million a year primarily from poor medication management because Parkinson’s patients face 28,860 excess bed days when they’re unnecessarily required to stay. Parkinson’s UK argue that the majority of this money could be saved through mandatory staff training and the introduction and enforcement of self administration of medication policies for Parkinson’s patients who are able to take their own medicines.
The charity also found there are systematic challenges making it impossible for most health trusts and boards to have any insight into the severity of medication mismanagement. This is because 58% of hospitals do not specifically record conditions such as Parkinson’s on patient safety incidents.
Parkinson’s UK has published the findings as part of its ongoing campaign, ‘Get It On Time’, calling on all UK hospitals to ensure every person with Parkinson’s receives their medication on time, every time.
Carole Buckingham, 61, from Cheshire was admitted to hospital earlier this year for an issue unrelated to her Parkinson’s. She experienced huge problems receiving her medication on time, or at all, which left her unable to walk properly. Six months on she still hasn’t fully recovered.
Carole said: “I have to take 36 tablets a day at five different times but whilst I was in hospital I was never given my medication at the time I needed it, even though I was always asking staff and explaining to them how urgent it was. It was like banging my head against a brick wall, I felt ignored and like the staff didn’t understand Parkinson’s and the severity of the situation.
“Because of this my Parkinson’s symptoms got so much worse. One time I was given the wrong drugs but felt I had no choice but to take them because it was the only thing on offer to me. I ended up passing out. I could still hear everything going on around me and alarms going off and the staff rushing around trying to help me, but I couldn’t move or talk. It was terrifying.
“If I’d been given my correct medication on time this never would have happened, and I wouldn’t have been in hospital for as long as I was. The thought of ever having to go back is really frightening.”
Lloyd Tingley, Senior Policy and Campaign Adviser at Parkinson’s UK, said: “Our new report highlights the devastating consequences of when people with Parkinson’s don’t get their medication on time in hospital, resulting in people leaving in a worse state than when they went in.
“It’s clear that hospitals aren’t always the safest place for people with Parkinson’s, with many sharing with us that they’re terrified of ever having to be admitted. This can’t go on and we want to work with healthcare professionals so they are informed, confident and do not feel in the dark about Parkinson’s.
“There’s a simple solution to this problem – give people with Parkinson’s their medication on time. Making training about Parkinson’s mandatory for all hospital staff, so they are aware of the dangers and importance of medication management, is absolutely essential to help achieve this.
Patsy Cotton, Parkinson’s Nurse and UK Parkinson’s Excellence Network report lead, said: “As a Parkinson’s nurse specialist with 20 years experience, I am determined to make sure that people with Parkinson’s get their medication on time because I know it is simply not happening, with devastating consequences.
“Parkinson’s patients inform me they are not listened to by hospital staff and not given time to speak. This clearly tells me that hospital staff are not aware of condition specific needs. But this communication is vital, particularly during a period of illness when Parkinson’s symptoms could get worse.
“We need to ensure all health care professionals who engage with Parkinson’s patients have the necessary knowledge and skills to meet the needs of this complex condition. This will create and, with mandatory training, maintain a better standard of care for Parkinson’s patients across the UK.”
Parkinson’s is a degenerative neurological condition for which there is currently no cure, affecting an estimated 145,000 people across the UK.
The charity has launched a public petition to encourage the NHS to take action and make training, such as the UK Parkinson’s Excellence Network’s online presentation for ward staff, compulsory to save money, free up bed space and ensure hospitals are safe for Parkinson’s patients.
Health professionals are encouraged to take up UK Parkinson’s Excellence Network free online training themselves, share the Get It On Time report with management staff and sign the petition to encourage their trust, and others, to implement mandatory training and self administration policies.
Visit parkinsons.org.uk/ontime-petition to sign Parkinson’s UK’s petition.
All images ©Amit Lennon.