Are UK hospitals safe for people with Parkinson’s?

Special reports

Author: Simge Eva DoganPublished: 17 October 2019

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A new report by charity Parkinson’s UK has found that more than two thirds of hospital patients with Parkinson’s do not receive their medication on time – and calls for mandatory training to make hospitals a ‘safer’ place for people living with the condition

People with Parkinson’s are “unsafe” in UK hospitals, according to a new report from charity Parkinson’s UK.

After surveying 700 people living with the condition earlier this year, the charity found that 63% of patients were not receiving their medication on time when staying in hospital. And more than 75% reported that their health had worsened as a result of late medication.

With an estimated 145,000 people living with Parkinson’s in Britain, Parkinson’s UK has launched the ‘Get It On Time’ campaign, demanding the NHS take action and provide mandatory staff training to ensure better care for hospital patients living with Parkinson’s – something that currently, less than half of NHS hospital staff are trained to do.

Rachel Power, chief executive of UK advocacy group The Patients Association, said the lack of specialist hospital staff is a longstanding issue.

“People with Parkinson’s have always encountered difficulties in hospital, with non-specialist staff simply not understanding how important it is for them to get their medication strictly on time,” said Power. “The ongoing crisis conditions in hospitals are almost certainly making this problem substantially worse.”

“I felt ignored and like the staff didn’t understand Parkinson’s”

Discussing the report, Lloyd Tingley, Parkinson’s UK’s senior health policy and campaigns adviser, said: “It’s clear that hospitals aren’t always the safest places for people with Parkinson’s, with many sharing with us that they’re terrified of ever having to be admitted.”

One individual quoted in the report, who was diagnosed with Parkinson’s nine years ago, shared his experience of hospital admissions with Parkinson’s UK:

“I needed my Parkinson’s medication at 12 noon but when I asked for it at that time, I was told the drug round was not until 1pm. No one on the ward was aware that people admitted with Parkinson’s had to get their medication at very specific times. By the time I got my tablets, I couldn’t even communicate.

“I had uncontrollable tremors, I couldn’t do anything for myself, I literally couldn’t function, and I was immobile.”

Another participant with Parkinson’s said she felt ignored by hospital staff when she asked to take her own medication:

“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.”

Parkinson’s Europe’s secretary general, Russell Patten, said: “One of Parkinson’s Europe’s strategic goals is to strive for healthcare systems where people with Parkinson’s receive appropriate treatment and individualised care. This includes, of course, hospitals.”

He added: “We are fully supportive of Parkinson’s UK’s ‘Get It On Time’ campaign, and we hope this will lead to a general improvement of how the needs of people with Parkinson’s are addressed in healthcare settings in the UK and across Europe. Education and training of healthcare professionals about Parkinson’s is essential if the lives of people with Parkinson’s are to be improved.”

A nationwide call to action

Since the launch of the Get It On Time campaign, Parkinson’s community has taken to social media to share their experience of hospitals.

One Twitter user commented on her mother’s struggle to get medication on time in hospital.

Another user said healthcare professionals need more training on Parkinson’s.

Jeremy Vine, UK presenter for BBC Radio 2, expressed his support for the campaign.

Parkinson’s campaigner Jonny Acheson shared an illustration encouraging others to back the initiative.

Commenting on the research findings, a spokesperson for NHS England, said: “Patients with Parkinson’s and other neurological conditions are among the most vulnerable in our society and all parts of the NHS strive to provide them with the best care possible.

“This summer we published guidance, in partnership with charities such as Parkinson’s UK, to help local NHS staff take practical steps to improve the care for these patients in our hospitals.”

To support the Get It On Time campaign and call on the NHS to introduce 15 minute mandatory staff training on Parkinson’s, you can sign Parkinson’s UK’s petition here.

Read more:

New NHS toolkit to offer people with Parkinson’s “highest quality care”

Early Parkinson’s intervention could “save governments millions”

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