Three in five Parkinson’s disease patients are having their lives put at risk by not getting “critical” medication on time when they are in hospital, new research has revealed.
Tens of thousands of people with the progressive neurological condition are not routinely getting their medication at the time they need it while in hospital, “which can lead to serious and irreversible harm”, a new report by charity Parkinson’s UK has said.
It claimed a lack of staff training and the inability of patients to either be prescribed or to take their own medication on time amounted to “a major safety concern”.
The report, called “Every Minute Counts”, said even a 30-minute delay “can mean the difference between functioning well and being unable to move, walk, talk or swallow”.
“Missed or delayed doses of Parkinson’s medication can lead to increased morbidity, mortality, and length of stay,” the report said, adding that some patients “never recover” the ability to talk and walk.
Parkinson’s is the fastest-growing neurological condition in the world, affecting motor functions and causing a range of physical and mental health issues, but there is no cure, and so treatment that slows down its progression and controls its symptoms is vital.
But less than four in 10 hospital trusts in the UK have mandatory “time critical medication” training and half do not offer it at all.
One in four hospitals do not let patients take their own medication when admitted, leaving them reliant on staff prescribing and administering them at regular intervals, and knowing the importance of timing despite the lack of training.
Treatments work by topping up depleting levels of dopamine in the brain or acting as a substitute for the chemical. Delays mean less dopamine and more symptoms, which can make it harder for patients to communicate and move, and increase tremors, agitation and confusion.
The report and Get It on Time campaign are calling on the government and NHS England to implement self-administration policies and e-prescribing across all hospitals, and to ensure staff treating Parkinson’s patients are trained in both the condition and time critical medication.
One-third of the 153,000 people in the UK with Parkinson’s are admitted to hospital each year, usually because of a trip or fall, an infection or a cardiac or gastrointestinal issue.
Getting medication on time
However, the majority cannot currently expect to get their medication on time.
A survey of more than 1,100 people with Parkinson’s who had been admitted to hospital in the last year found 58 per cent did not “always” get it on time. Of those people, 40 per cent said it “negatively” affected their health, while 40 per cent were “not sure”.
People with Parkinson’s spent an average of 10.2 days in hospital after being admitted as an emergency in 2021-22, costing the NHS £267 million.
Not getting their medication on time added four extra days to their stay on average.
Patsy Cotton, a retired advanced nurse practitioner in Parkinson’s, said it was common for people to have “severe anxiety around being admitted to hospital” because “they feel they can manage their condition with their medication better at home”.
She said people are usually admitted with an unrelated condition, “which means they are seen by health professionals who are not Parkinson’s specialists”.
Samuel Uregbula, 67, became a “totally different person” due to missed and delayed doses of his medication, his wife Anna, 57, said, which included hallucinations and confusion, such as telling her that he “doesn’t like this hotel” and they need “to pay up and go”.
She said: “I live in constant fear that Samuel is going to have to go back to hospital. My main concern is if he went into hospital, the administering of medication is more complex than it is at home. In hospitals they give medication to all the patients at the same time because they are so busy, but that doesn’t work for someone with Parkinson’s. If you have medication other than the norm, then you are forgotten. And that’s exactly what happened to Samuel.”
More training needed
Julie lost her father, Brian, in 2022 at the age of 86, when he was left immobile and incontinent after missing doses.
She said: “I don’t blame the doctors and nurses for not giving Dad his Parkinson’s medication on time, but I do think they need more training on the importance of time critical medication.”
Diabetes UK, Epilepsy Action, the Royal College of Emergency Medicine, and the National Aids Trust are also backing the calls for improvements to time critical medication, self-administration and e-prescribing.
An NHS spokesperson said: “While local NHS trusts are each responsible for their own medicines policy, NHS England has commissioned a range of support, information and resources for organisations on this issue, which have been used by hundreds of health professionals - we will continue to encourage their use so patients in hospital can get their medication in a timely way.”
The Department of Health was approached for comment.