Movers and Shakers: Drugs in Hospital
This week’s episode of Movers and Shakers is about an issue which is understood by just about everybody who has Parkinson’s - and apparently by hardly anybody working in a hospital - the importance of taking your drugs on time. That becomes particularly difficult in a place where you might assume that medical professionals would ensure good timekeeping - a hospital.
In the first year or so after diagnosis, we may be fairly casual about our drugs routine, not worrying if. we miss a pill or take it an hour late. But then we learn about the complex interactions between our medication and what we eat and many of us become fanatical about our routines.
Just how damaging it can be when you get out of sync is illustrated by the absence from this episode of Gillian Lacey-Solymar. As we were recording the edition about benefits which we published last week, Gillian went into a complete freeze, unable to move at all. She had literally to be carried out of the pub by her husband Mike and driven home. It turned out that she had eaten too close to the time she was due her medication and this was the result.
But when a person with Parkinson’s goes into hospital for whatever reason both they and their partners or carers have to be prepared to go into battle against a system which, too often, is deaf to their needs. In this episode we hear about two chilling case studies but we also get the good news from two healthcare professionals trying to make things work better.
First we hear from Cathy Perkins, whose late husband John was diagnosed with Parkinson’s in 2018 but who two years later contracted ulcerative colitis and had his colon removed. He was in and out of hospital for a series of operations and Cathy was amazed at the lack of understanding of his condition:
‘I was surprised I had to explain to the surgeons the importance of taking the Parkinson's pills at set times and was told that as he obviously couldn't take pills during the operation, he should double the number of transdermal patches he'd been prescribed.”
John’s first operation was not a success and he was soon back in the operating theatre but without new patches being applied and Cathy reckons he went days without any Levodopa. Even when he was back on the ward for seven weeks things were not much better, with nurses having continually to be reminded about his medication and the fact that it needed to be taken at least half an hour before or after a meal. Sometimes Cathy would arrive in the morning to find the previous night’s pills still sitting on the bedside table:
“I don't know how much the irregularity of pill dispensing contributed to John's Parkinson's decline - and he had had major surgery - but I have been told that in such cases decline is all too commonplace.”
John died in 2022, not from Parkinson’s, but his wife believes his final years were made more uncomfortable by what. happened in hospital.
Hugh Hadfield tells us about his 85 year old father, who is currently in hospital for the third time since he was diagnosed with Parkinson’s two years ago. Hugh still can’t quite believe what happened the first time:
“I had assumed that once he was in the NHS system, he would get all the Parkinson's medication that he needed - and at the right time. None of that happened. And in fact, the first time he went in, he didn't have his medication for 48 hours. So he went in for something which was relatively minor and ended up, literally, in a nightmare because he was hallucinating. It was a really bad outcome, terrible experience for him.”
And on this latest visit, things don’t appear to have improved, with nurses apparently knowing that Hugh’s dad needs his medication on time but saying they don’t have the authority to give it him:
“To me, it beggars belief really that something so simple, can't be resolved.”
But we hear from a man who has shown this can be resolved. Nick Brydon is a Parkinson’s Nurse from Ayrshire, who won a Parkinson’s Excellence Award for his work on improving the situation for patients at Biggart Hospital in Prestwick.
The answer was relatively simple - better training for staff about Parkinson’s and better record-keeping of when medications are taken. And that was made possible by the introduction of electronic prescribing. It seems extraordinary but until recently records of what drugs were given to each patient were kept on scraps of paper making them very hard to audit. Nick says his hospital was amongst the earliest to go electronic, giving them a much clearer idea of wht was going on: “It's recorded to the second so it's not a two hour window like paper card indexes.”
The first audit back in 2014 showed that just 41% of patients were getting their medication on time - the latest check puts it at 76%. Now the latest figures are available to each ward every morning as a constant reminder. And there’s another innovation - an electronic whiteboard with a list of patients and an icon which changes colour to indicate when their medication is due.
Emma Cook, who's the medication safety officer at Wirral University Teaching Hospital, tells us that it is vital that patients with any condition get the right medication at the right time. But on top of all of the pressures faced by the NHS - the aftermath of Covid, long waits in A&E, people being treated in corridors - she says Parkinson’s patients present a particular challenge:
“Your Parkinson's is not the same as the person sitting next to you. And actually that creates huge challenges in hospital because everyone has different medicines at different times. Not at standard times, so we need to be flexible enough so that you can have them when suits you.”
Emma saysl that the moment someone with Parkinson’s enters hospital it is vital that medical staff engage with them or their carers to get information about their medication. And, having spent several days in hospital recently waiting for treatment on a broken elbow, I have learned how important it is for the patient to get that information across.
Plenty of things went wrong with my treatment but I got my medication on time - because I had it with me, along with an app listing it and what time it should be taken. I was able to show this to a helpful young pharmacist sent to prescribe me drugs which the nurses would have administered and he was sensible enough, after listing my medication, to see that it was best to leave it to me.
By the way, the Movers and Shakers are pressing ahead with our Parky Charter, calling for improvements in the way Parkinson’s care is managed in the UK. We plan to take the Charter to Downing Street on April 11th, World Parkinson’s Day. But we need your backing - please sign here to add your voice to those seeking change.
I’ve to say this is a highly valuable piece of writing. My father had Parkinson’s and the issue of medication was a constant struggle with both the hospitals and even within his nursing home. A member of the family would often need to rush into these environments because my father was not receiving his medication correctly or none was even provided to him. So frequently we found ourselves explaining what and when a particular medication was to be administered to him. In some cases we had to actually provide training to medical professionals ourselves. On one particular occasion during a hospital visit one of his older grandchildren had to actually write down precisely what and when he was to receive his meds. It made a difficult situation somewhat frustrating, worrying and frankly at times was so utterly unprofessional.
With my father being in hospital for much of last year and frequent further emergency admissions from rehab we had tremendous difficulties with meds, exacerbated by rule that only meds dispensed from hospital pharmacy could be used (not ones we’d brought in) and then issues with stock, long delays, staff not administering on time (‘computer says no!’) and importantly not being checked if they’d been swallowed so face/fingers all stained orange and meds not being absorbed…. or taking meds with yoghurt so could be swallowed. Even after reminding staff daily, requesting all info and concerns being added to notes and plastering signs on wall it was a daily battle. There has to be resolution on this as I believe it causes PD patients to decline unnecessarily. Thanks for highlighting this.