Medicine in Hospital

Updated: Apr 22

What times do you take your Parkinson's medication? Some people are regular as clockwork – morning, lunchtime, evening – while others work to a more erratic schedule. However and whenever you usually take your meds, that system is likely to be disrupted in hospital. On this episode of Movers and Shakers, the gang gather at the Notting Hill pub to sort through the challenges of keeping up your medication regimen in hospital, and are joined by some fabulous guests who are revolutionising the pharmaceutical distribution from within the health service.

By Podot

Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.

Guest Biographies

Emma Kirk

Specialist Pharmacist - Lead Medication Safety, Medicines Use and Safety Team

Emma provides support and expert medication safety advice to Medication Safety Officers across England and organises the monthly national medication safety webinars in collaboration with NHSE and MHRA colleagues. As a member of the MUS team, she develops and publishes medication safety resources on the SPS website. Read more about Emma and the Specialist Pharmacy Network here.

Nick Bryden

I trained as a general nurse in my early 30s. When I qualified I worked in a geriatric rehab ward, where I met lots of people living with Parkinson’s.

I ended up shadowing a Parkinson’s nurse in my spare time and went on home visits with her. Seeing a person in their home environment with their partner or family helped me develop a real sense of the condition and I learned a huge amount.

I was lucky enough to become a Parkinson’s nurse for the Ayrshire region in 2010. I’m one of 2 Parkinson’s nurses covering our region, and we work closely with the consultant and the Parkinson’s local adviser. At the moment we have around 700 patients.

Ayrshire is a beautiful place and a popular area for people to retire to, so we do find we have more and more patients using our service. I also have 3 relatives with Parkinson’s – 2 of which use the same service.

Read John's Story

By Cathy Perkins

John was diagnosed with Parkinson’s in 2018 after developing the characteristic gait of Parkinson’s patients, a frozen expression and could no longer use a pen to write. He was told he had the disease, that he wouldn’t die from it and was offered Sinemet. His Parkinson’s symptoms progressed rapidly and his consultant transferred him to the NHS neurology department at Addenbroke’s where scans of his brain were taken and the meds were increased . In August 2020 John was diagnosed with ulcerative colitis and was unsuccessfully treated before having his colon removed and a stoma created. This was done at our local hospital.

By this stage John could barely speak and was having difficulty swallowing. He still managed to walk short distances, was fully aware of his surgery and frustrated by his inability to communicate.

I asked the colon surgeons and the Parkinson's consultant what to do about John’s meds while he was having the operation and recovering from it. I was surprised that 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 had been prescribed.

I don’t think anyone realised that the operation would take nine hours and that after a few days in intensive care John didn't recover but had to have a further operation and further intensive care. All this time without the levedopa medicines he had been told must NOT be stopped abruptly. The patches were meant to be changed every 72 hours...I know that didn't happen while he was in intensive care.

There were still Covid restrictions in place and I was only able to be with John most of the time because he couldn’t speak for himself. He was moved around the hospital once out of intensive care and I would find him in the morning unsure whether he had been given his pills, whether they were still on the bedside table or out of reach on the table with him unaware that they were there at all.

It wasn’t much better when he was moved to the ward he stayed in for the next seven weeks as I was having to ask different nurses every day for pills to be delivered either half-an-hour before, or half-an-hour after food as they should be taken. As for the food itself ...I doubt it was any good for most of the patients with Parkinson’s or otherwise! I took soup and food he could swallow into the hospital for him. I remember thinking I couldn't tackle both pill timetables and the lack of food he should have had for his conditions.

John was confused sometimes while in hospital. I asked if this confusion was caused because he was not getting his pills on time and was firmly told he was getting all the pills that had been prescribed for him. The following morning the bedtime pills from the previous day were on his table as he had not been woken up to take them.

I then tried to contact the neurology department in the hospital hoping that although John's consultant didn't work there I might find someone who could help explain to the staff of the surgical ward the importance of timing for Parkinson's pills. I couldn't visit the department because of Covid restrictions and no-one answered the phone or my messages.

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 have been told that in such cases decline is all too commonplace.

John left hospital having been trained to use a walking frame only the day before after being in bed for eight weeks. He never used stairs again, and fell three or four times a day for the rest of his life.. For two years he lived at home with me, took his pills regularly, and was able to use his computer and tend his garden until he died of bowel problems in October 2022. I don't think the hospital staff were entirely to blame for what I saw as a lack of care for John but think something should be done to help Parkinson's patients in hospitals being treated for other conditions.

John's Consultant at Addenbroke's, Dr Roger Barker, says that in Cambridge, nurse specialists are now employed to assess Parkinson's patients to ensure they get their meds 'at the right time in the right way'. This should happen everywhere.