Parkinson’s is the fastest growing neurological condition in the world and currently, there is no cure. It’s a progressive disorder with more than 40 symptoms which affect everyone differently. There are over 40 symptoms, the main ones being tremors, slowness of movement and rigidity. Clive*, from Kendal, cares for his wife, Ingrid*, who is living with Parkinson’s. He explained some of the details which need to be considered when building new hospital facilities for patients with specific needs, such as supporting and helping those with Parkinson’s, and their carers.
Parkinson’s is a progressive neurological disorder, meaning some patients have more severe symptoms than others especially as the condition progresses, but most patients take medication to manage their condition. A huge challenge is that the medication needs to be taken at very strict times. Ingrid, like many other Parkinson’s sufferers, has a pill timer and alarm.
Her medication has to be taken every three hours during the day, at 7am, 10am, 1pm, 4pm and 7pm. If it is missed or delayed even slightly, she’ll experience an increase in symptoms which can take a long time to recover from.
We enjoy spending time with and learning from other people in the same situation as ours at the local meet ups called Parkinson’s Café (opens in new window), and various other sessions organised by the local Parkinson’s UK (opens in new window) support group. We also have regular check-ups from experienced nurses, which currently take place over the phone.
Night times can be tough. Ingrid can only sleep if it’s really dark and she can’t turn over in bed unaided. She has special sheets that have a smooth, satin central panel that help her move around and the ends are made of another special fabric for extra grip, helping her to be more stable when getting in and out of bed. It can be tough, but we are lucky to be able to maintain a good quality of life.
Luckily, Ingrid hasn’t yet needed a long stay in hospital. Her check-ups used to be face-to-face but since the Covid-19 pandemic, they’ve all been on the phone. Our in-person appointments were always very positive experiences. Ingrid was seen by specialist Parkinson’s nurses at Westmorland General Hospital (opens in new window), at a clinic that was run two days a week.
There’s never any traffic on the journey, and I can drop Ingrid off right outside the door and quickly find a parking space before going back to meet her; there are never any issues with parking, which makes the outing much easier. Most of the staff there know us by name, which is really comforting, and our main point of contact there has only changed once in seven years, so they know Ingrid very well, which is very reassuring.
The main consideration for me is that we wouldn’t want to be travelling further for Ingrid’s care. We’re both in our 70s and I have health problems of my own, so the fact that the specialist care is on our doorstep is very important to us.
I think the main worries would come if Ingrid’s condition deteriorated and she had to be admitted for a longer hospital stay. My concerns would be around Ingrid getting her medication on time, and the staff on the wards understanding the detrimental impact if that didn’t happen.
There could also be communication issues. People with Parkinson’s can often be very quietly spoken, with every word in the sentence spoken with the same intonation. This can mean that they struggle to be heard in more ways than one. I’d also worry about her getting stuck in bed if she doesn’t have access to the special sheets she requires.
Ultimately, I’d like to see staff on the wards being able to access the specialist care and knowledge that people like Ingrid require, so that they get better quickly, rather than have their condition exacerbated, due to a lack of knowledge.
Of course, new, improved hospital facilities is a very welcome opportunity. I just hope whatever the outcome, it’s a positive change for older, rural groups and those with specific conditions, as well as for the general majority of the people.
*Names changed for anonymity
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