Being a patient with Parkinson's during the pandemic

Kate is 75 and was diagnosed with Parkinson’s in 2016. During the pandemic, she had emergency surgery and spent several days on the intensive care ward before being discharged 2 weeks later. Here, she shares her tips for managing a hospital stay or outpatient appointments if you need to go to hospital during the coronavirus (COVID-19) crisis.

1

Talk to your family about what you need to keep your Parkinson’s under control, especially what medication you take, so they can advise healthcare staff.

After talking with the ward staff, my family believe I didn’t get my Parkinson’s medication for several days – they were very worried as it left me with problems swallowing and talking. They could also tell I wasn’t myself and couldn’t take control of my own care as I usually do.  

2

Keep a central diary of routine medical appointments. If you are admitted to hospital, your family may need to re-book these for you – you don’t want to be a no-show.

3

Nominate 1 person to talk to hospital or care home staff and make decisions for you if you don’t feel up to doing this yourself.

Due to coronavirus restrictions, my family couldn’t visit and relied on healthcare staff calling them to get any information.

4

Make sure you have a good mobile phone with enough credit and data – this may be your only way of keeping in touch with the outside world.

5

If you and your family don’t think the planned hospital discharge is safe, speak to the hospital social worker and ask about other options.

We knew it wouldn’t be safe for me to go home as I still needed 24-hour care. Thanks to a friend’s help, we found we could challenge this and ask for other options. I then spent 6 weeks in a care home recovering my strength and mobility.

6

Make sure your family know that healthcare staff or social workers may call them out of the blue. They shouldn’t worry about asking them to slow down, repeat or explain things, or saying if they’re not happy about your care plans.

7

If you have to go to outpatient appointments alone, ask if someone can dial in to take notes and ask questions. If not, write down any questions and take a notebook or voice recorder with you.

I had several outpatient appointments that I had to go to alone because of restrictions. My daughter was allowed to ‘sit in’ via phone for one appointment and took notes, which was very helpful and reassuring.