Thread by @DeansKevin

I’ve just finished reading “Just Wobbling Along: My First Five Years with Parkinson’s Disease” by @HMellorMac and can highly recommend it for all, especially healthcare professionals. #MedTwitter

Buckle up, cos it’s time for a book review! (1/11)

amazon.co.uk/JUST-WOBBLING-…

I’m going to reflect on the key themes that struck me on reading Helga’s account of her first 5 years with #Parkinsons. While not wishing to distract from the Parkinson’s context, I suspect some themes will strike a chord with people who live with other chronic conditions. (2/11)

Knowing something’s wrong; needing a diagnosis:

The journey through various suggested diagnoses. Depression. Functional Tremor. A growing sense that Functional Tremor doesn’t explain things. (It’s notable how many people with chronic conditions have a journey like that.) (3/11)

Breaking significant news:

People will always remember how news was broken to them. It’s certainly not “routine” for the patient, and should never become “routine” for the healthcare professional.

“15 minutes to change the entire course of my future,” as Helga reflects. (4/11)

Ensuring the information provided is suitable for that patient at that time:

Helga was sent an envelope of leaflets about things that were inappropriate for her at that point in time: feeding tubes, mobility devices and support for carers. Not what she needed or wanted. (5/11)

The value of patient peer support:

What the NHS failed to provide, fellow patients provided in online support. Helga even set up her own Facebook blog. Patient groups can be invaluable for people with chronic conditions, and often fill a void left by health services. (6/11)

The mismatch between what matters to the healthcare professional and what matters to the patient:

As healthcare professionals, we need to find out what’s important to the patient. Oh, and if anyone can invent an automatic contact lens putter-inner that would be good. (7/11)

Significant discussions need time:

The decision to start medication is a defining moment. The clinician needs to take time to explore the issues and provide the info to help the patient make the decision that’s right for them. “15 min in and out” is unlikely to cut it. (8/11)

Think outside the box:

Work with patients to adapt treatment to what works for them. Helga describes the reactions of 2 nurses to her suggestion of splitting a drug dose. One gave her a ticking off; the other advised her how to do it safely in a way that works for her. (9/11)

The positive experiences:

A good physiotherapist
A doctor who listens
A doctor who’s genuinely interested in all of the person: “my mind, and my whole body, not just the parky bits.”
A doctor who gives the patient the time they need. (10/11)

There’s a lot more in the book. Let’s just say I highly recommend it. And I hope I’ve done it justice in this thread, but it’s @HMellorMac’s book, so Helga, it’s over to you to add/correct anything you’d like to.

Oh, and proceeds from the book go to @ParkinsonsUK. (11/11)