It's just not good enough...

I’ve been posting occasional comments on Twitter for a few years now – some of them about living with Parkinson’s Disease; some of them about Robert Plant (the greatest living Bluesman on the planet); and some of them about West Ham United (a rather excellent football club from East London).

On Tuesday, I posted a tweet describing how a Neurological Consultant had delivered a Parkinson’s Disease diagnosis to a new Patient:?‘You’ve got 5 good years left’ is how my fellow PD traveller was informed. He is 50, and to say he wasn’t expecting anything like this diagnosis would be a fairly huge understatement.???

The reaction to my tweet has blown me away, and it is clear that the vast majority of us living with PD have had similar experiences.?Some of the responses I received are truly heart breaking:

-???????‘I was told I had PD, and was instructed to look it up on reputable sources of education’;

-???????‘I was told alone…I remember nearly driving my car purposely into a bridge, (going home)’;

-???????‘…(The) good news is you will die with PD and not because of PD’;

-???????‘It’s Parkinson’s or a brain tumour. Come back on Monday and we’ll run more tests’.

When I received my own diagnosis twelve years ago, I was also blown away: ‘Ah yes, you have Parkinson’s Disease but don’t worry, it won’t kill you’; to which I replied ‘I’m 44, not 74’.?The response from my (ex) Consultant knocked me back further: ‘that’s nothing, there was a girl in here yesterday and she’s 29 and she has Parkinson’s too.’?Was that supposed to make things easier??I somehow managed to drive home and break the news to Joan, my wife.?We cried our eyes out for the rest of the day.

It’s just not good enough.?No one should have to endure an experience of gross insensitivity within the nightmare of an incurable diagnosis.?There is no doubt that a Neurological Consultant is a quite brilliant person with incredible ability and intellect.?But that intellect and ability counts for nothing if a Consultant is unable, or unwilling, to empathise with their Patient. These four words ‘You have Parkinson’s Disease’ immediately up-end the world of the Patient who hears them for the first time.?Parkinson’s is a degenerative condition that is with you every day for the rest of your life.?It is not the end of your life; rather, it’s a huge change to your life that needs time and multidisciplinary care to continue living with it.?I hate my PD diagnosis.?I love the community of People living with Parkinson’s who have helped me to get out of bed every morning and face another day.

We need each other in order to help each other navigate through the challenges that Living presents us every day - true, I think, for everyone, everywhere, not just People living with PD.?How we choose to interact with each other has a bearing on each one of us.?Is it too much to expect that brilliant Consultants tasked with delivering life changing ‘news’ could do so in an empathetic fashion, mindful that this moment will live forever with the Person facing them now??

It’s just not good enough otherwise. ?