Why Do You Do? The real question you need to answer

Why Do You Do? The real question you need to answer

(The names of people below have been changed. Trigger warning: this article includes references to suicide)

What does a Patient Director do?

I’ve been asked that question a lot recently as people become intrigued by this new and exciting role. I’ve had seven people contact me who have said that their organisation is interested in appointing such a person. So I do need to explain what I do.

But, as I was thinking about writing a blog on it, my mind drifted.

I am working so hard, I thought I deserved to spend some precious spare time writing poetry instead. And as I let my head loose, a poem emerged about the people I had once met and been friends with during my dark years in the psychiatric system.

My experiences during those six long years have fueled my passion for healthcare change, social justice, and my 30 year professional career in patient and public engagement – first as angry outsider, through supporter of improvement and now as a Patient Director.

Rewind 30 years…

After weeks of restless prowling around the psychiatric ward grounds, Andy drowned himself in a reservoir. A few days after putting his fist through a grilled window, Colin went off on a rainy Saturday to hang himself in his caravan.

Denise had flung herself off a balcony after her father died only to find herself still alive and paralysed from the waist down. On the ward, she was everybody’s best friend and encouraged me to play the guitar again. After leaving for a residential home, she choked on her food while unsupervised. I still have the letter she wrote to me a few days before she died, saying she was again dreaming of becoming a beautician.

There was a woman who explained patiently to me why she had lost her lower limb (you don’t want to know). I remember a distressed older man who stayed up all night chanting the letters N-E-E-R-U-A-M over and over again. Only after a night without sleep did I realise he was chanting a woman’s name backwards. I never found out why.

I witnessed cruelty to a disabled man with longstanding psychosis. And I did my best to stop it. Once I was hugged by a young boy in tears (who could not have been more than 15 and who should not have been in an adult ward). Another time, I was harassed by a man who said he would kill me. Several friends talked to me for hours when I was suicidal (which was much of the time).

I sat up all night with a guy who dealt drugs who said he had a gun in his car and, if I needed it, would lend it to me if I was serious about topping myself. One friend was so depressed she often became catatonic.

A small group of us clubbed together sometimes for a take-away Chinese. I remember sharing sweet and sour chicken with a skinny woman called Sally in the local park. Years later she had a child – something she had never dreamed of being possible. That child came to our son’s school. A couple of years later she collapsed with a fatal heart attack while walking over a railway bridge with her son. Sometimes life just sucks.

My friends and fellow inmates suffered terribly. And they displayed everyday heroism just to put one foot in front of the other. We shared stories (many almost unbearable), innumerable games of scrabble and chocolate biscuits. Some of those people are still alive (one became my wife), some died, some I lost contact with. I hope they are OK.

Why do you do?

The people I met on the ward are why I do what I do. They helped me. They taught me.

I am fortunate to be alive. I am even more fortunate to have been able to pursue a professional career that has allowed me to try and change the conditions for people who were, and are, less fortunate.

My work – like that of many others – is a small memorial to the pain suffered, the courage and sheer bloody resilience I witnessed on the ward. As someone said to me last week: ‘Passion is everything. You can learn the rest’. So I did.

So when you are next asked ‘what do you do?’, tell people that the real question is ‘why do you do?’. And then answer it.

And here is the poem that emerged from that restless sitting…

You Don’t Write Poems

You don’t take photographs of friends
on a psychiatric ward.
You don’t write poems.

This is not the right time
for a memorial, or place
for a blue plaque.

All the pictures you have you scratch.
Any leftover words
you save to explain yourself.

Now I write to see his face
the day before he disappeared
forever to his caravan

or touch his hand
reaching out to offer me
a chocolate digestive biscuit.

 

David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.

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