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

by David Gilbert

January 30, 2016

(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.






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3 comments on “Why Do You Do? The real question you need to answer”

  1. When I was in college 1 of my male friends who was a returned Mormon missionary "came out" and although I am straight I supported him and even drive him to another city with a few gay bars. We graduated and I went to work at Microsoft at the height of the AIDS crisis and I soon learned he had contracted AIDS and subsequently died.
    So I left Microsft and worked in an AIDS organization but most of our clients died about nine months after they first got services. Some of our staff took their lives and many were HIV positive.
    It was both difficult and intense working in the community (people would mail our business card back with death threats) but over a few years we change laws, stereotypes and the medical system found new treatments.
    That is why Ione reason why do patient advocacy and work in patient centered design as much as I can.
    Both to honor those that died and because I have seen people with no voice, power or resources rise up and transform healthcare from the ground up by collaborating with patients, providers payers and the community

  2. David. You ask the right question "Why do you you do what you do?"

    I have been caring for 30 years. I got married, moved into a family home and suddenly the elderly folk became my responsibility. With mother-in-law with severe long term conditions and father-in-law with Dementia. People from all communities including BAME do this all the time, to help loved ones navigate the system. I call myself the "Significant Other" as I am the one who makes sure the person who needs care is supported, has meals, has transport, takes their medication, has a warm place, has clean clothes, has some fun in their lives so they do not feel isolated.

    I had to leave work 10 years ago because I could not juggle my caring responsibilities and heavier caring burden. I thought I will get something part time locally. Suddenly I am over qualified for a lot of jobs. I started volunteering just to ensure that my sanity is not taken away. The system makes you angry,tries your patience and lets you down.

    Arguments about who pays, which part of the NHS will be responsible, is Social Care and provision firstly what the person needs. What I have seen is cracks through which people who are trying to do their best struggle and fall. I meet a lot of people who I support " If only someone had given me your contact earlier....."

    I champion for patients and families, can only do so for some " fish on the beach only"

    Now what keeps me awake at night is how can I influence those who make decisions to make it better for all the "fish on the beach"


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