The Gang Is Still Here - Why 2017 was the year of Patient Leadership

OK, so 2017 was mostly rubbish. But then again, here is the poet (Blake for those who don’t know) putting us right:

“What is the price of Experience? Do men buy it for a song?
Or wisdom for a dance in the street? No, it is bought with the price
Of all that a man hath, his house, his wife, his children
Wisdom is sold in the desolate market where none come to buy
And in the wither'd field where the farmer ploughs for bread in vain”

Five Years Ago

Five years ago, a gang of us – people who had life changing illness, injury or disability - decided to meet up. We were sick and tired (literally) and sick and tired of the way the healthcare system ignored our rights, our voices, our insight and wisdom.

Mark Doughty and I had just formed the Centre for Patient Leadership (CPL) and some of us called ourselves, mischievously almost, Patient Leaders.

Our vision as a little group was not entirely clear. We just wanted a place to hang out together, share stories, moan about how hard the work was, and think of ways we could help each other. It was a self-help group for the dispossessed. And we ate cake.

Nobody was using the term ‘patient leader’ which, to us meant something like – people who had been through stuff who wanted to change stuff. And, importantly, wanted to make change by ‘modelling’ a different way of being, primarily by shifting from victim and child mode to a way of collaborating on an equal adult basis.

We were doing different things - campaigning, self-management, entrepreneurship and innovation, peer support, being part of improvement or governance, all sorts... from all different walks of life and living with different conditions. But we had so much in common - we had wisdom and insight borne of suffering that we wanted to use to help others and to help improve the healthcare system.

I was learning a lot of this at the time from my friend Mark Doughty, who had been on his own personal and professional journey and came to bring his vast experience in personal and professional development to the fore in the CPL days. And continues to do so.

And I was learning a whole load from the gang who met for cake.

Denise Stephens, a hero of mine, had created her own online community and business, promoting user-led design in assisted living, ‘Enabled By Design’.

There was David Festenstein, a guru in the field of stroke recovery, entrepreneur and one-man generator of kindness.

Karen Maskell was bravely pioneering a new approach to supporting patient leaders in Berkshire, that she dubbed ‘HealthMakers’ – a brilliant semantic take on the Olympic ‘changemaker’.

Lynne Craven, a superb changemaker herself was lending support through self-management support, as was Mark and CPL in the field of patient leadership.

Alison Cameron – a close buddy from the off, we have so much in common – was beginning her venture of rediscovery and improvement, safety and national advocacy work which was to take her into the hearts of thousands of healthcare leaders (she would probably say ‘up their noses’ too!). She continues to be the bravest, most inspirational, person I know.

Anya DeIongh, already well established as a guru in self-management helped us find our energy and played a key role in a sense of collective identity and gathering strength.

There was also Ceinwen Giles, a leader in her own right already, who had helped CPL evaluate its early impact, Dominic Stenning, a local and regional mental health advocate, one of the kindest and brightest people I’ve ever met, another Dominic (Makuvachuma-Walker), who brought his radical internationalist insight and wit, from the mental health and peer support world.

And, of course, the unique Michael Seres, who despite his QPR fandom, became one of my best friends – and a leading light in an international movement to see patients as leading a new wave entrepreneurship. I could go on, but it sounds too much like the Oscars.

Pretty much ignored

And the point is we hadn't won anything yet. And at that time, the patient leadership movement was pretty much nowhere. Most people I met disputed the term patient leader, had no truck with patient leadership. I have to say, I do suppress a chuckle when I hear people now spouting the phrase - often still not quite knowing what the word means. They hated it a few years back. Lol.

So we ate cake and plotted, with no resources, no investment, no value being given to what we were doing collectively. We tried to meet every few months, scrabbling around for free venues or big enough cafes. We got a bit more strategic, but the best thing about meeting was just to hear each other, and share learning. Others joined us: Patrick Ojeer, Brenda Murray, Roz Davies, Laura Cleverley, Christine Morgan, Fiona McKenzie, Alex Silverstein, Trevor Fernandes, Sue Sibbald, Phil Sheridan, Sibylle Erdman, Kate James… amongst others. Apologies if your name is not here. I will add to the next draft!

Of course, this is to exclude others who were and are plugging away in their own fields, changing the world of health and social care. We also borrowed on other people's ideas, but acknowledged them as much as we could - the user movement and people like the National Service and User Network (NSUN), the community development leaders, the folk working on collaborative leadership within the health service...

The Toll

And every time one of us, some of us, or all of us took one step forward, we were knocked back. By our own health conditions, by the barriers in the systems we were trying to change, and – for me, the most surprising and hurtful thing - by co-option and downright plagiarism (you know who you are).

People sometimes sucked our brains for free, then spat us out, and used the ideas to prop up their own fragile egos and academic or healthcare careers. I still find it hard to forgive and be generous, but I am getting there.

However, a few took a punt and gave us encouragement and opportunity to grow. The CLAHRC in NW London were first. Then came others like Jeremy Taylor and National Voices, the Health Service Journal, the BMJ, The Eastern Strategic Health Authority (mustered into action by the extraordinary leadership of Steve Laitner), Diabetes UK. They could see something was brewing.

We also have our loved cousins in other countries - hello, BC! 🙂 who have led the way in developing strong patient leader networks.

Others, like NHS England and the policy wonks were slower, and frustrating to work with, but are coming around.

I learned about the enormous inertia around healthcare systems and that we were in for the long haul – that we had a good deal to learn from other social movements, feminism and the disability rights movement in particular.

It is amazing to think that it is five years since those early meetings.

Five years later…

The term ‘patient leader’ will not go away. Amongst many acronym changes, the rise and fall of PCTs, Vanguards, STPs, ACOs and similar BS, well-meaning but sometimes useless quangos, Simon Stephens, his beard and his empty rhetoric about ‘community assets’… we are still here, plugging away. Making small changes. Making big ones.

Patient leadership is here to stay. Let us reiterate, this is about people who have been through stuff, who know stuff, who want to change stuff – in whatever way they can. But through partnership. All those academics who will write Phds off our hard work, who will write books and claim the credit for our hard work, who will stew over semantics and definitions. You know what… who the fuck cares. The work is the work. And it will go on.

(Note to self for 2018: Lose the bitterness, Gilbert)

This year has seen many of the people listed succumb to relapses in mental and physical health, but we are still here. The idealism, sensitivity and passion can be a curse as well as a blessing. We need to be more gentle with ourselves. But until now we have had no collective sense of identity and belonging, no wider gang, no sense of wider collective virtue or validation. Every time we are put down, told to go away or ignored is a trigger for our own past losses and the way we were treated. The political is intensely personal.

This year, we have seen the NHS in contortions about where the next big ideas will come from, trying – consciously or unconsciously - to ignore us and ours - but we are still here. And, we now see many members of staff who get it - firstly those who have been harmed themselves and then more broadly those who see that we are out, not to put people down, but help.

And, of the wider world’s idiocies – they affect us deeply and call upon our forces of endurance ever more deeply. On an individual level, the cruelty of austerity and benefits systems has affected a few in the gang, and I could weep about that. Instead, this year will be my last in patient engagement as I move more to give back to the cause of mental health.

Rosamund

This year, we have lost a pioneer, Rosamund Snow, but we have seen the first steps towards a national network of patient leaders, the Snow Community, sponsored initially by the good folk from NHS Improvement. We are still here, Rosamund, with you in our, and at our, heart.

Personally, I have come through a couple of major relapses in my mental health and continued to work and write. I am proud of that. But when I look at the hardships of this year, I am prouder of the gang. I love them all to bits. And I remain immensely confident that the gang is growing and will continue to improve and transform healthcare.

2017 has been rubbish, but we learn through suffering, and now is not the time to give up. The healthcare system needs us and our sisters and brothers in the system - stressed and demoralised staff (clinical, support staff and managers) - need support, love and partnership.

It is perhaps ironic that it is, ultimately, patients – people who have had life-changing illness, injury or disability - who will help heal the broken health system. Partly this is because we know what it is like to have the courage, wisdom and insight to get through hard times – because we can help others bring jewels back from the caves of suffering.

We have always known this. But slowly, others are realising this truth too.

I hope 2018 is better. But you know what, 2017 has been amazing too. Because we are still here.

(C) 2017 David Gilbert

And here is the poet, in full:

What is the price of Experience? Do men buy it for a song?
Or wisdom for a dance in the street? No, it is bought with the price
Of all that a man hath, his house, his wife, his children
Wisdom is sold in the desolate market where none come to buy
And in the wither'd field where the farmer ploughs for bread in vain

It is an easy thing to triumph in the summer's sun
And in the vintage and to sing on the waggon loaded with corn
It is an easy thing to talk of patience to the afflicted
To speak the laws of prudence to the homeless wanderer
To listen to the hungry raven's cry in wintry season
When the red blood is fill'd with wine and with the marrow of lambs

It is an easy thing to laugh at wrathful elements
To hear the dog howl at the wintry door, the ox in the slaughterhouse moan;
To see a god on every wind and a blessing on every blast
To hear sounds of love in the thunderstorm that destroys our enemies' house;
To rejoice in the blight that covers his field and the sickness that cuts off his children
While our olive and vine sing and laugh round our door and our children bring fruits and flowers

Then the groan and the dolour are quite forgotten and the slave grinding at the mill
And the captive in chains and the poor in the prison and the soldier in the field
When the shatter'd bone hath laid him groaning among the happier dead
It is an easy thing to rejoice in the tents of prosperity:
Thus could I sing and thus rejoice: but it is not so with me.

If you liked this blog, do read others at futurepatientblog.com