Through the blog series, I get the chance to post some amazing stories – flagging up the realities (good and bad) of passionate people who are involved in the health and social care systems. I use the plural deliberately as generally health and social care have a long, long way to go before they join up in the way policy makers (and most people trying to navigate their way through the maze) are hoping.
I meet and have deep conversations with people on both sides of the fence – and a few sitting on it. 😉 Professionals and ‘service users’. Us and them… Or indeed them and us.
The huge irony is that we are ALL either existing or potential users of care services. So why the big divide?
There is a lot of talk about bridging the divide. There is a government drive for patient involvement. Yet almost everyone is struggling to achieve this in a really meaningful way. Policy makers are finding out, often the painful way, that genuine involvement and co-production are very far removed from the old style ‘we-know-best-but have-left-a-few-details-to-tweak’ style of consultation. The extremely powerful guest blog by Alison Cameron last week (Part 2 is here) has been – and will be – hugely influential in driving this message home.
A lot of interesting things are happening around Whose Shoes?® – both the blog series and the actual Whose Shoes?® – Making It Real discussion tools. At Whose Shoes?® workshops, one of the most regular comments is that the tool helps people to ‘bridge gaps’ – not just the more obvious learning by professionals, but university students experiencing a foretaste of the reality of their placements; people who use services suddenly understanding why it is difficult being a social worker trying to meet conflicting demands… Lightbulb moments!
So I am particularly thrilled this week to gain membership of the College of Medicine. Their mission statement is “looking to break the mould of conventional thinking and help build a health and social care system that defies tribal boundaries and puts the patient first”… I think we will get along very well together. 😉
Recently, I attended the ‘Patient Leaders’ workshop at the College of Medicine Conference. The summary was that patients have so much to offer but professionals are struggling to find an effective means of tapping this rich vein of expertise in a way that encourages people to relax and speak openly about what needs to change and work together as equals…
Ahem, I have some tools that will help. Silo busters.
And people on BOTH sides of the fence believe in them.
Alison Cameron wrote about her on-going battle to recover from serious mental health problems and how ‘the system’ all too often hinders rather than helps people to recover.
In addition to the need to join up health and social care, Alison’s story highlights the pivotal role of adequate and suitable housing. Housing is often the Cinderella in the triage of care services; unsuitable housing has devastating consequences for well-being.
It maps Alison’s amazing journey from passive recipient of services to Patient Leader, now involved in cutting-edge health leadership and research programmes.
It was very courageous for Alison to share such a personal story; she is incredibly well-placed to commentate on the on-going barriers to full involvement by patients as equals in the quest for quality and equality. It is time to listen.
Alison and I are planning to run Whose Shoes? events together to help people explore these challenges and work for holistic, empowering support, making full use of the ‘assets’ of the people themselves and the importance of self-leadership. Another extremely useful resource in this context is the wonderful ’20 commandments for mental health’ written by my friend… she who tweets as @nurse_w_glasses.
As well as Alison’s carefully written blog, many readers will have followed the more spontaneous Twitter conversations: the on-going frustrations, triumphs, perceptive observations and sharp wit. Like all of us, Alison’s story is a work in progress, rather than a ‘historical’ piece and this is what makes stories so helpful to others who may be dealing with similar issues.
I want to use it, and all the other stories on my blog, less for the specific story but more as an example. It is a story of our times. A story of a wonderful person facing huge trauma that could happen to any of us – a mental trauma, a road accident, a terrorist attack. Suddenly everything changes and leaves us at the mercy of formal and informal support systems as we try to rebuild shattered lives.
Meeting amazing people and hearing their stories makes me realise just how little we sometimes really know people. An incredibly feisty public persona hides our vulnerability, as we do our best to wear our ‘I’m absolutely fine’ public faces, especially perhaps in the legacy of the ‘stiff upper lips’ society of Britain. A requirement of civilisation is that we behave in a civilised manner and sometimes it comes at a cost.
It is heartening to hear of the wonderful peer support that ‘Patient Leaders’ give each other. This shines through the banter of the fab #PatientLeaders Twitter chats (8p.m. Tuesday evenings).
And an on-going question for professionals and patients as they seek to work more closely together:
Instant judgement about people is an interesting topic. Some business gurus reckon that you have seven seconds to make a strong first impression in an interview – how scary is that? Judgement is a vital part of our self-protection system: deciding whether we trust someone. But there is a very thin line between judgement and pre-judgement or prejudice. At the start of my Whose Shoes? workshops, I often do an experiential exercise called ‘challenging assumptions’ – but that’s another story… 😉
There is an urgency for positive change and I am delighted that Alison also contributed to Andy Bradley’s powerful ‘Safe Care – The Fierce Urgency of Now‘ series of six guest blogs about compassion.
‘Urgency’ is the key word and the need for compassion is paramount. But we also need practical action. We need practical action to stop people falling through gaping holes in the system in the first place and practical joined-up thinking to enable people to recover in a sustainable way.
I have seen some interesting blogs recently about empathy and compassion. To me, both are a vital part of being human and I have written before about how increased empathy leads to increased compassion. But I think it is important not to get too fussed about semantics… Compassion, empathy, person-centred, storytelling… – let’s not have a huge debate about which is the perfect word or (perhaps the modern equivalent) the perfect hashtag.
It is all about listening to people, and working WITH others to improve lives by identifying shared values and embedding the message that ‘everybody matters’.
We need to ask the people who really know; ask them what works and what doesn’t work; ask them what we can do differently to make a difference:
I share a lot of anecdotes with Alison. One she told me the other day has led directly to a new Whose Shoes? poem:
A hospital porter named Jim
Thought consultants could be rather dim
He’d worked there so long
He knew what was wrong
But nobody thought to ask him 😉
Whose Shoes? A catalyst for change in health and social care 
Just wanted to thank Gill for allowing me to be heard. So often people have chosen to see my raft of labels and not listen to what I am trying to say – it is more palatable that way. I must put my experiences to positive use and be part of bringing about change – no matter how small. Now, my Experience Based Co Design project back on my old psych unit will be innovative as in addition to patients and clinical staff we are going to involve on an equal basis the domestic staff. Jimmy the well past retirement stalwart of the ward will be a star. He has been there so long I think they built the place round him. “Dem is shoving de teabags down de toilet AGAIN!” – then there are the best nursing staff they have – two Health Care assistants Kevin and Marshall who used to be security guards and thought “I bet I could do that job” and they did and can, better at relating to people often in great distress than I have ever seen. You see, we all have stories, they are are all valid, and they all offer often priceless insights into where we’ve gone wrong, and how we can make it right. Until next time, partner in crime! x
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Thank you Alison. Please keep the anecdotes coming – who knows, it might inspire another poem 😉 I loved the story about the security guard who was called to “sort a difficult patient out”. He ‘sorted’ the person… by listening and treating them as a valued human being…
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Congratulations Gill on gaining membership of the College of Medicine – as well as keeping us mere mortals involved in learning more about the caring professional world
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Thank you Charlotte. Mere Mortals R Us. 🙂
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Hi Gill,
I am in the middle of a diagnostic process involving six new professionals. I met them all last wednesday and spent an hour working together. Last Friday I had another appointment that has had a very encouraging experience. It would be really good to talk this all through with you before long. My very trenchant views expressed in your blog may need to be revised in the light of this experience. There seem to be endless stages in the diagnostic process and I have just move along to the next step. the possibilities look really exciting. I am not typical. My journey is not typical. At last there is a real effort to help understand the symptoms I have experienced and to explain this to me.
Best wishes,
Larry Gardiner http://about.me/larrygardiner
Date: Mon, 8 Jul 2013 06:00:43 +0000 To: gardinerl@hotmail.co.uk
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