On Monday, I posted Part 1 of Alison Cameron’s astonishing story.
It has been a ‘best seller’ …… I will post part 2 here, but then will re-visit shortly as these powerful blogposts have raised a LOT of issues about the current state of health, social care and HOUSING (yes, housing – that Cinderella-not-quite-part of-the-integrated-family service)…
ALISON CAMERON – HALF LIFE – Part 2
I started in small ways after having the seed of hope planted by hearing the inspirational Doctor Rachel Perkins speak. I had tottered into a meeting run by the mental health charity Mind in early days after release from the first long term admission to the ward. I assumed my useful life was over. My only interaction virtually for some nine months had been responding to daily bellows of “supper time!” or “medication!” so little wonder I had no faith that I had any skills or assets left. I heard Rachel speak of how, while a Clinical Psychologist, she herself had ended up on a ward, having been diagnosed bipolar. In fact, it had been the start for her, not the end. She is now a leading exponent of the Recovery Model railing against “care” as “cotton wool. What we want are opportunities”. She has used her experiences to become a catalyst for change. I decided if she could do it, so could I.
Initially I ran the gamut of the tick box “involvement” exercises and did more questionnaires than I had curry in the psych ward canteen (which was EVERY day). I was left feeling frustrated at the largely meaningless nature of most of it. I became increasingly disillusioned that I was simply being wheeled out to create the illusion of genuine commitment to being “person-centred and keeping the service user at the heart of everything we do” and other trite phrases such as “nothing about us without us”. I could hear loud and clear though that services were now talking the language of “involvement” “empowerment” etc but could see that my involvement was to a great degree still rather tokenistic and that professionals often had a profound fear of competent, forthright service users who were often at least as well informed and skilled as they were. They were happy to allow us a place at the table as long as the fundamental power imbalance remained in place. I passionately believe that patients, particularly those with long-term conditions, bring with us a huge range of assets which are a vital resource that is still not being fully utilised.
Patient and Public Involvement remains largely unrepresentative of the whole community of asset holders. The so-called “hard to reach” for example are rarely present in formal structures. I believe that using co -productive models, which incorporate reciprocity so that tangible value is accrued from involvement on all sides, are the key to addressing this. On a practical level, I want to use my talents actively to contribute to a process of change in Patient and Public Involvement whereby it is fully recognised that people like myself may well be “hard to reach” (in professional opinion), may have experienced homelessness, long term illness, disability etc, but still have a lot of skills and assets – both expertise by experience but also the whole wealth of skills that become subsumed by labels stamped on us without our input in the decision.
Nowadays, I am part of an ever growing tribe of people who get this message. I am in contact with Edgar Cahn who has described me as a “hellraiser” which coming from him is the biggest compliment since I was told I was over committed to the truth. I am now a Fellow of an academic leadership and applied research programme where I am using my lived experience and professional background to demonstrate to clinicians and other Health Care professionals that working with us as equals may be a challenge, or even disruptive, but it is that disruption where the creativity lies. My own Fellowship project using co-design tools is based back on the very ward where I was last a patient, which sends out a huge message – even if it is “lunatic takes over asylum” – and I will be ensuring that that humour, which has often been the key to my survival, is part of it all at every stage.
With clarity that comes with reclaiming the power in my own life, I am now open to noticing real opportunities around me. Social media helps me reach out to the wider world and link up with fellow members of the “tribe”. Through Twitter, I have among other things been approached by the NHS Leadership Academy who responded to my Twitter observations that their views of Leadership seemed to be restricted to those in paid employment within the NHS and this was missing out on a huge opportunity to tap into the vast font of lived experience. I will be starting one of their programmes later this year.
There are kindred spirits out there which is key to survival at times when I feel I am facing insurmountable barriers, internal and external. And when I get to meet them in person, even better. I met the amazing Gill Phillips recently. I love her work. I really get that it is not sufficient for services to decide suddenly “we are now DOING personalisation/co production, ok, so what do you want…?”. Not surprisingly there is often an embarrassed, if not fearful silence. Rachel Perkins pointed out that she had been involved in Mental Health at the time people were being released from the old asylums. She said if you had suddenly asked them what they wanted, they would have replied “to stay where we are”. When we have had our identities subsumed by labels: diagnostic, educational, age, race, etc, we are often trapped in a bunker that keeps us in but also keeps us safe. Gill’s wonderful Whose Shoes?® is one of the creative, innovative ways of unlocking the bunker, to allow the capacity-building which is essential if there is a genuine will for this to work.
I know what it is like to be trapped within concrete walls surrounded by landmines. I may have needed a hand to hold as I took steps across the field until I felt safe enough to let go. My last leap to freedom is when I cease to be dependent on Benefits and am finally able to make decisions for myself, rather than await the deliberations of “care” professionals.
That’s the thing with all of this – it gives us ideas above our station.
“No more subordination of those we help as the price exacted for helping.
No more ongoing dependency as the implicit price for receiving help”.
Thanks Alison for writing such a fabulous, inspiring and heartwarming blog and thanks Gill for providing a place for connecting hell raisers! 🙂 I’d love to hear more about your fellowship project and look forward to keeping in touch
Reblogged this on Communities Can 2012 and commented:
Prepare to be inspired by ‘hellraiser’ Alison:-)
Thanks Pam and brilliant to know that Alison has since come to meet you all and help spread these important message about true co-production in Wales!
So true. Reciprocity between equals is the only safe skeleton when you are building the flesh-and-blood of involvement/engagement/participation.
It’s hard to see yourself as equal when culture and systems say we aren’t. But enforced reciprocity is a good place to start!
Thank you Anne. “Enforced reciprocity” sounds a very interesting area to explore further… ? We certainly need to find ways to move away from ‘capturing stories’ as an end in itself rather than as part of the journey and as a path to co-design positive outcomes.
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Ally, thank you for writing this, Every word of it rings true. I’m currently researching for my PhD in the area of collaboration within psychiatry and what I’ve learned is that despite the rhetoric, what’s implicitly being said is “you can be ‘involved’ as long as you continue to know your place and recover on our terms.” I look forward to hearing more about how your involvement challenges this! Thank you.
Thank you, Ali. I posted your comment ““you can be ‘involved’ as long as you continue to know your place and recover on our terms.” on Twitter. It has sparked a conversation about the treatment of NHS staff who have mental health problems. Has there been any research about this important subject, I wonder?
As a starting point you might want to look at peer support literature. I’m a member of staff at a mental health trust, with a project manager role around supporting staff to incorporate peer support projects within their work. Most people who work in peer support have lived experience of mental health problems, myself included. I’m based within a psychological therapy team and with a remit that includes working directly with therapists. Would you believe that I’m currently recovering from the experience of receiving therapy by the same group of people that I work with?? My initial request to be treated by another trust was refused. If I’d been an inpatient I would have been treated externally, but this doesn’t apply to outpatients. Seems like one of the enduring features of a long-term mental health problem is enduring long-term battles with services – here we go again…..
Good to hear of Alison’s dedication to improving care amongst equals; medic and patient. Latter descriptions chosen carefully referring more to hospital environment than CMHS or home environment (with/without a carer/relative).
I comment as a carer 24/7 for family members; having visited a mental health hospital daily for several months; frightening for me let alone patients! Medication with depixol depots was “the solution”; hang the daily morning awakening nightmares! Talking therapy; what was that? Oh … and the kids while Dad in hospital; Social Services didn’t think this appropriate (for whom?) even supervised! Three years later now, on more even keel; discharged, living chez moi, Contact Order secured for kids, “failed ATOS!” but some self-employed £ work found, occasional minor relapses and low dose Sertraline for the other one with PTSD resulting from the overall trauma! Phew!!
Congratulations and THANKS for your efforts Alison (and with Gill’s support); keep up the good work to ensure a holistic and caring approach in helping 1 in 4 in the UK suffering from mental ill-health!
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Never been heard, never had a voice… Right now I just want a doctor to take this sadness I sink into whilst on my period seriously! It is hell! How am I supposed to cope with it? but I cannot visit a doctor again – as they put every single symptom… (The daily, constant scary physical symptoms etc) down to stress… They are stressful!
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How great of you to have shared your experiences in this way. I don’t always find time to read all of the Whose Shoes blogs though I know each one will have a valuable message as I too am a Gill Phillips fan.
I started my OT training and career having times where I was expected to work in mental health (20+ years ago) and have to say there were only a small handful of people I could understand how I was helping, with the way in which OT “treatment” was being provided. That’s probably because those few I was able to spend time talking with one to one but I was only 19 – 21 at the time. What did I know about life?
Your insights are so important re these invisible walls breaking because cultures become entrenched.
My experience is that listening – a really different kind of listening is so key to empowering people and allowing them to get a life.
It is a joy to hear you are finding a way to make that type of listening happen.
With much admiration Angie
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