Friday, 14 June 2013

Two weeks, two conferences, lots of ideas, but one thing missing...

The whole 'pacing yourself' self-management malarkey is all well and good, until really interesting events start to appear in your diary.... Then it all seems to out the window and I go to two conferences in 8 days and physically pay the price. But it is a price worth paying, as I have been lucky enough to enjoy two fascinating and stimulating days, meeting a whole array of wonderful and inspiring people, although one key ingredient was missing...

On the 4th June, I was at the beautiful Cumberland Lodge for the Many Meanings of Quality in Healthcare Colloquium. Most of my notes from the day were words to look up in the dictionary and books/authors to read up on - it was very different to other events I had been to. With Iona Heath and Havi Carel I heard concepts of health and care I am familiar with explained in completely new ways using social theories and philosophical arguments. Heath's talk focused around the notion that the "human body is both an object and a subject". She questioned how we can measure the quality of healthcare, something that is combination of "judgement and human relationships". When we try to measure healthcare, she said we needed to go "beyond biometrics" otherwise we were at risk of "disciplining human difference." Her talk was brilliantly summed up by a new 1984 Orwellian phrase she coined: "disease is health". Her compelling arguments and perfect delivery made it an inspiring and rousing start to the day! Jocelyn Cornwall, Point of Care Foundation and Kings Fund, explored some of these points further in her key note speech in the afternoon, noting that there are "transactional and relational dimensions of care". Quality "is applied without the human aspects", since the transactional dimension is easy to measure, but the relational isn't. She questioned the language we use, quoting from a study where staff all had their own interpretations of what basic care, person-centred care, customer and personalised actually meant. Interestingly, many front line staff felt that 'person-centred care' was a term invented in the board room, not in hospital wards. Although the study didn't include patients and carers thoughts on these words (which makes it somewhat incomplete in my opinion) it does highlight how differently words can be interpreted and possible implications for providing "persons centred" or basic care.

I went to a workshop on 'Professionals and Patients: collaboration and communication in delivering quality health care' and we explored our ideas around truth and art. Dr Simon Cohn talked us through his recent work on developing trust practices. He had chosen to use the word "confess" when describing a patient updating their clinician on their condition. This sparked debate with "confess" for me and others in the audience conjuring up images of sinning, non-compliance - very negative connotations. Interestingly, Dr Cohn had intended it to symbolise a trusting and safe conversational space within patients can be open and honest with the doctor. Although to some, this may sounds like pedantic semantics, it brought up wider issues like trust. We often talk about patients having to trust their healthcare professionals but trust is very much a two way process. As more patients live with long term health conditions and embrace self-management, professionals need to trust patients to take as best care of themselves as they can, to make the best decisions in the days, weeks and months when they are not sitting across the table from a professional. The second part of the workshop focused on art as a way of prompting health conversations within communities, informally encouraging peer to peer support and de-medicalising the pubic health messages.

Personally for me the highlight of the day was listening to Havi Carel's lecture, 'It's got nothing to do with your lungs: epistemic injustice and epistemic virtue in healthcare'. Having just finished reading Illness, I am planning a whole post on her work and my reactions to it soon... I also had the wonderful opportunity to co-deliver a workshop with Toby and Cindy from FLACK on recovery and chronic illness, but that also will be a separate post in due course....

This was the first conference I have been to where Twitter has been used so much and so well. During the closing discussions of the day, Nathan Emmerich (@BioethicsUK) shared and talked through a Storify of the days tweets - a great idea and very effective way to recap all the key points from the day! It is always nice to meet Tweeps such as @amcunningham and @mellojonny in real life!

Guessed what was missing yet? No? Read on....

Having barely recovered from that I was off up to London to the College of Medicine Annual Conference, with the theme of self-care (although in my opinion this theme wasn't strongly reflected in the talks at all). Again, it was another opportunity to meet some great Tweeps in real life: @WhoseShoes@allyc375@NHSSimple; and @HVHForum

There was one talk that really inspired and gave me that spine tingling sensation (in a good way, very different to my normal tingling pins and needles!). Dr David Reilly, Director of The Healing Shift Enquiry, Consultant Physician at the NHS Centre for Integrative Care in Glasgow, had my undivided attention for 30 minutes when he talked about the healing shift and self-gardening. 
He described our "map", and routine of an "expert coming along and deciding an intervention." With a slide listing all the anti- medications (anti-depressants, anti-hypertensives, anti-emetics....), he made the point that doctors are "trained to see brokenness". He said that we need to move off the map so that "experts ask what they can do to help instead".
In moving away from seeing "brokenness" Reilly said we needed to embrace "an age of enablement" and look at "how we can release capacity in a self-sustaining manner". This "isn't just old map better, but a fundamental shift, the healing shift
He called for a "multi language enquiry" into the study of wellness and recovery, that included history, psychology, spirituality, (and I hope stories and experiences, the language of patients!).
It was wonderfully refreshing to hear and deeply inspiring. His passion for what he believed in around personal growth and healing was very clear and undeniably infectious. 

The Green Dreams Project, explained during a workshop, was a wonderful example of a GP looking beyond the symptoms of disease, recognising the non-clinical social and psychological causes, and embracing community development to address them.  

I also attended the workshop on patient leaders run by the brilliant Mark Dougerty and David Gilbert from Centre for Patient Leadership. Although the concepts were not new to me, having been lucky enough to be involved with Mark and David before, it was a pleasure to see their passion for the concept of patient leaders as they presented the workshop. It was also interesting to hear other people's reactions to their work. Hearing them talk about patient leaders, as a way of life, of a new identity, and being at one with their condition made me feel very proud and privileged to be involved with this movement. I would recommend the #patientleader Twitter chats on Tuesdays (8-9pm) run by @PatientLeaders

I was able to attend the conference because I had been awarded the College of Medicine individual award for Self-Care! I just about managed to survive until the award was presented to me after the dinner - I think all the adrenaline and inspiration from the day kept me going! Altogether Better (on the left in the photo) won the group award - very well deserved!

Guessed the missing thing yet?

One thing that both these conferences were missing was a patient leader speaker. They were both dominated by professionals. I am not asking for all speakers to be patients, but to have at least one included in the line up would make conferences a far better opportunity for people to expand their thoughts and develop their work by raising the profile of patient leaders and patient involvement at a strategic and professional level. Erin Moore touches on this point in her recent 66 Roses blog, but I think we need to go one step beyond just inviting patients, and get them up on stage. 
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  1. BRAVA my dear!!! thank you so much for this extremely important,very well written piece and congrats on your award!!! well deserved!!! ...very hard to find a DR who will listen to what patients are saying at appointments, harder to find a DR who listens to patients to learn from them... we are after all the people living with these illnesses,diseases and conditions. many of us 24/7 for 20 years or more. sending us home with umbrella terms and long term treatments of symptoms until looking for the causes comes only after we can no longer endure the rigors of such intrusive tests is abominable. also,i feel insurance company HMO's (we have them in the U.S. anyway)do more harm than good to patients,thus wasting money spent on ineffective medications and treatments, while causing undo increased suffering,greater loss of quality of life,more disability,greater cost to patients,families and taxpayers, not to mention greater risk of many avoidable deaths should be federally outlawed !!!

    1. Thank you for your comment! Conferences are supposed be a chance to hear ideas you wouldn't normally hear - patients thoughts certainly fall under that category! We may not experts through medical qualifications and professional awards, but we are experts through experience ( which should be no less valid.
      Keep persevering - you have so many valuable lessons to teach!