On the 1st April 2013 I joined NHS England as the Lead for Experience of Care, focussing on Babies, Children, Young People and Maternity. I was challenged by trying to define what experience of care meant and if I’m honest I’m still challenged by it today. Getting relational care right ie ‘being with and for people at challenging times’, alongside creating straight forward functional processes ie ‘getting the admin stuff right’ in pleasant environments, along with ensuring competence of staff so that we ‘do the right stuff safely’, all make up our experiences in my view, compassion, competence and safety are inextricably linked.
One book I’ve returned to repeatedly is ‘Understanding Patient Experiences’ edited by Angela Coulter @acpatient and Louise Locock @LLocock amongst others. It’s well worth leafing through a copy at your library.
Of course the NICE Guidance on Adult Patient Experience (2012) https://www.nice.org.uk/guidance/cg138 offers an evidence based analysis and direction on this agenda and the National Quality Board (2015) published a ‘shared ambition’ of National Bodies to improve experiences https://webarchive.nationalarchives.gov.uk/20161103234108/https://www.england.nhs.uk/wp-content/uploads/2015/01/improving-experiences-of-care.pdf In 2018 NHS Improvement published the Patient Experience Improvement Framework https://improvement.nhs.uk/resources/patient-experience-improvement-framework/
All these resources are helpful but if I’m honest, quite wordy and they tend to focus on adult care rather than the experiences of children and young people. I needed someone to help me understand what good care, good experiences, looked and felt like. It was Adam Bojelian who helped me understand what mattered most to children. Adam tweeted and blogged using a blink technique (something I’m always in awe of) for me he nailed what a good patient experience is in his blog http://intheblinkofaneyepoemsbyadambojelian.blogspot.com/2013/04/what-does-good-care-look-like_2880.html
We used Adam’s work as we toured England running a series of events on Children and Young People’s Experiences of Care following the publication of the results of the CQC Children’s Survey (huge thanks to Ruth Evans and the Patient Experience Network for coordinating these http://patientexperiencenetwork.org/resources/reports/). Here’s a blog published by Picker Institute Europe @pickereurope with lots of examples of good practice to help us improve https://www.picker.org/news/blog/10-ways-to-build-quality-care-experiences-for-and-with-children-young-people-and-their-families-2/
Adam sadly died in March 2015, yet his legacy lives on and we continue to share his reflections and aim to live up to his standards of good care. Adam was celebrated by the Patient Experience Network as being an outstanding leader in Patient Experience, which he was indeed! See a short film of the celebrations that day in his memory http://patientexperiencenetwork.org/penna15presentations/ Thanks to Ruth Evans of @PEN_NEWS for recognising Adam’s contribution to #CYPExp work.
Each year Adam’s parents Dr Zoe and Paul who tweet as @4AdsthePoet host a lecture in his honour with support from @horizonleeds @NHSEmployers @NHSConfederation. I had the privilege of doing the first lecture discussing Children’s Participation in HealthCare, ‘Together we can do great things’ in 2016, followed by Rob Webster in 2017 whose lecture ‘Hidden in plain sight’ talked about families, carers and the complex system we as professionals create for people to navigate. Last year Dr Emily Harrop talked about the involvement of children, young people and families in the NICE End of Life Quality Standard. There’s more information on the lectures here http://intheblinkofaneyepoemsbyadambojelian.blogspot.com/
This year we heard from Dr Carmen Soto who tweets as @GourmetPenguin. Carmen’s PhD research focuses on the interaction between children, families and health services. Through conversations with patients and families, she came to deeply appreciate the complexity of the lives of children living with long-term conditions in the real world. Carmen proposes that healthcare professionals can live and work in a “bubble”, often oblivious of the impact that healthcare decisions have on children and their families. In the rich discussion that followed Paul, Adam’s Dad asked us as health professionals for honesty, open/growth mindsets and an ability to release control, Rob Webster challenged us to think about shifting the perspectives of ourselves and colleagues to build trust by establishing shared goals, recognising expertise and building relationships.
This tweet from Willow a parent who participated in Carmen’s research sums it up, the power of human connection and the impact of appreciating the complexities families face….
Adam’s lectures are always a lively gathering of Twitter friends, including John @johnwalsh88, Thines @ThinesG, Denise @denise123_cohen, Sharon @SAPHNAsharonOBE, Rob @NHS_RobW, Louca-Mai @Dr_LoucaMai, Amy @AmyFrounks et al and with many more joining in virtually such as Teresa @agencynurse and Sian @spencer_sian, Gill @whoseshoes thanks to the power of technology. We all meet with a common aim, remembering Adam whilst having an eye on the future, thinking what can we improve, what can we make even better with the people that we serve?
It seems fitting that my final day at NHS England is spent celebrating the contribution of a young man who was so influential on my time in this national role that I’ve had the privilege of doing. These words on a glass block are a little battered now but are often slipped in my pocket ….
Thank you Adam.
Thank you to Dr Zoe & Paul for continuing to share Adam with us all.