Originally published by Horizons – 19th April 2018
EdgeTalks invited Hilary Garratt (@HilaryGarratt) to share her personal story and to share the lessons she has learned about compassionate care. Hilary Garratt is the Director of Nursing in NHS England and Deputy Chief Nursing Officer for England. She is a Registered Nurse and Health Visitor with over 30 years’ experience of working in clinical, public health and leadership roles in the NHS. She shared that about this time last year, she was told that she had cancer. Hilary explained that for the first time she realised that she had hardly ever used the NHS, even though she had worked within it for such a significant time. It was like entering a different world with new rules, ideas, behaviours and rituals.
What strikes me, again and again, is the power of storytelling to connect people around improving health and care. Hilary shared her story sensitively, reaching out to people on the call who could have a similar experience. She raised the issue that there are over 58,000 people diagnosed with breast cancer each year which includes a 1000 men. That means that someone we work with or are close too could well be affected. We all have ‘back stories’ as Hilary puts it – and sometimes that sense of empathy goes beyond what is taught in the classroom to a deeper place of the lived experience.
Thinking about the dynamic between cure and care, Hilary’s reflections throughout the whole experience was that 80% of experience related to care and 20% was related to curative intervention. Hilary felt that it is important to understand the memorable care moments that made a difference to her experience in hospital. We all know the human touch is so important to care – when the time is taken from busy schedules to patiently explain a cancer condition and what treatments are available. ‘Cure’ is equally important and the 20% medical intervention for Hilary has kept her alive. This prompted us all to think about what the future will look like. With the expansion of a more digital medical world, what will happen to care and compassion? Hilary describes this as the care versus cure dynamic that is now shifting policy and shaping behaviours and attitudes towards care.
Hilary knew through her work that 30% of people with her type of cancer do not benefit from chemotherapy. Hilary was scheduled for chemo as per NICE guidelines. She knew that there was a genomic test available in the USA and paid to get the test done. Genomic testing is a type of medical test that identifies changes in chromosomes, genes, or proteins and specific responses to treatments. The results indeed demonstrated that Hilary was one of the 30% that would not benefit from chemo. On reflection, Hilary recounts the shift in the conversation with her surgeon and the specialist nurse when the issue of who pays for the treatment was introduced. This led her to think about how do you have conversations about the cost (and I would add value) of care. We need to really listen to what the patient is telling us even when it goes against national guidelines or what we have been taught to say or respond. Does patient choice become compromised as discussions on the cost of care become more prevalent? Having a plan to deal with the unexpected is one of the key learning points. How prepared are we for what this might mean for a key principle in the NHS – free at the point of use? We also need to start thinking of the skills required for that combined automated and digital world too. The conversation on cost becomes part of a wider narrative in the public sector and people seem to be more aware of the need to achieve efficiencies through cost saving.
The next question on how in a digital and automated world do we maintain environments of compassion highlighted the importance of care to people, regardless of how IT savvy they are. People on the call referred to the importance of expressing empathy, and how we all look out for facial expressions and body language to determine if there is genuine compassion. As one person commented in the session: “even the young generation of today who are very digitally active appreciate the personal face to face compassion”.
The learning does not stop as a patient, because as a member of staff Hilary believes she has a responsibility to think and apply her insights. This is where the question of ‘how do we create good environments of care and rituals that have significance in other environments’ came from.
She is now more tuned into how her staff feels and she is committed to their health and wellbeing. She sets her own health and wellbeing targets and shares this with her team who are encouraged to do likewise. Generating a good life to work balance is not optional. The EdgeTalk discussion featured comments about nurses who often feel tired and run down working on the front line. If we were to promote a stronger life to work balance this would have a positive impact on patients. Makes sense!
Another challenging question from Hilary’s reflections over the last few months is how to create environments of care. So much knowledge and expertise are shared in reception and waiting rooms, being the place where we spend significant time whilst receiving treatment. Patients use this social space to share their stories, to support each other and to share who is the best consultant. This is also an emotional space where people laugh, shed tears or choose to sit in silence. Hilary’s picture shows her ringing a bell – a ritual in cancer treatment for when you complete a major part of your cancer treatment. It is very powerful as a way to create a shared way of celebrating important milestones in a public way. What is the lesson here? Can we create experiences in our work context to help solidify key memories, move us into a different space, and to reflect on the important point that we are all in this together.
Thanks for sharing your story, Hilary.