“I have to defend my girl”

Carolyn Cleveland

A guest blog by Carolyn Cleveland, Managing Director, C&C Empathy Training Ltd

So here was my emotional motivation: “I have to defend my girl – how will I ever stay sane if I don’t?”

I use this statement in my training and conference speaking concerning the Duty of Candour and serious patient safety issues. But it is a specific part of the Duty of Candour that I work on with Trusts: ‘preventing prolonged psychological harm’. This is an issue that is very close to my heart; in fact, it is embedded in my very core, both professionally and personally.

At 22, I supported a loved four-year-old little girl who had the traumatic task of saying goodbye to her mum as she died from a delayed diagnosis of cancer. That child, who I loved as a daughter, was then placed in my care and I continued her upbringing.

Helping her to manage her grief was enough to alert me of the need to prevent psychological harm. My academic study – in counselling, specialising in bereavement, the need for empathy and the massive benefits to wellbeing when someone is heard, understood and validated (a universal need I believe, crossing gender, race and culture) – embedded this further.

I brought up this child for a further 11 years and she became a daughter to me and big sister to my three subsequent children. And then I had to watch her die in hospital from a non-fatal illness.

This alone would be enough to unbalance the strongest of psychological states. But I was then faced with a system totally lacking in empathy, openness and candour, which failed to prevent prolonged psychological harm. This not only had the capacity to destroy my sanity, but to permeate its way through me and my entire family for years to come.

So, you now have a snap shot of my history, and it is just a snapshot, but what can you deduce from those few lines? Can you imagine what my emotional experience was? Can you draw on similar emotions of love, frustration, loss or fear to start to feel a little of what I may have felt to give you some accuracy? Can you start to feel a drive to respond appropriately? What emotional reactions have been evoked in you?

All components of reasoned empathy and emotional awareness, that can humanise necessary procedures, but procedures that if used alone, can be damaging and dangerous to immediate and long term wellbeing.

In my training course: A Journey Through Complaints Using Empathy, I do just what I claim. I take people on a journey. One that starts to unravel and evaluate some of the complex emotions that can be felt by patients and/or loved ones when something has gone wrong in hospital and someone has been seriously harmed or has died.

It can feel a little uncomfortable. But of course, it is uncomfortable when things go wrong, especially when someone dies. So, feeling that discomfort is actually part of empathising and knowing you are starting to understand at a much deeper level not only what happened, but the duty of care now needed for those involved.

The connection and trust that can be achieved by listening deeply to someone and treating their emotional experience and relationships with regard can be a very powerful attribute and skill to utilise. But also, being able to listen to the truth as that patient or loved one has experienced or witnessed gives you insight into information that, whilst not more important than other facts, is as important.

Having staff more confident in this, and setting the scene for this culture, not only improves accuracy of investigations – which is the whole point – but helps to prevent further psychological harm.

I wish I could say to health and legal professionals and leaders that when someone has lost a loved one and is left with many questions, that it never consumes you.

That when the busyness of the day is done, you never lay in bed at night feeling torment, guilt, anger and fear; emotions and thoughts that can swirl around your head before you go to sleep (if indeed you do sleep).

That you never feel that the person who was part of your life is now having decisions made about them by people who probably never even knew what they looked like.

I can’t say you never feel these things, because you do. I did, and many people I have spoken to having gone through similar do too. This is part of grief and your mind adjusting to the fact that something in your life has changed forever.

As a bereavement counsellor, I know intellectually the value of acknowledging these uncomfortable feelings. As a mum who lost a child, I know it emotionally. To act with total disregard for the vulnerability of someone’s psychological wellbeing is actively causing long-term harm. To communicate a lack of honesty and empathy, because communication is going on even through silence, adds further damage.

Patients and loved ones will have their own emotional motivation. Their ‘why?’ Mine was seeing a report with more omissions than fact. It was being told that they would not speak to the woman that they had previously referred to as mum during my girl’s stay in hospital because I was not the biological mum.  My emotional motivation became, ‘I have to defend my girl, how will I ever stay sane if I don’t.’

The Duty of Candour is something that needs to, and indeed must, be complied with. Charities such as AvMA can support Trusts and staff to understand their responsibilities through training that not only looks at the statutory legal side, but takes it beyond compliance, looking at best practice, through their years of experience within this field.

Journeying through a complaint or serious incident with empathy as Trust staff members do with me, empowers the psychological harm aspect to be understood in an authentic and thought provoking way, that puts the patient and bereaved family at the heart of the process.

It’s not just about lessons learnt when thing go wrong, it is about each individual case that is happening there and then. Making sure investigations are comprehensive, inclusive, transparent and caring. It is about people not leaving a complaints system more psychologically harmed than when they started.