In 2020, the world was turned upside down. Things once considered important no longer took priority. People’s values were honed, the world shrank, and everyone had to get used to living in a new way. The world got a glimpse of the transformation that occurs in the life of a family who loves someone with complex disabilities when life unexpectedly hurtles off on a completely different trajectory – and not one which was planned or chosen. Clinical jargon becomes a mother tongue. The world shrinks miles from the nearest medical establishment. Before long it feels as though the professionals around a family are the ones who control their world with their life-changing decisions.
Finding the gap to close this Co-production Week
When my son was born, my husband and I found ourselves transformed from healthcare professionals (GP and nurse) to ‘Dad’ and ‘Mum.’ The transition was instantaneous. The gap between each version of ourselves, however, felt vast. In the intensive care unit watching my son not breathe, I glanced fearfully at the monitors. I knew what they meant and silenced alarms when nurses didn’t come. I noticed how differently nurses spoke to my husband and I when they knew he was a doctor and I a nurse. It wasn’t so much that they used more medical jargon – although that did happen – it was the difference between being ‘spoken at’ and ‘worked with’. It is a pattern which has continued over the last eighteen years and why Co-production Week is now marked clearly on my calendar.
A different reality …
When I published my memoir, ‘The Skies I’m Under’, I was surprised by the response from professionals who said they had no idea what parents and caregivers go through behind closed doors. I guess it shouldn’t have been a surprise because before my son was born, I had no idea either.
When the stories of families land on the ears of practitioners, eyes and hearts can be opened to a different reality. And this impacts their perspective and their work. I try hard to depict our story and those of our peers so that the throbbing heartbeat of our lives can be heard. The training offered by Born at the Right Time always has three key ingredients;
- Lived experience
- What is going on underneath the surface from research and data
- How these things can inform actionable next steps for practitioners who want to work in collaboration and deliver personalised care
A recent delegate on our ‘Communication and co-production with relatives and carers’ training commented,
“You have changed my viewpoint and practice from this moment forward.”
A complex web of practitioners who have the potential to celebrate Co-production Week
Practitioners might be experts in their field, top of their game and the best in the business. However, the single most important thing for the parent juggling life to care for someone who has complex medical needs and/or disabilities, is the way those practitioners communicate and work with them.
In Born at the Right Time’s communication and co-production training, we use the term ‘vulnerability labyrinth’ to describe the early experience of parents of children with complex needs. It’s a way of defining what happens when a life-changing trauma occurs. Whether it is a diagnosis, accident or birth. Firstly, you find yourself in the eye of a storm with everything happening around you. The only option you have is to keep putting one foot in front of the other. You glean whispers of hope from the quiet words of professionals uttered in busy corridors. I’ve been part of that storm as a nurse in a resuscitation room. I’ve also watched it unfold as my husband gives mouth to mouth to our son while I call 999.
The imbalance of power …
Then comes the invasion. Initially, this might be the acute setting as medics rush around. But as the dust settles, in swoop the multi-disciplinary team with appointments, therapies and suggestions. It can even permeate as far as your neighbour’s hairdresser’s nephew, who read an article in the Daily Mail and has some really useful advice. What all this can lead to is a vulnerability labyrinth experienced by carers who no longer feel in control of their family’s lives. The vulnerability labyrinth is built on the language, systems and power imbalance of professionals and policies. All of these contribute to relatives and carers feeling powerless and isolated.
As a parent carer, I am placed at the centre of a network of professionals. Having sat down one day in 2020, I worked out exactly how many people that included. I can tell you it is more than eighty practitioners, professionals, therapists, administrative staff and engineers. Eighty!!!