An upside down world
In the last year, the country has been turned on its head. Things which were once important are no longer a priority. People’s values have been honed, the world has shrunk, and everyone has gotten used to living in a different way. Whether it is wearing a face mask to pop into Sainsbury’s, infection control procedures at school or using that newfound lingo of social distancing, isolation and PPE. It seems everyone on the planet has had a glimpse of the transformation that occurs in the life of a family who loves someone with complex needs.
When my eldest son was born my life went off on a completely different trajectory – and not one I had chosen. Clinical jargon became a mother tongue. As a nurse, I knew the terms but now I was using them about my son – in our kitchen. Our world shrank to miles from the nearest medical establishment, and it was the professionals around us who controlled our world with their life-changing decisions.
Finding the gap
In those early months as a parent, I very quickly found a gap existed between the ‘parent’ me and the ‘nurse’ me. 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 different 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 I continue to recognise.
When I published my memoir, ‘The Skies I’m Under’, I was surprised by the response from professionals who simply said they had no idea what carers 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 appear to be physically opened to a different reality. No matter how much these stories throb with the heartbeat of our lives, they never quite give justice to the reality we live. However, after a recent course on ‘Communication and co-production with relatives and carers’, one delegate commented, “You have changed my viewpoint and practice from this moment forward.”
A complex web of practitioners
Practitioners might be an expert in their field, top of their game and the best in the business. However, the single most important thing for the parent juggling to care for someone with profound and multiple learning difficulties, 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, gleaning 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 and I’ve watched it unfold as my husband gives mouth to mouth to our son while I call 999.
Then comes the invasion. Initially, it’s in 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. But what all this leads 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 which all 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 last summer and worked out exactly how many people that included, I can tell you it is more than eighty practitioners, professionals, therapists, administrative staff and engineers.