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

silhouette of a man holding a syringe in his mouth to give medication via the tube inserted in a boy who is in a wheelchair.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.

This Youtube clip depicts exactly why I firmly believe that training practitioners in communicating and working well with families is the single most powerful training they can experience. Every single practitioner who sees a parent differently, creates a more positive connection and wants to really hear the family’s priorities and perspective, and does so with the numerous families they work with.

Bridging the gap

Communication and co-production training acknowledges the vast network of already established relationships and focuses on strengthening and oiling each one with connection and collaboration. Making that network of people work well with families of people with complex needs makes a difference to their lives every day – several times a day. Imagine the impact if every time a parent picked up the phone, read an email or spoke to a professional and felt that they had been heard and respected.

Imagine if we all acted like we were on the same team

And the same is true vice versa. Communication is a two-way street which is why Born at the Right Time’ provides professional training and parent workshops. We believe through helping parents understand their own story and emotional landscape, they can better learn how to connect with themselves and others – including professionals.

A change in narrative, culture and language is needed. Talk of the incessant fighting carers need to do or the necessity to be a ‘warrior parent’ needs to become redundant language. The time and energy spent on driving stakes in the ground, handling conflicts and going to tribunals, could instead be spent working together to bring about the best kind of life for people with complex needs. There needs to be a shift away from us and them.

In every walk of life, we are tempted to present a single version of ourselves. Professionals only see a snapshot of the lives of families of people with profound and multiple learning disabilities. Stepping back and seeing the full story of those who love people with complex needs is a deep dive under the surface of the iceberg. ‘Born at the Right Time’ training goes further though; by using research and best practice it equips practitioners with the strategies and practical steps to work with rather than for families. It is the magical combination of people’s stories and research data which has the potential to drive life-giving, transformational change.

Find out more about Born at the Right Time training on our training page, book a ticket through Eventbrite or email for more information.

Article originally published

Wright, R (2021) PMLD Link Vol 33 (1) Issue 98