This is the second of a series of blogs in which the members of Making Families Count write about their personal journey and why working with MFC means so much to them
ROSI REED (Administrator – Making Families Count)
I’m proud of working for Making Families Count but the price I’ve paid to do this work was very, very high.
Looking back to my early life it would seem to be unlikely that I’d end up working with a company like MFC. I left school at 16 with no qualifications, no ambitions and no plans. Not long after I had my lovely daughter and a few years after that, I met my current partner and we had a son together. That son was my wonderful Nico.
It’s often assumed that having a disabled child is a sad, pitiable thing. It makes your life hard and it’s a tragedy for the child and while it’s true that it’s not always easy, your child is a person first, not just a disability and we thought Nico was marvellous. He was gorgeous, funny, warm-hearted and giving, fun loving and adventurous. We loved our life with Nico. We didn’t feel our family life was constrained by his cerebral palsy; it just didn’t occur to us that we couldn’t do everything he wanted to do.
The hardest part was dealing with those organisations that made life as difficult as possible. The various local authorities and social services we had to navigate which made us feel we were a nuisance and Nico, nothing more than a financial drain. Luckily he had no particular health issues and he attended the UKs flagship school for severely disabled young people from when he was 6 till he was 21. But then the wheels came off our life……..
It was called “Transition”. It’s when, almost overnight, your child is re-classified as an adult and everything that they were legally entitled to is swept away. A full, happy, healthy and fulfilling life is replaced with, if they’re lucky, the ability to simply be alive.
Nico wasn’t lucky. His great life was replaced by a half-life. His mental and physical health deteriorated. He longed to go back to his old life, to a place where he had a voice, friends, hobbies, work, learning and fun. We tried everything we could think of but now we were dealing with an NHS Trust we found we had no power, no pressure, no voice and nobody cared.
And then Nico died. Alone in the night and only a few feet away from the help he screamed for. Help that never came.
We were plunged into a dreadful world we were completely unable to navigate. A world of documents, solicitors, meetings, long words and acronyms I’d never heard of. A world that made me feel foolish, worthless and impotent. On top of this the grief was tearing me apart. Without our advocate and friend we wouldn’t have made it through the inquest and through the investigation.
In 2014 I was asked to take part in a discussion about how families are treated by healthcare providers after an unexpected death. Also taking part was Julie Kerry who was then looking for traumatically bereaved families to form a new style training group. She invited me to join this group and told me it was going to be called Making Families Count. At this point NHS England were funding the group for a year to deliver training at NHS Trusts based on our own experiences around how badly families were being treated by the NHS during investigations.
The Making Families Count secret weapon was Julian Hendy. Co-founder of the company with Julie Kerry, by profession he was an award winning documentary filmmaker who knew the value of a well-made film. The films that he made of our stories had such power – they took the staff in the room to another place and forced them to live through our experiences and emotions in a way they never had before.
The first Making Families Count training event was in Reading. It was an open event and many Trusts sent staff. I found it overwhelming; I sat at the back of the room and didn’t speak. As part of the event they showed my film and I was amazed to see people around me breaking down in tears as they watched it.
It was as if someone had flicked a light on in my head. The ideas the other speakers shared were my ultimate light-bulb moment. I suppose I knew even then that this was going to be the rest of my life and that light, that passion, has never dimmed in me.
It’s very common for families to want to do some type of campaigning work after a traumatic bereavement. Some do it in memory of the person they have lost and many do it in the hope that another family won’t have to go through what they have endured. At Making Families Count we take that to another level, with training courses to take your mind and heart in a new direction and then give you the skills and tools to do that new work with.
Sometimes it takes terrible events for you to become the person you were always meant to be. I love my work but I can’t help but wish it was possible for me to have my work, but have my son as well.
You can read Rosi Reed’s biography on our page “Who we are”