A week of blogs “The film of our story”

I don’t want to write a great deal here. I want the film to do the talking.

But before you watch it I want explain the background of this film and why I’ve decided to show it in public now and include it in this week’s blog posts. The film was made by film maker Julian Hendy who runs the charity “A Hundred Families” and was made to be part of the training courses by “Making Families Count”, the new NHS Pilot scheme to train NHS Trusts around the UK to support families better after there’s a sudden and traumatic death in their care.

Nico’s death was traumatic. We are still traumatised. Had Southern Health handled his death differently we might be less traumatised – but they didn’t.

I was asked not to mention the name of the Trust in this film or the name of their CEO Katrina Percy, so the film would have more longevity and could still be used as part of the training programme in years to come; years after Katrina Percy has changed jobs or Southern Health ceased to exist in their current form. Maybe neither of those things will happen but by not mentioning them I also hope that more people watching this film are able to identify with our story.

When I first saw this film I was shocked. Since Nico’s death people had been saying things to me about my appearance, but I think they were trying to be gentle. I knew I had gained a lot of weight, but seeing this film for the first time made me realise how much. I knew I had stopped bothering about my hair and make-up and generally looking like a totally different version of my usual self.   Seeing this made me realise I was just going through the motions but I couldn’t really be bothered anymore. I’m trying harder now.

I’ve called this blog “The film of our story” but that’s not really true. This is just part of our story.

The whole story is that we had a son called Nico and we loved him very much. He died and it felt that no-one cared. On the anniversary of Nico’s death I can think of no more fitting tribute to him, our love for him and our need to fight on for justice in his name than to share this film with you.

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7 thoughts on “A week of blogs “The film of our story”

  1. That must have been so hard to make this film Rosi, but thank you for sharing. If I could take your pain away then I would in a second .Sending you hugs. x

  2. You were incredibly brave to enable this film to be made, but your clear, honest, unbelievably restrained telling is so powerful that nobody trained through it could be in any doubt of the cruelty and injustice of your treatment.

  3. the film you made is a generous contribution to ending families being left in terror and confusion after a sudden death and in seeking answers as to why and how .Disability makes a difference in life and equally in death and there is no point in glossing over the fact. Staff act differently in the same way people in general do. Small kindnesses and dignities to be performed by NHS staff can become required protocol . Perhaps sympathy messages from specialist nurses/other staff involved in a patient’s care over several years are a step too far but acknowledging a death has taken place in each and every communication must surely be a requirement. No out of the blue calls regarding returning this or that equipment. Families need support at home as well , having a disabled child doesn’t equate to your having the knowledge and skills of an ICU nurse/palliative care nurse, patient and parents should have standard or enhanced support offered. Rosi you spoke from the heart and gently, I am sure people will be willing to listen.

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