Getting involved: contributing lived experience to research

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I applied to join the Learning from Deaths: Learning and Action research Public and Relatives Steering Group in the hope that our family’s dreadful experience might be put to some good use. We don’t want other families to have to go through what we have suffered. I also knew that meeting other people who’d had harrowing experiences might be helpful to me because it might reduce my sense of isolation. The Steering Group was set up by the main researcher on the project, Dr Zoe Brummell, Anaesthetic and Intensive Care Trainee at University College London NHS Trust. The aim of …

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Inquest – a family’s perspective

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My much loved daughter in law Mariana Pinto died, aged 32, on 16 October 2016.  The Coroner, issued a narrative verdict at the end of the inquest, on 13 March 2017:   “Mariana Pinto died on Sunday, 16 October 2016, when she stepped over the balcony of her home, fell from the third floor, and after some minutes rolled off the glass roof on which she had landed to the ground below. Her actions were deliberate, but she did not have the understanding necessary to categorise these as suicide.  She was in a confused state with features of psychosis.  This was …

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Using positive engagement to fill in the gaps

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Last week I met a lovely young woman whose brother had died from a brain tumour 10 months earlier.  She felt that she could tell me about this because I met her in a work capacity and she had already listened to me talking about grief and my own struggles to find a way through traumatic bereavement. As we talked, she opened up a bit more and started telling me how she was feeling.  I haven’t been able to get the conversation out of my head and the more I thought about it, the more I felt the need to …

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Family knowledge in a mental health crisis: Dorit Braun

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I’ve had a few experiences of a loved one having some kind of breakdown or mental health crisis. What I have learnt is that the process of assessing a person in crisis takes very little, if any, account of the knowledge of the person’s loved ones/family/carers. The mental health crises that I have witnessed involved a person losing their mind and becoming psychotic. If you read about psychosis from people who have experienced it and survived, it is clearly absolutely terrifying. It can feel to them like everything in the world is directed at them – e.g. the TV speaks …

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Navigating – an advocacy story

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Trying to do a good job when you’re not completely sure of what you’re doing is difficult and can be very stressful. I think it happens to all of us. Most of us navigate our way through this by turning to a colleague and saying “I’m not sure how to do this, can you help?” and that support makes a huge difference to your stress levels and your ability to do the job well. But what if there is no-one to ask? What if there is no one you to turn to? Through MFC I’ve met many family members who’ve suffered a traumatic …

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The importance of difficult conversations

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Last week I was speaking at a healthcare conference in London run by HC-UK. The majority of delegates were senior clinicians and management from NHS Trusts and private healthcare providers. At the end of my presentation, I asked for questions. There were some very good questions (some of which I’ll come back to in future blogs) and one that stood out for me was a question from a clinician who heads up an NHS Trust team. He asked, “how do I deal with the problem of my staff not knowing how to have difficult conversations with families after a serious incident?” I asked him …

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“Misguided and Dangerous”

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It was announced on Wednesday 17 July that the NHS has decided to stop funding the automatic investigation of all killings by mental health patients. This announcement took many people totally by surprise, and in the case of families bereaved by mental health homicide, shock and horror.  Making Families Count member and founder of the influential charity Hundred Families, Julian Hendy is quoted in the Guardian article which blew the lid on this astounding decision by NHS England.  You can read the article in full here: Cuts to study of killings by mental health patients ‘put people at risk’ In response …

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Getting to know Making Families Count – Jan Sunman

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This is the third 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.  This blog features MFC Director Jan Sunman. I became involved with Making Families Count, after the death of Connor Sparrowhawk who died whilst in the care of Southern Health Foundation Trust. I was invited to join the team by Julie Kerry, (then lead investigator at NHS England South for the Thames Valley area). Julie brought together a group of families with experiences of having lost loved ones and …

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Making an impression at the Patient Safety Congress

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This time last week I was at the Patient Safety Congress in Manchester. I had an excellent time and met so many interesting and impressive people. It was also an opportunity to do a lot of networking (which is always so valuable) and meet up with people I’ve worked with in the past and now seldom see. It was an impressive event. Really well run, really well organised and incredibly well attended. There were over 1000 participants and almost 450 delegates, presenters and speakers. Over 2 days I went to a hugely varied number of presentations and talks and while some of …

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