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 who had undergone serious incident investigations in the NHS as a result of their deaths.
I am a parent of three young people. My eldest daughter, Katy, who had learning disabilities and physical disabilities, died at the age of 25 years, as a result of failures in health care that severely damaged her health and ultimately led to her premature death. My youngest also has severe learning disabilities, autism and epilepsy.
At first, I gave presentations that describe some of the experiences of families I had met through Oxfordshire Family Support Network. I had the privilege of getting to know Rosi Reed, via Twitter, who has become a part of the Making Families Count Team as I learned about her experience of losing her son, Nico.
Dr Sara Ryan, Connor’s mum, gave me permission to share her thoughts on developing the role of a family liaison officer to make these investigations less traumatic and to make families central to the investigation process.
I also wanted to highlight the serious health inequalities that exist for people with learning disabilities. Failure to understand and adapt to the needs of people with learning disabilities and autism can so easily be a major factor in them dying much too soon. It still shocks me to realise that people with learning disabilities lead much shorter lives than people without learning disabilities. The Confidential Enquiry into The Deaths of People with Learning Disabilities states:
“Thus men with learning disabilities died, on average, 13 years sooner than men in the general population, and women with learning disabilities died 20 years sooner than women in the general population. Overall, 22% were under the age of 50 when they died.”
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I remember an independent investigator saying to me that she was not aware of the massive disparity, until she heard my presentation at one event.
As the project has evolved and grown, I started to share my own story about my experiences with my daughter in acute hospital services. I felt, by sharing both the good and bad experiences I had had, it might help people who work in public services to think about how they might work differently with families to improve services. As a family, we were fortunate to work with a consultant who was extremely caring and who was open and honest with us about short-comings in the care we received. We felt he treated us as partners in trying to establish what went wrong and he worked hard to make changes. My aim is that other professionals will act similarly act with candour, honesty and transparency when things go wrong like our consultant, and crucially, will act on the things that are learned.
You can read Jan Sunman’s biography on our About Us page.