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September 20, 2014 / angelavbolton

Best Interests at Heart

The room was full and the atmosphere was positive: people who were full of grief – possibly for a long time – gave off gentle waves of hope, and the pain lightened a little, and then a little more as each segment of the launch of the online resource on ‘Family Experiences of Vegetative and Minimally Conscious States’ was aired.

What was not understood by me in my ‘previous’ life – before Bob’s injury – is that when something as catastrophic as brain injury happens to someone you love, the only ones who can understand are those who’ve experienced losing a person in that way. No matter how much people want to empathise with one’s loss, they simply can’t, and it is not expected of them: ‘we’ know it’s a hole in your heart: not like a death of a loved one, because it goes on for a lot longer than that, and has so many different ramifications for the people trying to deal with it.

But in this room in Putney, London, on the 17th of September 2014, most everyone had suffered the same kind of loss in some form or another, and the empathy was unforced, everyone wanted to be a part of a healing process – that’s why we were there.

The welcome and introduction by Celia Kitzinger was warm – having met her for the first time earlier that day (although we’d spoken by ‘phone), I could tell she was like her sister Jenny Kitzinger who did my interview (they are Co-Directors of the Chronic Disorders of Consciousness Research Centre): both women sincere and purely motivated, and very kind. I’m mad about the two of them! (And Tess, their other sister, who gave me a gorgeous big hug).

This was followed by an humorous and rather charming short address by Lord Stone of Blackheath, when he expressed heartfelt admiration for the work done to bring these stories online.
We learned about the charity funding the online resource –DiPex, who publish two websites – and then Celia and Jenny introduced the website and it’s various components.

I had watched as many interviews as I could – sat for three hours one day, listening to these amazing people voicing so much of what I feel in my heart– and was moved and humbled by their stories. Of course, I had to watch my own interview to see what I had said… that wasn’t fun! (think I forgot about being videoed, and was crying, blowing my nose, using the ‘venacular’, rolling my eyes – typical).

Luke Griggs from Headway then spoke, saying that the resource is an invaluable aid to those who are seeking support and advice; this viewpoint underlined then by Professor David Menon, who explained how difficult it can be for clinicians to know what ‘the right thing’ might be in cases of cardiac arrest, for instance; how hard to know truly what the family wants; and that this online resource is imperative, as medical practitioners can hear directly from the people most affected.
The atmosphere by now in the room was brilliant, that’s the only word. There were slides being shown and there was some banter and teasing, but everyone seemed focused on what we were there for, and it was comforting.

Consultant in Rehabilitation Medicine at King’s College London, Lynne Turner-Stokes, then took the floor – unfortunately I couldn’t hear her very well but the rest of the audience responded with applause; and eminent expert Professor Derick Wade of Oxford spoke briefly on his feelings about the resource. I met Professor Wade two or more years ago and my esteem for him is absolute. He is due my gratitude in no small way for the advice and time he gave me.

To close the presentation, Gunars Libeks and his partner Margaret Kellas – both on the panel and obviously hard-working contributors in all aspects of this resource – talked movingly of their experiences within the emotional turmoil that follows such a loss, and how communication and information can truly help a family cope with tragedy of this kind.

Postcards were displayed at the end of the room; things written as either advice to one’s self at the time of the happening, or an idea for medical professionals to take on board, and most of us read them before heading downstairs where there was wine and canapes for our delectation.
There I met Alison who had done Bob’s SMART Assessment two years ago. What a pleasure it was to see her lovely face and catch up. I also met Phil, whose interview so impressed me. It was some afternoon – seeing people you’d seen on video and them meeting them, and our shared experiences, some funny stories… just terrific.

Wanting a smoke and seeing only one ashtray, I asked the gentlemen at the table if I may use it? Told me they were part of a Men’s Club and weren’t associated with the launch at all. They looked at me a bit askance, and I said ‘well, you’ve got the only ashtray!’, so they squinted at me a bit, and then started slagging me about being Irish! I was well able for them and we bade a genial goodbye in the end.

Celia and Jenny kindly invited me to join them and others for dinner that evening, which they hosted in a tiny (and delicious) Lebanese restaurant. Bursts of laughter from the table lightened my heart, and I thought: how resilient is man! The sense of comraderie was still evident, and continued until I returned home the next day.

I’d love to be able to convey more of what came out of these months and years of hard work by all of involved; their commitment to opening more channels of communication, building bridges between medics and families, but the overwhelming sense was of ‘Best Interests’, not just for the patients but their advocates, and that’s too huge a concept to convey.

Please watch these interviews, and read the stories, and leave your comments if you can. Please pass it on to others – no-one ever knows when they might need just that help, although I wish no-one ever did.


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