We need a new kind of ‘ordinary’

This has been a dark week. A man with Down’s Syndrome was considered not worthy to be resuscitated by a hospital (East Kent Hospitals University NHS Foundation Trust), purely because of his learning disability.  The doctor concerned has not been fired: he has had half a day’s training.

Then an NHS audit of Southern Health, responsible through negligence for the unnecessary death of Connor Sparrowhawk who drowned during an supervised bath despite his regular epileptic seizures, found that the Trust routinely failed to investigate unexpected deaths of people in their ‘care’, particularly if they had a learning disability or were older. The implication was clear: the professionals and managers involved saw untimely deaths as normal and the lives lost as unimportant. Their first reaction to Connor’s death was to worry about his mother contacting the media and how they should ‘shape’ any media response. At the time of writing senior managers remain in post.

This and a dozen other well publicised tragedies in NHS care (who knows how many hundreds or thousands will remain unnoticed and unknown?) make the conclusion inescapable that medical establishments are not currently capable of becoming consistently safe and happy places for people to live good lives. This sounds so obvious that it seems ridiculous to type it, but despite Connor’s death, Winterbourne View and all the others stretching back to the Mansell reports which started 25 years ago, we still do not act as if medical institutions and good, ordinary lives are incompatible. We are only just starting to replace the language of ‘improvement programmes’ with closure programmes.

As long as large numbers of people are housed away from those who love them for extended periods, in the charge of people who have no way of getting to know them as anything other than ‘patients’, these failures and in some cases, crimes, will persist and some senior managers will worry more about reputational damage than accountability, learning and compassion. The current state of affairs is pervasive and entrenched but it is not ‘normal’. This blog by Helen Duff on Belinda Schwehr’s site charts her changing view of what is ‘ordinary’ in the care world, through her involvement with a Shared Lives scheme. Read it alongside those news reports and perhaps feel more angry, and more hopeful:
“As I started to learn more about the people who work as Shared Lives carers, and the people who live with them, I also started to hear questions from professionals. I remember one in particular: “aren’t you creating dependency by encouraging people to forge deep relationships with their carers?” Shared Lives carers care deeply about and, dare I say it, often love the people they support. Only recently I spent time speaking to a tearful grieving carer who had spent in excess of 20 years caring for someone who had recently died. She had lost a member of her family and she felt this as acutely as anyone else, regardless of her ‘paid carer’ status.

I started to think about the people who make my life fulfilling; my friends and my family. Am I ‘dependent’ on them? Well I guess yes, in a way I think I am. But does that mean I should protect myself from all hurt, and hold back? Is it better to have loved and lost than not ever to have loved at all? Yes, relationships break down, and it hurts – really hurts. But does that mean I should stop forging relationships that might inevitably cause me heartache?

This led me to think about a wonderful story that shouldn’t even be a wonderful story – we recently celebrated a couple getting married within Shared Lives.” Read the rest at http://www.schwehroncare.co.uk/a-celebration-of-ordinary/

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3 thoughts on “We need a new kind of ‘ordinary’

  1. RJ December 11, 2015 / 3:36 pm

    Nearly 31 years ago when my newborn child was found to have a complete bowel blockage the surgeon made a special visit to me just to ask this question ;
    “Are you sure you want me to operate ? You do know the child has Down’s Syndrome and will live if I do ….!

    It’s a long term issue and it isn’t any better now than 31 years ago …

    • Alex Fox December 11, 2015 / 6:54 pm

      Thank you for sharing that important – and heartbreaking – point. Alex

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