‘Inspiring Stories’ with Heather Parsons

Patient and Public Involvement and Engagement Lead, Research. University Hospital Southampton

This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine. For this edition we have invited Heather Parsons from the UHS NHS Trust to share her story with us.

Delegates waiting to hear the keynote speaker at the launch of the Biomedical Research Centre could hardly have expected what followed.

In my work, we talk a lot about a patient’s ‘lived experience’. This was something else – a story about a patient whose life changed forever.

I remember how she walked up to the microphone, didn’t introduce herself and began to read a moving story about a woman who returned from an overseas holiday in 2002 with pains in her leg before collapsing and ending up in the Intensive Care Unit at Southampton General Hospital.

She was a Level-3 critically ill patient; this means she was essentially as ill as you could be. All of her life support functions were being supported; she was on dialysis, respiratory support and had a heart attack. Her family were told there was a low-percentage chance of her surviving.

Staff at the hospital said they had done everything medically they could do to save her, but the rest was now up to the patient – a single parent of a seven-year-old boy. If she didn’t start to fight, she wasn’t going to make it.

It’s hard to understand how anyone could come back from the brink in the manner she did. Perhaps the maternal instinct somehow triggered the thought that a little boy was waiting for his Mum to come home.

The road to recovery was long; the patient later said she felt she didn’t survive intensive care, because the person admitted to the ICU never came out – physically, mentally, and socially damaged in a way that could never be repaired or rehabilitated. Somehow, she became someone else with different strengths and qualities with an essence of the person she used to be.

It would be a remarkable ‘lived experience’ but the story doesn’t end there.

This patient was on a mission: she recognised a gap in the patient support network and worked tirelessly to support others who’d been critically ill. Alongside their families, she considered the burden on staff in critical care units who shouldered caring one-to-one with the patient and their family. She wondered how it felt to head home at the end of a shift not knowing whether someone will experience a positive outcome.

This story made her think more about the importance of research; how it enabled the hospital to save her life. The plastic surgeon knew how to graft and rebuild a leg destroyed by Necrotising fasciitis. Was the biggest gift the story of the life saved? The patient said surgeons gave a seven-year-old boy the greatest present of all – his mother. A family restored.

‘Lived experience’ isn’t about what research does in terms of science, it’s about the outcome for the public.

The experience of being nursed in critical care can lead to a high chance of developing post-traumatic stress disorder. This patient described finding herself in a very dark place in the middle of the night, pacing the floor and wondering whether life was worth continuing. But as a single parent, with a child upstairs needing her to take care of him, it was a huge moment of enlightenment. She felt cornered in a place where no medication in the world makes you feel better.

She considered that a common experience brings strength. If she felt this way, so must others. If it were possible to bring these people together, maybe they could help each other and grow stronger. She knew she didn’t want anyone to suffer in the way she had.

Tough decisions followed; she gave up her job, re-mortgaged the house and volunteered full-time on the Intensive Care Unit as a Family Liaison Officer. She repeatedly heard stories paralleling her ‘lived experience’ – much more than being a patient in an ICU. Being discharged is hugely significant, but going home is even greater. You may have family, but they may be traumatised too.

The former patient wanted to help others and retrained as a Positive Psychologist which looks at where you are in life and how you can flourish. Lots of work has been done around Post-Traumatic Growth which examines ways of moving forward following a major trauma.

Against all the odds, the former patient’s ‘lived experience’ has now brought her to a role which brings together people who have an unheard (or less-heard) story – people who assumptions may be made about. Does it match the professionals’ view of what the outcome of their care should be?

It’s wonderful to put together people with a ‘lived experience’ alongside clinicians, researchers and the commissioners who provide the services … and enable them to hear what it’s like to live every day with a health condition while facing the struggle to rebuild your life after a life-changing outcome.

That little boy is now 28 … and the ‘lived experience’ you’ve read is mine.

I am now on a mission to help others find their voice and to be heard. Their ‘lived experiences’ ultimately shape the healthcare of the future.

It feels very late in my life, but after an eventful journey I feel I’ve come home – this is where I was meant to be.

I’m incredibly proud to know all the people I know, and I have the privilege to work with such an amazing array of people from all walks of life. Someone once said, “if you do something you love, you’ll never work a day in your life”. That’s where I am now.

Stay Connected! To find out more about the ‘Inspiring Stories’ series, Faculty of Medicine educational programmes and research, or to get involved use the links below or contact Dr Lucy Green.

University staff or students click here for the Engaged Medicine SharePoint.

‘Inspiring Stories’ with Heather Parsons

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