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Working in a job that aims to improve experience of care for people who use health services there are often times when my work crosses over with my personal experiences and that can be tough.

A conversation, a thought, an encounter with a patient or carer can evoke feelings of loss and grief that are only just under the surface.

This week I was involved in conversations about story telling an obvious connection to telling Seth’s Story. The story of our experiences in the 33 short and heart-breaking days that elapsed from his diagnosis to his death.

This collided with an experience I had a few weeks ago when I went on a visit to a hospital and I was asked if I would talk to some nurse leaders about patient experience, it was a last-minute thing, I was unprepared, so I decided to talk about Seth’s Story.

It was an interesting session as I decided to read one of the letters which I wrote six months after Seth died. It was a letter that described the care that two different nurses gave to Seth a few days before his death.

It started

“Today I experienced the polar opposite ends of person centred care from both of you.   One nurse cared, was compassionate and had my best interests at heart and one nurse was so preoccupied with the rules, procedures and protocols so much so that me the living breathing human being was lost in my disease and the sheer weight of the NHS systems and processes”

After I had read the letter I told them it was a letter shared with me by a lady whose husband had died and I asked them for comments and thoughts. There were many comments, explaining that nurses were under pressure, that they couldn’t always do what a patient wanted because it might be contrary to the procedures they had to work to, there were safety considerations, people sometimes asked too much of nurses.

There was one lady a natural leader who challenged to the group about role modelling, about really listening to the patient and supporting what is important to them. The discussion went on for 20 minutes to and fro, but a general feeling that nurses couldn’t do everything, even when the patient was approaching the end of their life.

Then I started to explain a little more about the story, I told them that the person in the letter was called Seth and he was married and aged 49 when he died from late stage pancreatic cancer. I told them that on Monday 12 May Seth had left work at 4.30pm he went to the GP and then he was referred to A and E. By 4.30pm on Tuesday 13 May he was told he had late stage pancreatic cancer and he had days maybe weeks to live.

Then I told them that he died 33 days later, there was a little gasp in the room and then I told them that Seth was my husband, the little gasp was heard again.

It was an interesting reaction; the mood changed the denials, the excuses, faded away and the ownership of the experience was different. It was an interesting afternoon and an interesting reaction, which clearly showed the impact of personal connection.

So, this leadership session, combined with the conversations about end of life care, has bought Seth’s and my experience of care right to the forefront of my mind, in crystal clarity and with that comes the inevitable unsettling upsurge of raw emotion associated with grief.

My grief lives just under the surface of everyday life but regularly it surges forward and consumes me.

I wrote those letters five and half years ago, I wrote them because I wanted the people involved in Seth’s care to understand the heartache, the injustice, the hurt and the life changing impact of a lack of support, control and choice at the end of Seth’s life. I wrote them because I felt like I had to get justice for Seth ……justice because I felt like I let him down and that the system let us both down.

I shared them in Seth’s name to inspire better care for others.

It’s made me reflect on the storytelling conversation I had this week. The power of stories is obvious, but the story has more power when it is delivered by a person with lived experience.

If you are sharing experience of care stories please support the person with the lived experience to deliver the story, its more intimate, it’s more impactful, it invokes ownership, compassion and motivation in the people who are listening, watching, reacting and responding.

The last words are from the letter, imagine these words being spoken by 49-year-old man, whose life turned upside down and inside out in the course of twenty four short hours in May 2014.

A man who faced his untimely death with grace, courage and selflessness.

A kind, curious, funny man called Seth Goodburn.

The last word comes from Seth via the letter that I shared

“Nurse Jones made me feel inadequate, vulnerable and ignored; …. 

Nurse Smith made me feel valued, important and cared for. 

When you or one of your close family are approaching the end of your life which nurse
would you prefer to be on duty ?

You have the chance to think about what to say and do; how to respond and act and to think about how your actions and words might affect someone who is dying. You can also reflect on the lasting effect that your behaviours, compassion and attitude might have someone’s experience of losing the one person who means the most in the whole world to them. I will only die once and in the time leading up to my death, my care must be person centred and compassionate.

Someone once said that “Care is a freely given gift of the heart” and this is mine to you…

Please reflect on my story, think about me and this letter when you are looking after your next patient approaching the end of their life.

Care is “a freely given gift of the heart” it really does make all the difference.”