UK: The UK Sepsis Trust And ‘Starfish' A Powerful Story Of A Sepsis Survivor: Why Raising Awareness Is Key To Saving 14,000 Lives Each Year

Last Updated: 13 September 2016
Article by Mina Hinsch

This week I was privileged to attend a reception at Deloitte introducing a new feature film 'Starfish'i hosted together with the UK Sepsis Trust. The film is based on the experience of Tom Ray who survived sepsis. This week's blog features an article written by Dr Ron Daniels BEM, CEO of the UK Sepsis Trust and a global expert on sepsis, together with Tom Ray who recounts his first-hand experience of recovering from the devastating consequences of sepsis.

Sepsis, or blood poisoning, is the reaction to an infection in which the body attacks its own organs and tissues. The disease presents in a variety of ways, rendering diagnosis difficult (Box 1).

Box 1: Some of the symptoms of sepsis include:

Slurred speech or confusion

Extreme shivering or muscle pain

Passing no urine (in 18 hours or a day)

Severe breathlessness

'I know something's badly wrong with me'

Skin that is mottled, bluish or very pale

Source: Sepsis kills... but together we can beat it, The UK Sepsis Trust, 2016ii

If not spotted and treated quickly it can rapidly lead to organ failure and death. At the age of 38, after a lifetime of good health, Tom Ray contracted sepsis overnight. Both of his arms and both of his legs were amputated, and most of his face was removed. After five months in a coma, he woke to find that he had a new baby son. Sixteen years on, he is working as a motivational speaker, supported by his remarkably strong family support network.

This October, the UK Sepsis Trust is working with a number of film producers and distributors on the general release of a new feature film 'Starfish', which tells the tragic yet hugely uplifting story of Tom, his wife Nicola and their two children. Tom's experience shines a light on the urgent need to raise awareness of sepsis and improve the way our country handles it. Moreover, Tom's story stands as a reminder that every day in the UK, thousands of inspiring survivors continue to fight the battle against this devastating illness.

Tom's story

"Despite it all, I feel like the happiest man in the world. Sepsis cut me down in my prime. It tried to overwhelm and destroy me, but with the support and inspiration of my family I fought back, and I beat it. It's been the challenge of my life, but I have dealt with every setback, taken every small opportunity to make progress, and now I feel strong.

Waking from my coma in hospital, I couldn't remember who I was, and I didn't recognise my wife. My arms, my legs and my face had been amputated. I couldn't understand why. 'Sepsis', they said, a random killer infection that strikes without warning. I'd never heard of sepsis, but I soon learned that it affects over 150,000 people every year in the UK, resulting in some 44,000 fatalities.iii

44,000 deaths, every year! Imagine a Premiership football stadium, full of supporters, then every person there suddenly dying without any warning. Think about all the husbands, wives, partners and children that are left wondering why. Sepsis strikes like a wildfire in a forest, it changes lives and snatches them away in a matter of hours.

The condition can develop rapidly following even the mildest of infections, like a urinary tract infection or a sore throat. For reasons little understood, the body's immune system overreacts to the initial infection, attacking its own tissues and organs.

The real difficulty from a medical point of view is that the onset is hard to diagnose, with varying generalised symptoms including vomiting, high temperatures and body rashes. Sepsis will often strike at the point where the body's immune system is lowered for some reason. In my case, I'd recently had dental intervention, and it's possible that the infection was introduced then. But nurses, doctors and even Intensive Care consultants can easily miss the signs of sepsis. My early symptoms were reported to my GP and he disregarded them; when he saw me on return from hospital with my amputations, he broke down in tears.

I remained in hospital rehabilitation for seven months and over the next five years I underwent a long series of painful operations to reconstruct my face. I now have two robotic arms, myoelectric hands that grip and rotate and two false legs. My employer, the catalogue clothing company, Lands' End, helped me get back into the workplace, to develop new skills and to be involved with the world again. I will never forget that they gave me a chance to start afresh when no one else would look at me.

I work, I drive, I'm a grateful husband and a proud father. I go to the football on Saturdays. I've built a strong network of friends and supporters and I work actively to maintain a positive mind-set that places teamwork and compromise at the heart of all my activities. My wife Nicola (Nic) has saved my life on many occasions with her unstinting devotion. I owe everything I am to her. Every morning when I wake up, her smile greets me like sunshine.

I'm proud to have survived sepsis. I'm proud to have beaten it.

At the same time, with every week that passes, I'm reminded in the news that someone else has fallen victim. Often it's a child, like the two and a half year old little girl I heard about recently; five years on, her mother still can't look at her photograph. There are a thousand such instances of children who die from sepsis every year. And I recall the story of the middle aged mother of two young boys admitted to hospital with flu-like symptoms who died there from sepsis within twelve hours. Her husband's simple, dignified, words stick in my mind: "I feel lost." I think of the 78 year old 'Nana' who thought she was having an off day and went to bed to rest while her granddaughter went to Tesco to buy her some soup, but while she was away, Nana died alone of sepsis.

All these people, all these thousands of them, they are my people. We are connected. We stand and suffer together, we are weak and strong, and we are dying and living and remaining defiant together. Their memories are with me.

Making the film 'Starfish' has been a unique experience. It's very strange to have your own life portrayed on screen. I started out as an actor, so being on set and being involved with the production was a bit like finally going home after all these years. Sitting with Nic watching the premiere at the Edinburgh Film Festival, I realised just how unbelievably grateful I am to have beaten sepsis.

It has been the fight of my life. I did it for myself, for my beautiful wife and my amazing children. For every other single person affected by sepsis, the whole world over. And I'm glad I did."iv

Following my attendance at the reception and preview of the Starfish film I really do feel privileged to share this article by Dr Ron Daniels and Tom Ray in the hope that you might go and see the film for yourselves, and more importantly that, for the sake of Tom Ray and thousands of other sepsis patients, 'Starfish' really does help to raise awareness of this devastating disease.

However, raising awareness is only part of the solution. To identify the early stages of sepsis health professionals still rely on traditional diagnostic tests, which usually take time to provide results, time that sepsis patients don't have. In July 2016 the National Institute for Health and Care Excellence (NICE) published the guideline on sepsis recognition, diagnosis and early management.v The guideline recognises the importance of early assessment of and evidence for the diagnostic and prognostic value of blood markers and early monitoring information for sepsis. New point-of-care testing and digital monitoring of patient's biometrics are now made possible by advancements in digital health technology. These innovations enable sepsis patients to be diagnosed and treated earlier in both hospitals and homecare settings.

While these developments are too late for Tom and the many other people who have suffered from the consequences of undiagnosed or delayed diagnosis of sepsis they have the potential to transform the management of sepsis and reduce the risks for future patients. We will revisit this issue and the impact of new technology developments in a future blog.

Footnotes

i http://www.starfish.film/ , Twitter @StarfishTheFilm, www.facebook.com/starfishthefilm, #StarfishUKST

ii http://sepsistrust.org/wp-content/uploads/2015/08/Sepsis_DL-Leaflets_2014_New-RD-1.pdf

iii http://sepsistrust.org/

iv Tom Ray on Twitter @tomray99, e-mail: tomray99@aol.com

v https://www.nice.org.uk/guidance/ng51/evidence

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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