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Sepsis survivor warns of pressures preventing nurses from acting fast

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The extreme pressure on nursing and other NHS staff is making it harder for them to act quickly to prevent life-threatening sepsis, according to one survivor who lost all his limbs to the condition.

Tom Ray had his lower arms and lower legs amputated and also suffered severe damage to his face, after contracting sepsis in 1999 as a result of a small cut to his mouth during a trip to the dentist.

“I was left for 12 hours without treatment and by the end of that period my whole body had turned black”

Tom Ray

His story has since been made into a powerful film – Starfish – and together with his wife Nicola he has teamed up with the Sepsis Trust in an effort to boost awareness of the condition, which strikes about 150,000 people in the UK each year and claims 44,000 lives.

While knowledge of sepsis has “definitely improved” in the years since he was taken ill, Mr Ray told Nursing Times one of his biggest concerns was that NHS staff were not always able to take the swift action required to halt it in its tracks because of staffing shortages and funding cuts.

“The Sepsis Trust has done amazing work to bring it to the fore and you see it more and more in the media now in terms of news stories and even snuck into dramas like Holby City and Casualty,” he said.

“But there’s a real problem beyond just disseminating the information and making people well aware of it and that is in the ability nurses and other clinicians to react quickly,” he said. “We’re talking about a car crash here. I was left for 12 hours without treatment and by the end of that period my whole body had turned black. My hands and feet went black and then died.

Starfish/Sepsis Trust

Sepsis

Still from the film Starfish

“If that treatment isn’t given within that six- to 12-hour window you’re looking at amputation or death,” he said.

“But the ability of nurses and other clinicians, doctors and consultants to react is obviously hampered by conditions in A&E, cuts and everything that we know is going on in the NHS,” he said.

“Nurses are under so much pressure and whether or not they can intervene and react that quickly, I don’t know,” he added.

Mr Ray said he was motivated to work on the independent British film, which stars Tom Riley – best known for the TV show Da Vinci’s Demons – and Downton Abbey actress Joanne Froggatt, because he wanted to ensure other families did not have to go through the same ordeal.

“When I was in hospital the doctors gave me the impression that I was a one off – that this thing that had happened to me, which they called pneumococcal septicaemia in those days – didn’t happen to anybody and that’s why they weren’t able to spot the signs and symptoms,” he said.

Starfish/Sepsis Trust

Sepsis

Still from the film Starfish

“It turns out it is actually one of the most common causes of major illness prevalent in hospitals today,” he said. “When I was asked whether I would like to turn my story into a movie I thought ‘yes I would, because this needs to be exposed’.”

He added: “If I can save one person from having to go through all that I went through then that is worth any amount of work.”

Mr Ray, who is from Rutland in the East Midlands, described watching the film about his story as a “strange experience”.

“It tells the story of my life and goes into some detail about the biggest thing that ever happened to me, so it is a mixture of pride and surprise that anyone is that interested in me,” he told Nursing Times.

“It’s so strange, because I really am an ordinary fellow, but something extraordinary happened to me,” he said. “I’m also very pleased that it turned out to be such a moving, powerful, well-produced film.”

The film – which is now available on DVD – has been shown to audiences of nurses, doctors and other healthcare staff at special screenings organised by the Sepsis Trust.

“It is actually one of the most common causes of major illness prevalent in hospitals today”

Tom Ray

Mr and Mrs Ray – known as Nic – have taken part in screening events, as well as speaking at healthcare conferences and directly to senior figures including health secretary Jeremy Hunt.

Sepsis Trust events director Pippa Bagnall said both the film and hearing directly from the Rays often had an “overwhelming” impact on clinicians.

“The over-arching message we want everybody to leave with is that, when they have a sick person in front of them and they are not entirely sure what is going on, they just have to ask themselves: ‘could it be sepsis?’” she said.

“If they do suspect it is sepsis, then the quicker you start antibiotics, oxygen and fluids then the greater the chances you can halt it,” she said. “It doesn’t require massive intervention, but it does need to be done as quickly as possible.”

As well as highlighting the importance of knowing the signs and symptoms and acting fast, she said the film contained key lessons about aftercare and support for sepsis survivors – something that had been lacking for the Ray family.

“People who are working in the community and mental health need to realise that for people who have had sepsis – actually their whole life has changed,” she said. “Even if they don’t lose limbs, people can be ill for a very long time, because their organs have been absolutely battered. They are changed even if physically they look okay.”

“That two hours achieved more than any standard operating procedure, pathway and education”

Elizabeth Rix

Starfish was shown to a 200-strong audience of nurses at University Hospitals of North Midlands NHS Trust, who also heard from the Rays, at an event in May to mark International Nurses’ Day.

Trust chief nurse Elizabeth Rix said the film and a subsequent question and answer session had a profound impact on staff.

“That two hours achieved more than any standard operating procedure, pathway and education could ever achieve,” she said. “I know the nurses learnt that morning and will never forget meeting Tom and Nic. This has not only taught them about sepsis but the reality of our actions as nurses on patients, their families and their lives.”

She told Nursing Times that the “could this be sepsis” message was “imprinted on the heart of the organisation and in the minds of our nurses”.

“This has reinvigorated our sepsis team to continue embedding the skills and knowledge required to ensure we always ‘think sepsis’,” she added.

University Hospitals of North Midlands NHS Trust

Trust announces departure of ‘inspirational’ chief nurse

Liz Rix

Mr Ray said he believed it was possible to reduce the number of deaths from sepsis each year through “information and smart practices in A&E”. But the father-of-two also stressed the need for good aftercare for those affected – especially when it came to mental health support.

“I’ve not had an hour’s counselling and I’ve been through a tremendous battle with post-traumatic stress,” he said. “My family became my counsellors and that wasn’t right. I put pressure on them to dig me out of holes for a number of years and they succeeded but the PTSD almost became unmanageable at several points. That’s what the film Starfish depicts very well – that descent into isolation and anger.”

He said he had also had to fight to get good quality prosthetics and access to the very best treatment in the field of reconstructive facial surgery. Meanwhile, one of the biggest challenges has been the impact of his illness on family finances – and this was another factor that should not be underestimated by healthcare professionals and other support agencies.

“The economic impact of sepsis is as dramatic, and trying to bring up a family in these conditions has been a real struggle,” said Mr Ray, who used to work in corporate banking but now works in a call centre.

“Ever since I came back from sepsis, I have basically been on minimum wage with no wage increase for the last 10 years,” he said “We lost all of our savings and had to sell our house. As soon as I could, even as a quadruple amputee with a completely wrecked face, I had to get out to work and find a job.”

“It doesn’t require massive intervention, but it does need to be done as quickly as possible”

Pippa Bagnell

Mr Ray, who initially trained as an actor and now hopes to carve out a career as a motivational speaker, said he could not have coped without the support of his wife and family.

“I have been absolutely blessed – for some reason I was put together with the most beautiful, practical positive woman in the world and I owe everything to her in terms of my rehabilitation and recovery,” he said.

However, he also paid tribute to the “hundreds of nurses, doctors and consultants that have got me back on my feet”.

“I grew up in a single parent family – I didn’t have a dad and the one thing I wanted to do as a grown up was to be a good dad,” he said. “The other day my son rang me on his phone – he was lost and had missed the last bus home so I drove out to find him.

“It took a long time but eventually I found him standing at the bus stop in the dark,” he said. “After everything that has happened, it is just amazing that I can be around to be the dad that picks him up. That means everything to me and the only reason I can do that was because of all those nurses, doctors and consultants who somehow found a way to save me.”

The Sepsis Trust is currently working with the makers of Starfish to produce a training package based on clips from the film and is seeking sponsorship. The hope is the resource will be available to NHS trust training teams within the next few months.

  • The Starfish DVD and a range of clinical resources on sepsis are available from the Sepsis Trust website. The Sepsis Trust offers special screenings of Starfish for a fee.
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