Ahead of World Sepsis Day, Patient Claim Line spoke to Tom and Nic Ray, the incredible individuals behind the public speaking company, Resilience and co. Tom and Nic are two voices with a shared message; be sepsis aware. The following article will detail the couple’s incredible story. A narrative that showcases unimaginable challenges, fighting back in the face of adversity, and together, defying incredible odds.
“The key theme that we need to get across is that if you suspect sepsis, or you’re in a situation where you’re medically declining, you need to get access to emergency care very quickly. Initially, my issue was that I’m a real tough guy from Essex and I’d never had any kind of illness in my life. So, I really did think I was going to be OK – I thought it was just a case of ‘man-flu’ or something similar.
But, as it turned out, it was much more serious.
In addition, The medical response was very slow. One thing we know now is that if you have got the early offset symptoms of sepsis, you need to get treatment within one hour. Otherwise, you’re going to end up with amputations, or seriously, you’re going to die.”
Tom isn’t wrong.
More than 50,000 people die from sepsis every single year in the UK. Furthermore, a large proportion of those diagnosed are based in the North West of England, in Blackpool.
“Hundreds and thousands are suffering amputations because medical intervention is coming too late. A good analogy is that if you’ve got sepsis, you’re actually on fire. If you don’t put the fire out quickly, you haven’t got a hope in hell of surviving.”
Sepsis is unique in the fact it doesn’t discriminate. Regardless of your sex, age, race or level of health, you can fall victim to the disease.
However, it can be stopped in its tracks if it’s spotted early.
When someone becomes very ill with sepsis, Tom and Nic know that within that hour, you or someone nearby must ask the question, ‘could this be sepsis?’
“Our message is about getting people to ask that question. It doesn’t matter if it’s through NHS 111, a friend, their GP or through at a hospital. We want to empower everybody to be able say, ‘I am so sick, I just wonder if I have sepsis?“
Tom’s passion comes from an incredibly unique experience.
In 1999, Tom and Nic were newly married with a three-year-old daughter, Grace and baby number two, Freddy on the way. Then, almost overnight, their lives changed forever. After a routine dental appointment, Tom suddenly developed symptoms of sepsis.
What followed changed their lives forever.
Tom spent the best part of the new millennium in hospital. This included months in intensive care, endless reconstructive surgery, and rehabilitation. Consequently, the loving husband and father lost his legs below the knee and arms below the elbow, as well as much of his face.
“The worst thing was having my face amputated and having to have it reconstructed. The impact on myself has been profound, especially in terms of post-traumatic stress. Also, it’s affected my marriage, my relationships with my children and it’s destroyed my career.
I work on minimum wage in a call centre and even though I’ve got a post graduate degree we’ve worked out our sepsis experience has cost us over a million pounds. It’s been a devastating experience. I just wish I said the words out loud, could this be sepsis?
It’s destroyed my life and I’ve had to change so much and cope with so much every day. It’s a real challenge. I’ve chosen to respond to that positively, but I still feel quite angry looking back. I could easily have been one of the ones they called into A&E straight away and received the right antibiotics and walked away.
My wife’s life has completely changed. She’s lost a husband and gained another child to look after. It’s also affected my relationship with my children. When I sit there late at night, working until 10pm in a call centre, I just wonder how on earth have I ended up like this?”
It isn’t just Tom who suffered as a result of his sepsis diagnosis.
Nic also experienced each challenge that came their way.
At the time of Tom’s diagnosis, Nic was 9 months pregnant with Freddy and had a two-and-a-half–year-old daughter to look after. Consequently, the life they once led changed forever.
It’s like a runaway train through your family. My career stopped dead, we had to sell the house and we had to sell the car. Not only this, we moved in with my mum. We really did have to go back to ground zero and reconstruct our lives from ruins.
You’re firefighting I’m so many levels. For example, you’re trying to look after the kids as well as Tom along with trips to and from the hospital. He was so vulnerable, and you almost had to prioritise him above your new-born because he had so many needs that you had to attend to. After that, the aftermath is enormous.”
Where the couple live in Rutland, East Midlands, there are very little medical facilities within reach.
As well as that, it’s sandwiched between five counties and they would often travel to specialists in Nottingham, Leicester, Cambridge, Northamptonshire and South Yorkshire.
“I basically became a full-time driver to get us to all these places at the same time as having to keep a family. Moreover, everyone gets sucked into this sort of vortex. As Tom’s wife, you’re the linchpin.
You’re communicating to everybody. You’re communicating and editing stuff, you’re thinking about how to say stuff so that people can understand the importance. I found myself curating a lot, holding a lot information I couldn’t say at the time because I knew it would damage Tom’s positivity. It would be so overwhelming.
This intense micromanagement happened for a good two or three years. You just must give your life entirely to sepsis, meanwhile, your life ceases to exist. The partner of the person with sepsis must become incredibly patient. You just have to put yourself on hold. Additionally, don’t think for a second sepsis just happens to the one person, it can affect anyone without warning or obvious cause. 250,000 suffer from sepsis every year in the UK.
I ended up having to get counselling after a couple of years because I had PTSD, depression and bereavement. I just got stuck.“
Everybody who meets Tom and Nic admires their openness.
In 2016, Tom and Nic joined up with Pippa Bagnall following the premier of the film Starfish in Mayfair, London. The film is an incredibly powerful portrayal of Tom and Nic’s experience of sepsis and their long journey of resilience.
Pippa is a clinician with significant experience of working in the NHS, voluntary sector and on the national and international stage.
“We’re in Blackpool this week at the invitation of the Blackpool Teaching Hospitals NHS Trust to raise awareness of sepsis and to discuss how to develop personal resilience.
One of the key messages we’ve been working hard to get across during sepsis awareness week is that everybody needs to know about sepsis. It doesn’t discriminate.
What is incredible when it comes to Tom and Nic is the fact that they are the most wonderful example of turning sorrow into positivity, especially positive thinking for others.
That has become the cornerstone of our work as Resilience + Co. We work as a trio representing the patient, carer and clinician.
There are some excellent professional educational materials on the UK Sepsis Trust. Our aim is to spread awareness to people so they are forewarned of the signs and symptoms of sepsis. They are:
Sudden onset of:
- Shaking and shivering
- Severe breathlessness
- Low rather than high temperature
- Rapid pulse
- Low urine output
- Nausea and vomiting
- Mottled and discoloured skin
- “I feel I am going to die”
People with sepsis can deteriorate rapidly and speedy diagnosis and treatment can mean the difference between life and death. We have thoroughly enjoyed our time working with Trevor Morris and his integrated care team on their highly effective work on sepsis awareness.
As a result of their experience, Resilience + Co are keen to spread awareness of sepsis and resilience far and wide.
And although it’s taken a great deal of courage to get to where they are now, the love shared by Tom and Nic has planted seeds of hope where there was once scorched earth.
“Freddy is now nineteen and about to embark on a journalism course. One of the great things that Freddy and I have been doing together is going to see Leicester City.
From about the age of six I have been taking Freddy to see Leicester City, back when they were in League One and we’ve been to every home match ever since. We used to go to a lot of the away games as well. It was a real education for him.
One of the really touching things is that they gave him a little card saying he was my disabled carer when he was six. It’s one of his proudest possessions and he’s been looking after me at the football ever since. Even as a youngster he’d go off with the other Dads to get me a cup of tea and make sure I got down the steps and everything.“
Nic was also quick to heap pride on their first-born, Grace.
“Grace is now 22 and studying Astrophysics at Manchester University. Tom and I were flaky arty types, only good at English. I don’t know where these maths and science genes come from!”
“One thing I really wanted, even in the wreckage of sepsis, was to show that I could still be a disabled dad. For example, it took a lot of courage to take the kids on the school run but I learnt how to drive even without hands and feet. I got an adapted car and I went on the school run. Standing at the school gate with children passing with an amputated face is quite a fast learning experience. Overall, It taught me a new way of being resilient.
This new concept of resilience we found is very profound and important to us. Firstly, I’ve learnt somehow not to be angry and to accept the situation that I’m in and see the advantages. It’s made me a lot better at relating to other people and understanding their problems. Everybody goes through something, whether it’s death, divorce, separation, addiction, homelessness. All kind of things that effects individuals.
I’m very conscious that everyone is going through stuff to deal with. So, if I can show that I can live a semi-normal life where I go to work, pay the bills and spend time with the kids, it’s a good example for other people to know they can deal with their situation.”
Right now, it costs the NHS £15.2 billion pounds a year to deal with sepsis. To clarify, this equates to around 8% of the total NHS budget.
Although there’s still an incredibly long way to go, Tom and Nic’s mission through Resilience and co. will only improve general sepsis awareness.
If you have been directly affected by sepsis, please call The UK Sepsis Trust’s general enquiries number on 0800 389 6255.
If you would like to invite Tom, Nic and Pippa to one of your events please contact: