Matthew Ames was 39 years old when he suffered a life-threatening reaction to what started as a sore throat. The father of four developed sepsis, leading to the loss of all of his limbs. This is the story of his illness and recovery.
Matthew Ames almost died from sepsis – surviving only after the amputation of his limbs.
While Matthew was treated in the Australian health system, the lessons learned can be applied internationally.
With a senior health and safety role in the oil and gas industry, Matthew has always had an interest in reviewing adverse events from a systems perspective.
Since his experience with sepsis, he has shared his story with health professionals with the aim of prompting system improvements that could lead to better outcomes for others.
In 2018, he visited New Zealand as a keynote speaker at an Infection Prevention and Control workshop held by the Health Quality & Safety Commission Te Tāhū Hauora.
Thirteen years on from his life-changing illness, Matthew and his wife Diane reflect on his diagnosis, recovery and lessons learned.
In 2013, Brisbane-based father of four, Matthew Ames came down with what he thought was a common sore throat.
The 39-year-old visited the doctor with flu-like symptoms and was diagnosed with a viral illness. He continued to go to work that week, however, his condition deteriorated.
‘I had fevers, rigours, shaking and was nauseous and dehydrated,’ Matthew says.
Matthew went to a hospital emergency department where his symptoms were again dismissed as a viral illness and he was sent home.
Unfortunately, Matthew became more unwell, and he noticed a small rash on his arm.
‘It was non-blanching, it didn’t go away when you pushed it, and it continued to get larger over the course of the next couple of days.’
He called an in-home doctor who also told him he had a viral illness.
The following day it had become painful to move, and Matthew was feeling worse than ever. He visited his local GP who again thought he had a viral illness.
At this point, with his symptoms getting worse, Matthew went back to the emergency department. The last thing he remembers is running through his symptoms with a nurse before waking up from an induced coma about three weeks later. Matthew’s body was fighting sepsis.
Matthew had a group A strep infection.
‘Strep throat is fairly common, but the bacteria invaded my bloodstream.’
He was put into an induced coma to give his body a chance to fight the infection. Unfortunately, the intravenous antibiotics he was given didn’t work and Diane was told the only course of action was to amputate Matthew’s limbs. Even then, there was only a 1 percent chance of Matthew surviving.
After Matthew woke up his only way to communicate was with his eyes. Diane stepped him through what had happened and how he had progressively got worse. She says he was very accepting of what she was telling him. The hardest part for Matthew was hearing that his children had come to say goodbye to him.
Hearing from Diane he had lost his limbs rather than a clinician was important to Matthew. The way his medical team supported Diane to deliver this news had a positive impact on his recovery.
Matthew’s recovery involved rebuilding his strength, adapting to life without limbs and multiple surgeries. He also needed to learn how to use specialised prosthetics.
Matthew’s children would sometimes stay overnight with him in hospital and staff said they brought joy to the environment, lightening the atmosphere and joining him in the gym.
He says, given the significant health impacts sepsis can have, it's important to allow time to recover.
‘It took about five years for me to find my new normal. Although my life has changed significantly, 13 years on from my illness I have been fortunate to see my children grow into adults, spend quality time with my wife and re-engage in work within the community.’
Matthew says it’s key for patients to understand they are the experts in their own health.
‘Before I became ill, I had never heard of sepsis. The biggest thing I've learned is the significant impact sepsis has on so many people and the importance of diagnosing it early so we can save people's lives.’
Matthew says the community need to understand the catastrophic impact sepsis can have and to be aware of its signs and symptoms.
Confirmation bias may cause health care workers to misdiagnosis patients. Recognising the signs of sepsis and asking, ‘could it be sepsis?’ for patients with confirmed or suspected infections matters.
‘Primary health providers need to be alert to the potential of sepsis, recognise it as a medical emergency and seek the appropriate help.
‘Hospitals need to have a process for identifying and responding quickly to sepsis [including sepsis pathways and antibiotic guidelines].
‘Finally, there needs to be awareness and support for those affected by sepsis, including survivors and bereaved family and friends.’
Matthew says healthcare in Australia can be fragmented.
‘There is variability to the change that has occurred since I was diagnosed. In some states in Australia the hospitals have significantly improved their preparedness, but there is much work still to do.’
Matthew says it helps him to approach health care professionals as trusted partners in his health care.
‘Working as a team, making sure they have the right information and developing a good working relationship.’
He says having trusted sources of information helps make his experience easier.
‘This has started to occur with Sepsis Australia, so we need to make sure this continues to grow, other jurisdictions have similar resources, and these are integrated with the health system.
‘I've been fortunate to witness and be part of significant system change in relation to sepsis in Queensland. This has predominantly been due to the establishment of a sepsis programme within the state’s clinical improvement unit, which has had long-term funding. It would be great if all jurisdictions had a long-term, appropriately funded clinical improvement unit that could drive systemic improvement in sepsis awareness, diagnosis and treatment.’
Matthew says adverse events in New Zealand highlight there are issues around either making a diagnosis too early, making the wrong diagnosis, or diagnosing too late.
‘It’s important [for health professionals] to take that time to really understand the facts in front of us and not explain things away too early with something that’s convenient. In that scenario the care given to patients will significantly improve.
‘The challenge is that “why”. Were you not given enough information? Were you not given the right training to ask the right questions? Do you have the right resources? Are the right people there? Why not? Is budget constraint a factor? If so, why is that constraint there? Perhaps someone very much removed hasn’t understood the implications? What I’ve experienced historically is the deeper you go into those “why” questions the more impact an action coming out of a review can have. The difficulty is there’s always multiple things happening, it’s never in my experience been one.’
He recognises the challenges of systemwide change.
‘It starts at the top. Where people hearing about investigations don’t accept simple answers. It’s not about finding blame, it’s about preventing things in the future and to do that you need to find those deep root causes. It’s hard but it’s very much worth doing.’
The Health Quality & Safety Commission Te Tāhū Hauora works with the health sector to improve early recognition and treatment of patients with sepsis.
Watch the video: Matthew and Diane's sepsis story
Read about sepsis in New Zealand
Diane and Matthew Ames
