Addressing the long-term impact of critical illness
Jo McPeake has been researching some of the issues currently affecting hospital and post-hospital care for survivors of critical illness. She says, “There is a lot of emphasis on what we call the ‘front door,’ with a lot of people waiting for ambulances and A&E. Once you get past the front door, different but important issues can arise.” At the other end of the hospital system, patients are facing delays in discharge and social care, and social and community care provision are also experiencing challenges.
Patients may spend time in critical care if they are seriously ill and need intensive treatment and close monitoring, or when recovering from some types of surgery. The number of people who are being admitted to critical care is steadily increasing, but the recovery trajectory for patients, their families and their caregivers can often be very challenging long after discharge.
Jo’s research into improving health and social care delivery in the critical care environment demonstrates that patients who survive a stay in an intensive care unit (ICU) stay can be left with physical, cognitive and emotional problems. She says, “This can have a considerable impact on patients and caregivers as well as the health service, with 25% of ICU survivors being readmitted within 90 days of discharge.”
Patients first
Jo’s work explores the long-term consequences of sepsis and acute illness on patients. She explains, “Sepsis is an acute event, which means it’s severe and sudden in onset. It’s also often assumed that patients recover quickly and go home, when in fact there can be lingering effects. Some people have a horrible experience after they have been discharged from hospital. My work explores these issues and aims to improve outcomes.”
Jo’s current research also examines the long-term outcomes for family members of critical care survivors.
How we help people to live a good and full life and care for their broader social network is often overlooked. It’s important that we ensure that families are also supported following the critical care experience.”
Freya, a patient who has been hospitalised with sepsis twice, was unprepared for the long-term effects that the illness would have. She says, “I had no idea when I left hospital the first time what to expect from recovery – There was no indication of how long it could take, or what symptoms I might encounter. I relied on family members to help with cooking and shopping for the first few weeks.”
Some of the effects that Freya experienced were physical, such as extreme fatigue and hair loss, but there were also cognitive effects, “I found it very difficult to concentrate, to find words, and my short term memory was noticeably affected.”
Following Freya’s second hospitalisation, she experienced DRESS syndrome – a reaction to one of the antibiotics used – and has seen several specialists for a range of procedures. “I remain chronically fatigued and still feel as though my brain doesn’t work properly”, she says.
Jo has been working alongside the James Lind Alliance, an organisation that works with patients, carers and clinicians to identify and prioritise the most important research questions for sepsis research. “I was privileged to have been asked to be clinical co-chair for the James Lind Alliance for Sepsis Research in the UK,” says Jo. “We’ve worked with over 1000 members of the public and clinicians in the UK to create a list of research questions that we recommend should be explored. This process should help researchers focus in on the public priorities around sepsis research.”
During her recovery Freya contacted organisations carrying out research, raising awareness and offering support to people who’ve experienced sepsis and its effects. She says, “I contacted Sepsis Research FEAT, and the UK Sepsis Trust, whose support proved invaluable. I also took part in the Sepsis Research FEAT/JLA sepsis priority setting project, as part of the final workshop that took place in Cambridge.
I found that meeting and working with other sepsis survivors, and a range of professionals with expertise in identifying and treating sepsis, was an amazing experience. I very much valued the opportunity to share my sepsis journey with others who were as keen as I am to make a difference to people who develop sepsis in the future.”
Research into the care for and long-term effects of sepsis is one area of hospital care in which Jo’s research hopes to make a difference. Hospital admissions will always feature in the headlines. Jo’s work shows that we need to think about care while in the hospital and long afterwards, and to think not just about patients but the people who care for them.
