Intensive care: Life after near-death
Every year, thousands of patients pass through intensive care units. For many, the biggest trauma comes when they go home. Simon Usborne explores a vital issue that tends to be overlooked
Tuesday 25 August 2009
The breathing tube in his windpipe meant Neil Holland couldn't speak when his wife, Sally, told him their only child had been killed in the crash. Three weeks earlier, Holland had been taking football-mad Luke, 14, to see a physiotherapist when black ice sent their car sliding into the path of an oncoming vehicle. He regained consciousness two days before his son's funeral, but could not be there. And then, seven weeks after the crash that destroyed their family, the Hollands were sent home to carry on with the rest of their lives.
"I'd say that was the hardest time," says Holland, 18 months after the accident, in which one of his shattered ribs punctured his heart. "The challenge was to get back to some sort of normality knowing that my boy wasn't going to come through the door at four o'clock from school. From one day to another, life was getting very stressful."
Neil and Sally's story is typical of the thousands of patients who have the misfortune to pass through one of Britain's intensive care units (ICUs). Afflicted by trauma or life-threatening illness, they rarely have time to prepare for life among the beeps, whooshes and dimmed strip lights of the critical care system. But for many, the real trauma starts when they return home with their families, forced to cope, often with debilitating injuries, nightmares and, in the case of the Hollands, crippling grief.
"They had to tell me again and again because it was too much to take in," says Holland, 46, who also suffered a broken hip and collapsed lungs in the accident. "Luke was a typical boy who loved his football and knew right from wrong. To this day, it's so hard to hear other parents talking about their children. I ask questions about them but it's knowing that my son is missing out on these things."
Critical care patients at the Royal London Hospital in Whitechapel, where Holland was airlifted after the crash near his home in Dorking, Surrey, are fortunate, in some ways at least. In common with some but by no means all Britain's ICU patients, they are invited to monthly follow-up clinics after they are discharged. Consultants, nurses, physiotherapists and psychologists are on hand to offer practical advice and support. But for all their skill, these professionals can only do so much to ease the pain and emotional strain that greets intensive care patients when they are on their own.
"Like Neil, a lot of people are brought into the Royal London by helicopter because they've been in car accidents or are the victims of serious assault," says Sarah Herbert, a sister at the hospital's ICU. "It's all very sudden and traumatic for these families, who are given no preparation and are plunged into an alien environment in which they feel they have no control. The memories of that can be horrific and while we can offer them sympathy, what they want is empathy – somebody who understands what they are going through."
Spotting a gap in the care offered to people after they are discharged, Herbert began talking to patients in the follow-up clinic about some of the unique challenges they faced. "I met patients who had totally lost a period of time in their lives," she recalls. "They look at their body and see the scars and hear stories about how they almost died but have no recollections. Their sleep patterns are altered and the drugs we give them can result in nightmares and hallucinations. I see families who are struggling with their emotions, having been told there's a high chance their loved one might not make it."
Herbert discovered that there was a higher incidence of anxiety and depression in family members than in the patients themselves. As a result of her research, the Royal London, which is part of the Barts and the London NHS Trust, has become one of the first hospitals in the country to offer a support group for recovering intensive care patients. Operating in parallel with the hospital's follow-up clinics, the group now gives patients and, crucially, their families, a forum to swap stories, share advice – and to discover they are not alone.
For the Hollands, who have been part of the support group since its foundation in April, the three meetings they have attended have been a lifeline. "Just hearing other people's experiences in the support group has helped," says Sally Holland, 44, who spent three weeks arranging her son's funeral alone while Neil was under full sedation, and nearly two months travelling to hospital and back. "It was just good to talk about what you've been through, and feeling you're not on your own.
"Coping is a different kind of experience for the family," she adds. "You are completely conscious, unlike the patient, and have to go through all the emotional trauma alone. But the hardest thing was deciding how I was going to break the news to Neil about Luke."
The Royal London is now establishing links with one of the few other support groups in the UK, at Milton Keynes. Spurred on by the success of the London group, Herbert and her colleagues want to establish a charitable foundation providing support across the country. "If you've got cancer or Alzheimer's, we know there are countless support groups and community schemes offering help," Herbert says. "You have a traumatic car accident and there is no traumatic car accident group. That needs to change."
Meanwhile, the Hollands are still piecing together their lives. Neil, who was initially given a 1 per cent chance of survival and remained under full sedation for three weeks, says he still has "issues" about how and why the accident happened. "I wanted to find out if I was doing anything untoward but I was told by the police I was not to blame," he says. "The conditions were terrible that morning. I was in the wrong place at the wrong time."
Neil and Sally returned to work – as, respectively, an accountant and a legal secretary – 15 weeks after the accident. Unlike many couples who lose a child, they have managed to stay strong. Neil still suffers from numbness around his repaired hip and his lungs aren't what they were. "My breathing has become very erratic," he says. "Walking 200 yards feels like 10 miles."
But the physical reminders of the crash haven't affected Holland's love of football. He still coaches the youth team his son used to play for. "It's very hard sometimes to be around them without Luke but I wanted to give something back," he says. Dorking Football Club recently hosted a floodlit memorial match, refereed by Neil, and last year the Hollands raised almost £50,000 through a 10km run at London's Hyde Park. The money went to the Surrey Air Ambulance, without whose helicopter Sally would have lost everything.
As well as the follow-up clinic and the new support group, the Hollands have attended bereavement sessions for parents who have lost children. "The meetings at the Royal London have been fantastic," Neil says. "But sometimes people can't understand how you feel because they can't get to that level of bereavement."
The meetings and counselling aside, it's their memories and pride in their boy that, while more painful than Neil's physical injuries, have helped the Hollands dress the wounds of loss. Last January, on the first anniversary of Luke's death, they held a memorial service at a church near their home. More than 500 people attended and for Neil, who missed his son's funeral, it was a chance to say goodbye.
"It was my time to give some thoughts about my son," he says. "I was able, with difficulty, to speak for about 15 minutes and after the service we gathered in the church hall and showed a nice video of my son with his friends. It was lovely to see everybody – I'd missed that at the funeral – and there was great comfort in knowing that people really liked Luke. Still today I go through some very quiet times. But without the support we've had – at the Royal London and from our friends and family – as well as the memories of my son, I can honestly say I don't think I would be here."
Intensive care: The facts
Just over 1,000 patients are admitted to the intensive care ward at The Royal London Hospital each year.
Patients recovering from operations tend to stay for two to three days in intensive care. However, longer-term patients (at which this follow-up support group targeted at) can stay on the ward up to two months.
The main categories of patients seen in intensive care are trauma patients (gunshot wounds/stabbings, falls from height, car accidents), general surgery patients, general medicine patients (those with medical conditions who present in hospital as emergencies) and patients in sub-specialities such as neurosurgery, vascular (veins and arteries) etc.
The Royal London Hospital has on average 17 patients in intensive care at any one time. The hospital's death rates for severely-injured patients are 28 per cent below national average.
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