Sadness of miracle workers
IN the first few dark hours, nobody knows if, or how well, a head injury victim will recover. But heaving weathered the initial crisis, the angels at Addenbrooke's Hospital witness some amazing stories of beating the odds.
By Tracey Sparling
IN the first few dark hours, nobody knows if, or how well, a head injury victim will recover. But heaving weathered the initial crisis, the angels at Addenbrooke's Hospital witness some amazing stories of beating the odds. Features editor TRACEY SPARLING looks at the first steps of recovery, on the wards.
THEY call it 'the long lie.'
Those heartwrenching days, weeks and months, which it can take to get back on your feet after suffering a traumatic brain injury.
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Even after patients are out of the hospital bed, it can be years before they claw back any semblance of what life was like, before the accident befell them which changed them forever.
Yesterday The Evening Star featured the neurosciences critical care unit, at Addenbrooke's Hospital in Cambridge where the lives of head injury patients from Suffolk are saved. When patients come off the ventilator it is a landmark moment, but it is only the start of the process.
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When they no longer need intensive nursing, they leave the unit for one of the two neuro wards, then a rehabilitation unit, or to get rehabilitation at home.
Clinical nurse practitioner Liz Corteen, helps patients and their families from the day of their arrival, to getting home. Yet despite helping hundreds of people through the trauma, this young woman doesn't know how she would cope on the other side of the fence.
She said: “Until someone you love is in intensive care, you don't know how you are going to react in that situation. I see head injuries day in day out, but I still don't know how I would cope if I found myself in that environment, on tenterhooks, 24 hours a day, waiting. I wouldn't wish it on anybody to go through that.”
When her bleep goes off, she never knows what it's going to be, and judging any patient's outlook is almost impossible in the early stages. She said: “We had two young lads on the unit, with similar injuries from similar accidents. They were the same age, they even looked so alike they could have been brothers. One is now in a nursing home for the rest of his life, the other shook hands, said 'thank you very much', and walked out of here. You can never say what outcome will be.”
The dedicated staff save lives on an almost daily basis. But in the fullness of time, working miracles is not always the best course.
Liz said: “One patient's wife told me she had spent hours praying in the chapel, begging him to survive. He did, and when we went to see him in a nursing home later, because he was too unwell to travel here, he had less function than a newborn baby. His wife said if it ever happens to anyone else, we should turn the machines off.
“Two weeks later the son rang up and said: “I've got some fabulous news - dad's died.' However much your natural instincts are to save patients, in that case, what happened was the best outcome for him. I found that very difficult to cope with.”
Two out of three families are not able to cope with the problems they face after a head injury. The patient's personality often changes, they can lose the usual inhibitions and may start swearing, and saying just what they think.
Liz said: “That can be very difficult to cope with for everybody. Patients themselves often don't realise things have changed, that they have lost some abilities or skills - and those skills might never come back, or they might with time. They can also be left with confusion, short term memory loss, and be unable to do more than one thing at a time.”
Liz looks for trends and common factors in head injury cases, like alcohol which often sparks assaults. She pointed to a pile of patient files inches deep, all related to heavy or binge drinking, or alcoholism, and said: “50-60 per cent of head injuries have a high alcohol element to the injury…I appreciate not everybody has the same background as me, but my role is about helping them evaluate their life choices in future.”
Many patients have mental health problems before their accident, and it is not unusual to see patients arrive chained to security guards after they have committed a crime. Staff have to put aside their own feelings about the alleged crime, and treat everyone the same.
On the other hand, one patient was a respected GP, a fine upstanding pillar of the community. But Liz said: “He looked around the ward saying 'I don't know why I'm here, none of these are my patients.' He was confused, and standing there in just his pyjama top with no bottoms on. His wife was utterly mortified! There can be some amusing moments, but it was so sad at the same time.
“This is such a heart warming job and you see some amazing things, and meet some fantastic people.”
There's more to recovery than just walking and talking.
On a Monday morning, hospital support officer Cheryl McLaughlin from the charity Headway collects a list of names from A&E, of everyone who has been admitted with a head injury.
For her, each week brings a new set of challenges, trying ultimately to get patients back to leading independent lives.
She said: “My role is about sitting, supporting and signposting people towards lots of information and services which can help, when they can absorb it.
“I can't tell them what's going to happen. It can be very humbling to see how a family holds it together, and is there at the bedside 24 hours a day.
“Although I have a nursing background I am a neutral person for them. I encourage them to ask lots of questions when they see the consultant. I am very often watching the person's body language to see how they take in what the consultant says. The patient is being looked after, they are in a coma, and couldn't get better care anywhere, so this is our chance to give the family help.
“As a parent myself, it does play on my mind when children are involved, but I take comfort from the fact that we each do our little bit to help them.”
The hospital also has a Citizen's Advice Bureau and personal injury lawyers (solicitors help fund Cheryl's role) on site.
In her unique, part time role at the hospital, Cheryl stays with patients right through the time they need help.
She said: “Recovery is a very gradual process. Patients come back at three, six, 12, 18, 24 months then eight years.”
Cheryl loves meeting people again when they attend the hospital's traumatic brain injury clinic later, as outpatients, and said: “What keeps my sanity is to see their recovery further down the line, developing new interests, making new friends, showing that there is life beyond a head injury.”
Helen Seeley never meets a patient, but hers is one of the many background roles which help thousands of people get the right treatment.
She collects and analyses data as part of the Eastern Region Head Injury Study, which aims to shape an effective regional service for head injury patients.
Our region's 20 hospitals including Ipswich were surveyed to see where there were gaps in services., and Helen, who is a clinical auditor and researcher, said: “Rehabilitation for patients is generally not very well provided for, for example. We identify what needs to be done to fill those gaps, in an ongoing, cyclical process.”
She added: “Even though I am not helping patients on the wards, I can see that what we are doing is having some kind of effect, and we are all working to the same end.”
Every year, out of every 100,000 of the population, between 10 and 15 people suffer a severe head injury. 15 to 20 people suffer a moderate head injury, and between 250 and 300 people a mild head injury.
The death rate following traumatic brain injury is about nine per 1000, but many survive.
By the year 2000 it is estimated that 135,000 people in the UK will require round the clock care after surviving severe head injury.
The scale of brain damage is determined by the Glasgow coma scale. Scores run from a high of 15 to a low of 3. People with a "mild" brain injury score 13 to 15. 9 to 12 is considered to indicate a "moderate" injury and a score of 8 or less reflects a "severe" brain injury.
N See tomorrow's Evening Star for the final part of this series which catches up with an Addenbrooke's patient.