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Dealing with trauma
I had made an appointment with my general practitioner because of persistent tingling in my feet and hands. When driving to the appointment, I found I was unable to lift my hand off the gear stick and back onto the steering wheel. A bit of a giveaway that something was seriously wrong...
Diagnosed with Guillain-Barre Syndrome
My general practitioner tested my reflexes (none), made me do a few simple exercises (difficult), and then promptly sent me to hospital. I was admitted to the Clinical Decisions Unit where within a few days I was only able to move my feet and head. After a lumbar puncture, I was diagnosed with Guillain-Barre Syndrome.
It was comforting to know the staff were fully aware of what could lay ahead
That day a member of the hospital's Outreach Team from the Intensive Care Unit came to see me and my relatives. He explained, in full, the worst case scenario if the syndrome was to run its full course and what support they would provide. It was comforting for both myself and my family to know the staff were fully aware of what could lay ahead and that Critical Care were there if needed. It transpired that it would be nearly six weeks before I was taken to ICU.
To the ICU
I spent 30 days in the Unit. Most of that time totally unaware of what occurred due to sedation. I can only remember having a tracheostomy, an operation for a perforated bowel and suffering extremely disturbing hallucination. I was totally unaware of the SVT arrest receiving two shocks and CPR for five minutes, peritonitis, sepsis and pneumonia.
Before being discharged to a general ward, the reduction in the level of nursing care from one to one to something in the region of eight or ten to one. This was explained in full, but triggered a feeling of insecurity, not only for myself as the patient but also for my relatives.
My relatives had a greater feeling of insecurity as they had supported me through the severe effects of my illness, some of which, as a patient I was totally unaware of.
The feeling of insecurity was eased by the knowledge that the Rehabilitation after Critical Illness team (RaCI) on the Unit would be monitoring my progress and would visit if there was a possibility of a relapse or if not, every one or two weeks.
The physiotherapists attended me on my first morning in the general ward. They helped me to stand and asked me to walk a few steps so my fitness could be assessed. I could not move. I sat down and was told to bring my legs on to the bed. This could only be done after my slippers had been removed.
Dealing with trauma
It was at this point I became aware for the first time that I had been critically ill. With the hallucinations I had suffered still very clear in my mind (where they would remain for many years to come), and my physical weakness a feeling of insecurity began to take hold and with it the trauma surrounding my time in intensive care began to develop.
Over the coming months the development of trauma was not helped by a number of issues: Difficulty in controlling my emotions. Family not wanting to talk about my time in intensive care (they felt that once discharged this episode in our life's was best forgotten). What was a realistic expectation of my eventual level of fitness. The institutionalisation caused by a four month stay in hospital (on my second day home I complained that my bed was not being changed). The realisation of the exceptional efforts of the staff in the ICU had made on my behalf and also what I must have put my relatives through began to sink in. Change in attitude to life (sometimes 'sod it' sometimes 'aggressive').
The programme developed by the RaCI team at Royal Berks went a long way to alleviating the trauma that developed. Support from the team was and still is available to me and my relatives 24-7. The one to one visit back on the ward was a good starting point for me. I was able to see the equipment used during my stay in the unit and reasons for its use were explained. The visit also gave me an opportunity to fill in the gaps in my time spent in intensive care.
The three visits to the RaCI clinic allowed me and my wife to discuss any problems that had developed since my discharge and any ongoing concerns about my treatment and its possible long term effects.
Keeping a diary
A day to day account of my stay was provided in the form of a diary. From this I was able to assess the amazing level of care that contributed to my eventual recovery and also what my family had been subjected to.
To me this was and still is an extremely important record and allowed me to bring everything about my stay into perspective. In retrospect the one thing I should have done at the time was to be completely open about the effect the trauma was having. Hiding it from those who were there to help only prolonged the feeling of isolation and with it the healing process. It can be difficult to admit those things that we perceive as a weakness within us.
The value of the Rehabilitation after Critical Illness team (RaCI) attached to an Intensive Care Unit is difficult to quantify. But one thing is for certain: An ongoing need is there. A lack of follow up of a patient after discharge from intensive care from both hospitals and general practitioners can result in an increased need to utilise other NHS scarce resources such as Clinical Psychologists’ and Traumatic Stress Support Services.
The length of time spent in intensive care is not a good indicator of the level of support needed as those patients whose stay is just a few days are often affected as much as those whose stay extends into weeks or months.
The relatives and carers of patients should also be taken in account when considering the overall need for ongoing support. Having been fortunate enough to become involved in the creation and running of the ICU Support Network – Reading which complements the work of the RaCI team, I am only too aware of the ongoing need to support those, like myself and my relatives, who have experienced a stay in intensive care.