Meet the patients: Christine Bartlett and family

The following is a letter written by intensive care patient Christine Bartlett and her family, plus some explanatory notes from the GICU team.

Christine's recollections

"I have hardly any recollection of my time in ICU as I was unconscious for most of it.  I was rushed into Southampton General Hospital in May 2010.  I only know this as other people have told me.  After that there is a large gap in what I can remember about what happened over the subsequent weeks. 

"My first vague memory is of lying in bed and hearing staff fussing around the bed next to mine.  When I woke up I had a tube down my throat which was very frightening as I couldn’t speak.  A lot of things had gone wrong with me physically including a blood clot that affected the circulation in my left leg.  Eventually I had to have an amputation below the knee.  I can remember being very angry with the doctor who came to tell me that I might lose my leg and I wouldn’t speak to him. 

"I was moved around a bit in ICU before being sent to D ward and I can remember being in a room on my own at one point.  I appreciate now how much I owe the staff in ICU as they saved my life.  I would like to go back and visit one day to see where I spent so much time and thank the staff properly.

Family perspective

"Obviously, this was a very stressful and worrying time for us all as we were told that Christine’s life was in danger.  She had gone from simply feeling unwell to being on life support in the space of 24 hours. 

"For several weeks our lives revolved around ICU visiting.  Two of Christine’s children who lived abroad flew back to be with her.  To begin with we were all there all the time but when it became clear that we were in for the long haul, we drew up a rota. 

"The waiting room became the focus for our day and we spent many hours in there worrying, crying, talking, eating and drinking.  We met other people in the same position and got to know a few to chat to.  We were able to talk freely in there as we had to put on a brave face when we went onto the ward.

"We began each day with a feeling of fear about what the medical staff would tell us.  First, it was the fear of Christine not making it at all and never regaining consciousness.  Then it was the fear about what her condition would be if she did survive.  We were told there might be brain damage and that all her limbs were in danger due to the lack of circulation.  Between us we spent many hours massaging her hands and feet which seemed to be permanently icy.  Thankfully, she only lost a leg in the end. 

"The medical staff kept us fully informed from the outset while she was in ICU.  Communication was not as thorough once she moved onto the other wards.  A huge vote of thanks must go to the staff of the ICU who literally pulled Christine back from the brink."

Christine's son

The following are some thoughts from Christine’s oldest son who supported her through all her time in hospital.

“There were many nurses who cared for mum during her time in ICU, one every 12 hours for weeks. They were incredibly supportive of the family as well. At times you are scared, at times frustrated and at times angry. You experience every emotion. You then truly marvel at the wonder of the human body’s capacity for recovery and what the medical teams are capable of.

"My only other comment is that as mum came round and began to recover there are a new set of challenges to work with. However, there are some great people who support you in this. The only thing sometimes is that the basic human needs of a daily routine are not given the right amount of focus. 

"I cannot thank the people who helped mum enough, as on the night she was unconscious in the emergency department I feared I might lose her."

Explanatory notes from the ICU team

Our team have listened to Christine and her family's feedback and hope the following information will help patients and families in similar situations.

Communication

Whilst patients are in intensive care, they are so unwell that they require constant nursing and medical attention and so there is a greater presence of staff around to keep families updated on a patient’s progress. There is generally one nurse to every 1 or 2 patients and information is often 'on tap'. Once the patient is well enough to transfer to a ward area, they do not actually need such a high presence of nursing or medical staff. This is reflected in the reduced number of staff around them on the high dependency or ward area. This transition whilst being a huge step forward, can actually be very stressful for the patient and their family. The patient has to quickly adjust to a new environment with fewer and different staff, little or no monitoring and staff responding to a call buzzer rather than simply being at the end of the bed! Our Outreach team of critical care nurses will also review every patient who leaves our unit and ensure the right level of care and observation are in place. They are instrumental in easing the transition to the ward and will refer to the relevant people any areas of concern.

The ward environment can initially prove frustrating for families too particularly when they are accustomed to regular updates on their relative’s condition, as ward staff are very busy caring for many other patients. However, nursing staff and the medical teams will endeavour to find the time to talk with concerned families so please let any of the ward staff know that you would like an appointment to speak with them.

Daily routine

It is great to hear such appreciation for the care Christine received as we strive to provide best quality care to all our patients. As Christine's family highlighted, with all patients who have been sedated and on a ventilator, the 'waking up process' when sedation gets reduced, does often bring a new set of challenges. It is often unpredictable in length from a few hours to several days. Also, what can be quite disturbing to visitors is that the patient's behaviour and reactions on waking can be very 'out of character', and they may be troubled by bizarre dreams or hallucinations. This is generally short-lived and gradually the person will get back to being their usual self, although unaware of what has actually been going on!

Their physical recovery can go on to take many months to a year, to return to normal and there may be psychological and emotional issues which can take just as long to settle. The General ICU follow up service is there to support patients recovering from a critical illness. In general, clinic appointments are arranged for longer stay patients once they have been home for several weeks. If patients do not hear from the team and would benefit from the support of the team, please contact the General ICU or see our after ICU and follow up clinic pages.

The unit appreciates that there is not always the ability to provide a daily routine to assist a patient’s recovery due to the unpredictability of the unit’s workload and emergency admissions. We aim to provide a general routine to the day regarding physio in the morning, ward rounds late morning, and washtimes in the evening and / or first thing in the morning. We are currently working to create even more routine to the day and have recently instigated rest times between 2 and 4pm and so discourage visiting during this time. We would, however, encourage any further ideas that past patients or their visitors have regarding how we could improve the routine further.