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Patient voice

'I overheard conversations that troubled and confused me'

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Janet Wood shares her experiences of the care she received and the challenges she faced whilst coping with necrotising fasciitis.

The patient

I remember going to look around the new intensive care unit at the NHS Trust in which I work before it was opened. It was fantastic. The rooms were bright, there was plenty of space for the medical equipment and the multidisciplinary team to work.

In one of the rooms I focussed on the empty bed and thought what it would be like to be a patient in that bed.  I shuddered. Despite having cared for many patients I had no idea what it is actually like to be the patient.  Ironically, I soon found out.  I have been a nurse for over 25 years and always enjoyed good health.  I have worked in a critical care department although my role is now in an education department in a large NHS Foundation Trust. 

My journey with necrotising fasciitis began on the last Monday of March 2010.  I was at work and the team were looking forward to the forthcoming bank holidays.  I didn’t feel too well and had a mild sore throat.  Group A Streptococcus (GAS) is spread by person-to-person contact (DHPE 2010), so at some point I must have come into contact with someone with GAS.

 On the Tuesday I went home sick and developed gastric flu with an ache in my right knee.  In the morning of Bank Holiday Friday I felt much better until I noticed a painful redness on the inner aspect of my right thigh. The pain quickly progressed to being excruciating.  I could actually see the redness increasing and moving down my thigh.  Somehow the GAS had invaded my skin - I don’t know how as I didn’t have a cut, graze, bruise or insect bite on my right thigh.    

I was admitted to hospital on Friday afternoon with necrotising fasciitis, a form of gangrene commonly known as the flesh eating disease.  I also developed septic shock and acute renal failure.  Necrotising fasciitis is rare with an estimated 500 new cases each year in the UK.  The medical team acted quickly and began a series of operations to debride the dead and damaged muscle, fat and skin from my right leg, groin and hip.  The medical team reconstructed my leg with skin grafts taken from my left leg, abdomen and back.  Fortunately the medical team intervened before I needed an ileostomy, colostomy and a hind quarter amputation.  Initially I was nursed in the Intensive Care Unit.  

My journey physically was difficult and at times problematic. The multidisciplinary team worked very hard and with their care I survived.  Physically I was very weak.  I had wounds on most of my body.   I had regular dressing changes.  The team managed my pain very well and kept me comfortable. 

My journey psychologically and emotionally was also difficult.  Whilst in intensive care I was heavily sedated as well as needing opioid analgesia.  I had horrific dreams and in my dream state I wanted to die because of the awful things that I believed were happening to me.  Being in intensive care was frightening and the fear was not because of the illness - in fact I didn’t know my diagnosis for some time.  The fear was being in an unknown place with unknown people caring for me.  I felt so vulnerable.  I was taught as a student nurse that sedated patients might be able to hear even though they appear asleep or unconscious.  This is very true.  I overheard conversations that troubled and confused me.  I couldn’t communicate how I felt, ask questions or develop a relationship with the professionals who were caring for me. 

As my condition improved I was moved out of the Intensive Care Unit to the Burns Unit.  My kidneys were functioning so I didn’t need to continue with dialysis.  I had been told my diagnosis and that my prognosis was poor however, with the excellent care of the multidisciplinary team I progressed better than expected.  There were many challenges.  I needed to accept that my right leg was part of me and wasn’t the responsibility of others.  It was easy for me to think “they” would sort it out and I would take a passive role.  I began to accept that I was responsible for my recovery. 

I had to make myself eat because the hospital food wasn’t nice at all to say the least!  I was having nasogastric enteral feed which took away what appetite I had.  I had lost ten kilograms since admission and I needed protein to help heal my wounds.  I ate a high protein diet and enjoyed food that friends and relatives brought in for me.  I was discharged on the 25 June 2010.  At home I had the opportunity to regain the weight lost.

I had to learn to walk again.  The medical team had taken 70% of my leg, groin and hip to save my life so mobilising was hard, but with the patience of the physiotherapist, nurses and occupational therapists I can walk with a knee brace and stick.  I might improve in my strength and ability but I can walk and I’m grateful for that.  My leg, groin and hip will never be the same again but I have accepted the change.   I don’t wear jeans anymore; I have a new wardrobe with clothes that conceal my very thin right leg. 

My scars are extensive.  My partner and I have worked through the body image issues and our relationship is stronger.  The occupational therapists manage my scars by giving me a pressure garment and silicon dressings to wear.  The medical team will review my scars in view of further corrective and reconstructive surgery in the future.

The impact my illness had on me is less significant to me now than the impact on my family and partner.  I’m not bitter or focus on why me - after all I survived and cases of necrotizing fasciitis with sepsis and renal failure have a mortality rate as high as 70%.

I had counselling whilst in hospital and many kind words from the members of the multidisciplinary team.  My family and partner didn’t get the same support and opportunity to come to terms with the traumatic stress caused by the severity and swiftness of my illness.  As a family we have talked a lot about my illness in order to come to terms with what happened so we can all move forward. 

  • With thanks to Steve.

Expert comment

Janet’s story is a salutary reminder of the importance of psychological care for critically ill patients and their families. Critical care nurses usually introduce themselves to their patients at the beginning of their shift and should explain procedures before carrying them out. We should use language that the patient will understand and allow patients enough time to process this information. Re-orientating patients by reminding them of where they are, the day and date and reassuring them that they are safe is also important. Due to the amnesic nature of some sedatives this information must be repeated regularly.

Janet overheard conversations that troubled her. Ward rounds and nursing handovers are times of great discussion and unguarded words may be frightening for patients. Where possible, clinical discussions should take place out of the patient’s hearing range.

Anxiety, depression and post-traumatic stress disorder can complicate recovery from critical illness and professional help is important throughout the patient’s rehabilitation. Janet received counselling and support but it sounds as though her family did not. Nurses are ideally placed to build relationships with families and to recognise when additional support may be necessary. Involving the Chaplaincy team is an excellent source of family support and nurses can advise relatives to see their GP in order to access counselling and support services.

It’s easy to think that survival from critical illness is the end of the story, but chronic physical and psychological needs often persist long after the acute illness is over. Despite the severity of Janet’s illness her story demonstrates an incredible composure and resilience, and her reflections provide learning points for critical care teams everywhere.

Learning points

  • Presume that all critically ill patients can hear, even if they are sedated
  • Introduce yourself to your patient at the beginning of the shift and explain all clinical procedures before carrying them out
  • Do not talk over patients
  • Provide a supportive environment for patients and their families, referring to other experts as appropriate

Katie Scalesis a consultant nurse in critical care, anaesthetics department, Imperial College Healthcare NHS Trust, Charing Cross Hospital

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