Florence Nightingale Foundation – Conference Feb 2014 Hard Truths: Listening to Patients and their Families

Joshua’s Story 27/10/08 – 05/11/08

We found out my wife was pregnant in early March 2008. The Pregnancy We found out my wife was pregnant in early March 2008. The pregnancy was perfect, as the due date grew closer, we got more and more excited. We found out we were having a boy and decided to call him ‘Joshua’ – this upset our 3 ½ year old daughter who wanted to call him ‘John’!

The Days Before the Birth….. On Monday 20th October, my wife and I were feeling really poorly, we had headaches, sore throats and felt generally tired and ill. On Saturday night (25th October), at about 9pm I heard my wife shouting in the bathroom. When I went to see what was wrong, she told me she thought her waters had broke. This was nearly 3 weeks away from the due date. Over the next 2 days, we visited the maternity unit twice, each time were told to return home and wait for the contractions to start.

The Birth My wife started to have painful contractions at about 5.30am on Monday 27th. We phoned the ward and were told to wait until the contractions became more regular and intense. This seemed to happen very quickly. At about 6.15am we phoned and informed the ward that we were coming in. We arrived at the hospital at about 6.30am. The contractions were very painful and intense. At 7.38am, Joshua was born.

Hoa’s Collapse… Soon after the birth, at around 8am, my wife collapsed with pyrexia, caused by an infection (later confirmed to be pneumococcus). Her blood pressure also collapsed. We were left in the room alone at the time, and after I while, I took Joshua in my arms and went out into the labour ward to ask for help. My wife was eventually given fluids and antibiotics. Whilst my wife was recovering on the bed, we expressed immense concern for Joshua and asked if he too, needed to be on antibiotics. I was very surprised to be told that he didn’t. This seemed counter-intuitive to me but I had no choice but to trust what I was told. The midwifes were totally dismissive that anything could be wrong with Joshua.

Postnatal Care Throughout the day and night we were told that Joshua’s temperature was too low. On at least 3 occasions he was transferred to a different cot with some form of heating. During each period of heating, Joshua’s temperature recovered only to drop again when he was returned. I was re-assured because we thought that if Joshua had an infection, his temperature would be higher and not lower. Before I left for the night, a member of staff reassured me that this was the case. In the early hours of the morning (around 2am), my wife was so worried about Joshua’s breathing, which was so laboured he was ‘grunting’ she called the emergency bell by her bed for help. Joshua was taken out the room for over 30 mins and looked at by the midwifes who reassured her yet again, that Joshua was fine. A paediatric review was not requested.

Joshua’s collapse Joshua remained in the care of the postnatal ward until 25 hours following his birth. At this time, Joshua had never been seen by a paediatrician. 25 hours after his birth, my wife spotted Joshua collapsed in his cot, blue with bubbles of saliva around his mouth. She called a midwife for help and Joshua was taken away. His battle for life then started.

After Joshua’s Collapse I received a phone call from the maternity ward at around 9am and was told that Joshua was having problems and that my wife was very upset. When I arrived, Joshua was breathing with his own lungs. Whilst we were in the room with him, he sharply deteriorated and was transferred to full ventilation. We were told that our son had most likely collapsed due to a heart defect and he was being treated with heart medication and antibiotics.

Intensive care Joshua was initially transferred to Manchester where he spend a night, where he was diagnosed with overwhelming infection to his lungs (pneumococcus), the same organism found in my wife. He was then transferred to Newcastle where he was placed on ECMO.

ECMO When we arrived at Newcastle, Joshua had been successfully transferred to ECMO. We were told upon arrival that he had an 80-90% chance of survival. Joshua was very brave, he often opened his eyes when he heard our voices. He could squeeze a finger when placed in his hand.

Joshua’s death Up until 3rd November, Joshua was doing very well on ECMO. All the feedback we had been given was that Joshua’s lungs were recovering and that his prognosis was good. We were told that he was likely to have neurological problems and that these could be anywhere from mild to severe. We came to terms with this and just wanted to take our boy home. On the night of 3rd November, the staff attempted to wean Joshua from ECMO. At the latter stages of weaning, Joshua began to bleed from his left lung. This was a disastrous development as when a child is on ECMO, heptin is used to stop blood clots outside the body. This makes any bleeding very serious. Over the next 2 days, Joshua’s condition deteriorated. Joshua’s struggle for life became ever more desperate. On the 5th November 2008, around midday we were told that Joshua’s bleeding was too severe and it was time to turn off the ECMO machine. In tears we agreed to let Joshua go. I begged the doctor to ensure that Joshua went without pain. We knew our beautiful boy was passing away. A short while later his death was confirmed. Joshua had bled to death.

What happened next… Around a month after Joshua’s death, we were informed that the key record of Joshua’s care, the yellow “observation chart”, which turned out to be the only record of Joshua’s monitoring prior to his collapse had been “lost”. Despite “extensive” searches, it has never been found.

Inquest Trusts investigation was inadequate PHSO refused to investigate Went back to Coroner In April 2010 an inquest into Joshua’s death was finally opened. In June 2011, the inquest was finally held. 10 failures were identified, including…..

Failure to listen to and understand the family’s concerns; Failure to monitor the signs of infection in Joshua; Absence of continuity of care before and during the birth; Failure by all staff to acknowledge that  the midwives were working as a separate team and that there was no integration between the midwifery and paediatric teams; Failure to identify that the unit was short staffed on that day; Inadequate, or no, training for midwives on the post-natal ward to carry out observations.

The inquest confirmed that Joshua’s chance of survival had he been given antibiotics earlier in his care was at least 90% Joshua’s death could have been prevented with a single dose of antibiotics

Key Learning Points? Neonatal infection, signs and need for early paediatric assessment Multidisciplinary teamwork/communication is a vital part of patient safety Need for honest and robust investigations following serious untoward incidents

The value of Patient Stories

“…it is unethical to allow a patient to be injured, and it is doubly unethical to allow another patient to be injured in the same way…” Don Berwick, MD

Patient Stories Personal - connects actions/behaviour s to real consequences Provide context or narrative Encourage conversations, reflection and learning Speaks to organisational values Reinforces safety culture in individuals and organisation To err is human, but we can learn from experience

A poem from the construction industry… I could have saved a life that day, But I chose to look the other way. It wasn’t that I didn’t care, I had the time, and I was there. But I didn’t want to seem a fool, Or argue over a safety rule. I knew he’d done the job before, If I called it wrong, he might get sore. The chances didn’t seem that bad, I’ve done the same, he knew I had. So I shook my head and walked on by, He knew the risks as well as I. He took the chance, I closed an eye, And with that act, I let him die. Now every time I see his wife, I’ll know I should have saved his life. That guilt is something I must bear, But it isn’t something you need to share, If you see a risk that others take, That puts their health or life at stake. The question asked, or thing you say, Could help them live another day. If you see a risk and walk away, Then I hope you never have to say, But I chose to look the other way ‘I chose to look the other way’ by Don Merrell

Summary Health care is inherently risky - human beings make mistakes! Sometimes mistakes have tragic consequences Patient Stories connect behaviour and actions with real consequences for real people They enable learning and give the patient experience No one wants to the person who could have made a difference and didn’t! Understanding the patients perspective when things go wrong is a valuable tool in fostering a good safety culture