We lost our son Owen on May 24th 2012 aged 8 years.
Owen had been diagnosed with brittle asthma in 2006. Brittle asthma is a type of asthma which is difficult to control and the patient often experiences a sudden onset of symptoms. Despite his condition he was a normal little boy who loved football and swimming, he was always on the go. Although regularly in and out of hospital, he had never spent more than 2 nights in hospital for each episode and had never required intensive care.
On the morning of the 23rd of May we took Owen to see the GP as he had a difficult night, coughing and wheezing (even though he successfully completed his 50m swimming badge the evening before). He had an audible wheeze; you could see his chest working overtime, and his oxygen levels were in the high 80s. He was immediately nebulised and a course of steroids prescribed and administered. He responded well to the treatment and was soon bouncing around the surgery so after about 45 minutes of observation it was agreed with the GP that he could go into school. By 10.15 Owen had been safely delivered to school and the staff (who had taken time to understand his condition) were advised to contact us if his condition worsened.
At 1.15pm the school asked us to collect him and we took him to our local A&E department (as we had many times before). Upon assessment at A&E Owens symptoms satisfied the British Guideline criteria for acute severe asthma. He responded positively to the administered treatment and a further assessment at 2.30pm showed his condition had improved and was in the moderate asthma exacerbation category. We were happy with the quick response at the A&E department and we were not worried when they advised he would be admitted to the paediatric ward for observation.
It took 2 hours to move Owen on to the ward and during that time (whilst waiting in A&E) his condition again started to deteriorate but no action was taken. Upon arrival on the ward it was clear that they were very busy and overstretched. A nurse quickly looked over Owen and noted he was coughing, tight chested and extremely anxious. The nurse immediately administered a nebuliser and a Junior Doctor briefly reviewed Owen at 4.40pm and made a diagnosis of an acute exacerbation of asthma with a psychological element and requested a review by a Senior Registrar. Owen was very anxious (as we tried to explain to the doctor) he really did not want to be in hospital, he was worried that he might die and was absolutely petrified that they may try to take a blood sample (he was very scared of needles after a particularly bad experience with a nurse who really struggled to find a vein). He had only just begun to understand his condition and he wanted to be just like his friends.
By 6pm the senior review had still not taken place. Owen had received no further medication and his condition was deteriorating. We continually chased the nurse for the review and after a discussion we administered 10 puffs of his inhaler and the Senior Registrar was chased up. The nurses did not seem over concerned at this point; they had seen Owen in this state on my occasions. I felt every time I approached them that there attitude was “its only Owen we’ve seen him like this before and know that he will bounce back” At 6.30pm the review eventually took place and it was confirmed that he would be kept in overnight for observation and to monitor the frequency of his inhaler use and cough. Nebulisers would only be administered if required.
We were very disappointed with this review as it occurred just after Owen had had medication administered, so we didn’t feel the attending doctor appreciated how Owen had been presenting. We tried to explain this but were ignored. We also felt that he required more intense treatment as it was obvious that although he was responding to the medication upon administration, its impact was only short lasting.
By 7.30pm Owens condition showed an acute deterioration. The nurse administered a nebuliser (although his medical records show that only 1 of the 2 medications prescribed was actually given). The doctor was not advised of the deterioration in Owen’s status. Owen was then asked to walk down two flights of stairs with only his dad to have a chest X-ray (at this point in time his observations were consistent with an acute severe asthma attack). Upon returning to the ward the nurses advised that either my husband or I needed to leave as only 1 parent was allowed to stay on the ward. My husband was reluctant to leave as Owens condition did not appear to be improving but the nurse assured us they were not concerned, they had seen Owen in this state previously, he was only in for observation and he would be home in the morning. David said his goodbyes and Owen repeatedly asked him if he was going to die. David’s last words to Owen were “stop being silly, of course you’re not going to die”.
By 8.45pm I and the nurse were getting more worried about his symptoms. The nebulised therapy had only been administered an hour and 15 minutes earlier and yet he was getting worse. Owen was incredibly anxious so much so the nurse took me aside and advised that Owen needed to calm down. She also advised that she had requested an urgent doctor review. I sat with Owen and was desperately trying every technique (including bribery) to calm him down. I could see how hard he was struggling to breathe and kept chasing the nurse to get a doctor to him immediately. I even considered taking him home because at least there he would be calm, we had access to the equipment and medication required and I could try and cool him down it was the hottest day of the year, the ward had no air conditioning and the windows barely opened, he was stipped down to his pants and he was seriously overheating. I telephoned my husband as I was becoming anxious that the hospital environment was making Owen panic, but we agreed that the hospital was the best place for him and the staff knew what they were doing.
Whilst waiting we were left on our own on ward with no interaction with any staff and more importantly no treatment. At 10pm (75 minutes after the nurse advised he needed an urgent review) the doctor finally came to examine him (we have since learned that she made the decision to attend a ward handover (shift change) and only saw Owen as part of her rounds at the start of her shift). I was pleased to see it was a doctor who we knew and had seen Owen on previous visits. By this point Owen showed marked signs of respiratory distress, his respiratory rate had risen from 32 to 40 in 2 and a half hours. He was immediately prescribed back to back nebulisers, oxygen supplementation and additional steroids. I remember thinking at last they are taking this seriously. Sadly we have since discovered that the medication administered after this review was not what was prescribed. Owen was given nebulisers at 10.30pm, 10.40 pm and 10.55pm (first medication given since 8.45pm). By 11pm I was very worried that Owen did not appear to be improving so when the nurse told me he was being moved to a bed closer to the nurses station so they could keep a better eye on him I was relieved (we have since discovered he was actually moved to the High Dependency Unit).
Upon admission to HDU the nurse noted he was struggling to breathe, panicking and hyperventilating. They hooked him up to oxygen and they left us for 45 minutes with just a hospital volunteer. By this point I was getting increasingly anxious,, there was no improvement and no action or treatment, I kept peering out into an empty corridor begging the volunteer to fetch someone and to do something. I rang my husband and asked that he returned to the hospital immediately.
At 11.45 pm the doctor came to review him (45 minutes after the last of his medication was administered). His condition had continued to decline. I could see how hard he way trying to beath, I was very frightened. The doctor advised that he needed to be cannulised. I told them again that Owen was needle phobic and as expected the moment she went near him with it he started to panic. It was decided by the medical team that it was in his best interests to stop as it wasn’t helping in the short term.
He was given another nebuliser. At midnight Owen was given an adrenalin nebuliser. I was sat on the bed holding him in my arms when he ripped the mask off. He breathlessly announced he couldn’t breathe and then I felt him go rigid, his eyes rolled into the back of his head. Owen had gone into respiratory arrest.
I was bundled out of the ward (quickly followed by 2 other parents and their children who did not want to witness the events unfolding). My husband arrived shortly afterwards. We did not really understand what was going on and we were taken into a treatment room (with only 1 plastic chair and a bed) and left on our own. The 40 minutes in that room will stay with us for the rest of our lives. I remember my husband repeatedly asking what had happened, both of us promising anything and everything just for Owen to be ok.
We knew that something had gone terribly wrong; Owen had been admitted many times with symptoms much more severe than those he had presented with that afternoon. At 12.50am we saw a group of doctors and nurses walking towards the door. At that point I knew he was dead. A doctor we had never met came in and told us how sorry he was and that there was nothing more they could do and they had declared his death.
Within 48 hours of his death we set about trying to find out what had happened and why. Getting answers was our way of dealing with things and meant we had something to focus on rather than the numbness we felt. We both felt we had let Owen down and blamed ourselves for trusting the nurses and doctors at the hospital.
We were pleased an inquest was opened and adjourned. 3 weeks after his death we finally had a meeting with the hospital. We had hoped that this meeting would be an opportunity to meet with the doctors and nurses that treated him and to find out what had happened. Sadly not a single member of staff working that night turned up at the meeting, instead it was with his consultant (who he had not ever seen in an emergency setting, and last saw Owen 6 month’s earlier in clinic), the head of Paediatric medicine, the wards Matron and the PALS Manager.
The meeting was a complete waste of time. It was implied that because of Owens brittle asthma diagnosis his death from this condition had been inevitable (something which had never been discussed with us, and in fact his consultant had reduced contact because he had stated at the previous clinic his condition was improving and was better) . It was also suggested that Owens needle phobia had caused his death; his refusal to be cannulated had meant they had been forced to adjust the treatment plan. This assertion made us so angry, if we had known it was a life or death situation we would have held him down if necessary (the response was unbelievable: restraint was against his human rights – who knew 8 year old boys had the right when scared and at deaths door to refuse medical help?).
We informed them of our concerns and they flatly refuted that Owens treatment had been anything but first class. The only positive from the meeting was an agreement that a root cause analysis report would be produced and shared with 6 weeks. Soon after this meeting the hospital closed its doors on us, refused any further meetings (even with the intervention of the MP).
3 months after we met with them we received the root cause analysis report. It highlighted several failings; a failure to monitor and use the paediatric early warning system which would have shown his failure to respond to medication for any length of time, failure to alert the on call consultant, a shortage of nursing staff (only 1 qualified nurse and 1 student looking after 11 children, including 4 in HDU), and the right tube for incubation on the resuscitation trolley was unavailable meaning a an inferior tube was used until they could locate the correct one. When we received this report we experienced 2 distinct emotions; we were devastated his care was below standard and felt anger that it happened. No apology was sent with the report, no explanation and no offer to meet and discuss.
The inquest was held 11 months after Owens death. . The coroner was unable to secure the evidence of the treating doctor as she had left the country (she refused to attend and submitted a single paged A4 statement a week before the inquest written without his medical notes). The hospital also failed to secure a statement before she had left the trust. The coroner refused to seek independent medical opinion, instead relying on the statements and evidence of his consultant (even though he did not see Owen during his time in hospital). Owens death was recorded as “natural causes” and the coroner actually went as far as to praise the care Owen had received. We find the outcome of the inquest astonishing. We still have so many unanswered questions.
Since the inquest Owens care has been reviewed by several medical experts and over 20 serious breaches of duty of care have been identified and in their opinion contributed to his death. It was devastating to hear that the experts considered that if the care plan implemented had followed the National British Asthma guidelines (which the hospital had signed up to) and he had been monitored proactively then Owen would have survived this exacerbation and be with us today. The NHS is now reviewing these breaches and we are still hopeful they may sit down with us and answer our questions and acknowledge their failings.
We had hoped that the root cause analysis report the hospital produced would have been a driver for change to stop this happening to another family. Sadly, an unexpected inspection by the Keogh review in May 2013 found the paediatric resuscitation trolley was still missing vital equipment.
As a family we are determined to make the NHS listen to our concerns and implement changes to ensure it can never happen again. We are not looking to attack the NHS; Owen had received fantastic care from the NHS throughout his short life up until this his final admission. We truly believe the staff on duty that night were massively overstretched and basics were missed as a consequence, this combined with an under appreciation of the severity of his symptoms (confused with patient anxiety), proved fatal for our precious only child.
Rowena and David Jeremy