In the immediate aftermath of losing William before we really understood the true consequences of how and why he died, I searched everywhere for the answers. When I received William’s post-mortem report a paediatrician came to visit me to explain the content. At best this was a summary – it didn’t really tell me what I wanted to know. I wanted to know how the pneumonia had taken hold, I wanted to know how long the abscess had been in William’s lung and which lobe it was in and how this might have affected his airway. I wanted to know the thickness of the fluid that had engulfed his tiny little chest. I wanted to know the strain of bacteria found in his lungs, ears, chest and blood. I wanted to know how that strain of bacteria affected his organs. I wanted to understand. I didn’t want to be placated with answers that were formed in such a way that they caused less hurt. Tasked with a job that no one would envy, what those who were in direct contact with me didn’t realise is that there is nothing you, or any report could ever say that could ever lessen the hurt. Carefully constructed sentences, they don’t work. Summarised reports, also don’t work. They do nothing to satisfy my desire to truly understand. It is not as though I have just taken my pet to the vets and a simple explanation regarding their illness will suffice. My child died; but one thing that must be understood is that bereaved parents do not need to be spoken to in a way that you might explain something to a child. Subsequently I called and spoke to the pathologist; it was my only choice. Did I want to speak to the man who had handled my child’s body in such a cold and brutal task; no. But regardless, he had seen William, he had understood, he was the man who was able to extract all the answers I needed.
When William died at home, we were taken to hospital by ambulance. An ambulance that had blocked our one car road. Traffic was queueing, but the paramedics didn’t move their ambulance. They did not rush us. They went at our pace. They allowed me to carry my baby in my arms out of his home for what would be the last time. As we reached the road, faces of the waiting motorists said it all. A subtle head shake as they bowed their heads in respect. The paramedic sat in the ambulance and cried with me. A man, a father, a real person, how did he feel? The worst, most tragic part of his job. When we arrived at hospital they waited until I was ready to carry my baby into resus. They stayed with us until we were ready for them to go. We weren’t a ‘job’ to them. William was carefully cradled by them, and treated with the dignity he deserved. Their demeanour our only solace of feeling secure in a situation that had completely shattered our world. They allowed me the space to lay next to William on his nursery floor and scream, beg and plead with him to wake up, knowing full well that he never would. They were human. They cared and their compassion will never be forgotten.
The process, which is the only word that can be used to describe what happens after a child dies is distant, impersonal and one that does not fill you with reassurance.
Once the initial ‘buzz’ has faded and you are left with nothing but a post-mortem report that explains how your child’s world ended is the time when the most support is needed. Simply put, you don’t get it, not unless you come to the attention of the mental health team – which I did. It shouldn’t take an attempt on a life to get the help you need. Losing William isn’t a one time event that slowly gets better over time. Every day deals another blow. Another day when the sun rises but no hope comes with it. It doesn’t get better with time, in time I suppose you just somehow live with ‘it’. You don’t learn how to live with it. You just ‘do’. What other choice do I have? For me, I wasn’t satisfied. I knew that William shouldn’t have died – his post-mortem confirmed that. But I would now have to wait another 5 months before the inquest would take place. 5 months. 5 months is a long time in an average life but not in the life of someone who counts every day, hour, minute and second, each of which plays out like an eternity. I couldn’t wait, and I wouldn’t wait. So my journey of investigation started.
I started by familiarising myself with NICE guidelines, which further progressed onto the British Medical Journals – which I had to pay for. I researched studies that took me around the globe and spoke to specialists from all walks of life. But I begun by weeding out the direct contact details of the leading paediatric respiratory specialist in the UK. Everything had to be dealt with objectively; this was the hardest part – I mean how do you stop writing, talking and generally acting in a way where you’re not falling apart. I still don’t have the answer to that. Everything had to be neutral, unbiased, constructive and without blame. I wanted the truth not a played down version to somehow make me feel ‘better’, I knew I would never feel better. When the responses from the specialists started arriving in my inbox or answer phone the story became alarmingly obvious, startlingly clear and horrifyingly obvious – William should never have died. Most importantly I spoke to paediatric respiratory, microbiology and sepsis specialists. Consultants that have spent years working in one specific area. Not a generalised approach. As the inquest approached I had the facts I had sought. In the meantime the doctor’s surgery who had ‘treated’ William had opened and closed a Serious Event Audit. Which we hadn’t been informed of until we were sat in the inquest. How can the general practitioners have a meeting and close an audit when they have not even discussed William’s care and concerns with us, his parents? I would find it very interesting to see the results of their initial SEA, which was closed after no failings were found, to compare that to the NHS England report that later detailed failing after failing. When I first heard news that a SEA had taken place but I’d heard nothing about it, I really sat down to think how I would approach this. Because clearly if I rolled over and took everything at face value I would get the duty of candour but I wouldn’t have answers.
Who, what, when and where is the easiest way to explain an inquest. Who died? What did they die of? When and where did they die. To assist with answering these questions they bring in a paediatrician. Not a specialised one, a general one. So, immediately I was concerned. How can a general paediatrician who has no experience of empyema and pleural effusions confidently ascertain and answer questions in relation to William’s death. Simply put – he couldn’t. An expert in his field, but an expert in the areas that contributed to William’s death he was not. He was able to conclude that had William had different treatment to what he received it was highly likely that William would have survived. That was all we needed for an NHS England investigation to be opened. Unless you bring your own specialists at your own cost, you get what you’re given. The paediatrician that we had come to Cornwall 3/4 times a year for a day. That’s how many days they allow for inquests into baby’s deaths in Cornwall. We were allotted 2 hours for William’s inquest – it lasted 8. How the family’s waiting behind us felt I will never know.
With my knowledge about how investigations are handled I suspected it wouldn’t be an easy ride – it wasn’t. However, throughout the investigation I was involved in every step. Perhaps because I was a constructive nuisance, I was persistent, and I wouldn’t accept answers that I felt were flawed or were not relied upon with justifiable evidence. Eventually after several hundred emails, multiple drafts of the report, and numerous meetings, the report was finalised in January – a report that I was satisfied with and reflected the truth accurately. A report that highlighted multiple failings in William’s care, from each GP we spoke to, the 111 help line and out of hours doctors. Ultimately if William’s chest infection had been diagnosed appropriately and not as a viral infection – he would have received much-needed antibiotics. If that chest infection had been treated the progression of pneumonia would not have happened, leading to a pleural effusion, lung abscess and the sepsis that would take his life.
I have lost count of the number of times I have been asked to point the finger, or blame, or speak in a manner that puts the spotlight on certain people involved. I have no desire to do that. Those involved have apologised, face to face and they have been held accountable for their mistakes – after all – unless they were living in a cave during the first part of this year, it was a bit hard to miss the media. I have met face to face with the GP that last saw William for what would be the last time, the doctor that should have sent William to hospital. I have looked in his eyes and told him how Paul and I feel. I have been asked if I will take our complaint to the GMC, phrases such as “shouldn’t he be struck off?” For me, to take such action, would be to prevent him from potentially saving another life. Those that went into work each time they saw William didn’t act in a malicious way, they didn’t allow William to die on purpose. They are aware of their mistakes and the systems that allowed for those mistakes to take place are being changed. I hope that those involved in William’s care will not make those same mistakes again. Their index of suspicion has changed, their threshold for prescribing antibiotics has lowered especially when it is clinically evident they are required. Their awareness of sepsis has been refreshed in the most devastating circumstances. I do not want my life to be consumed by hate, anger, and regret. To seek revenge on those involved would not honour William’s memory in the way that he deserves; and it would not bring William back – and that is all I want.
There are faults that lie within the NHS – some of which I have encountered. Those of which I have I’m sure, I could think of a better way they could operate. I’m sure many of them could be rectified with an endless pit of money – which the NHS simply does not have. But the NHS is built on foundations of compassion by those who go to work to do good, to do their best to help a patient to feel better, make their lives easier and with dignity. There are some of course who do not, there are always bad pennies, but thankfully they are far and few between. I have had my own negative experiences with my own treatment and miss-diagnosis in the past. But if it wasn’t for the NHS I wouldn’t be here – twice my life has been saved. If it wasn’t for the NHS, William wouldn’t have been born. The NHS did not cause my son to die – decisions of specific people did.
An eBook of 50 illustrations donated by 50 world class illustrators has been created in William’s memory. The book includes a foreword by me and Ron Daniels CEO of the UK Sepsis Trust. There is also a little game that you have to find William painting within the book. The book costs no more than £1.49 with all proceeds being donated to the UK Sepsis Trust in William’s memory. Please support us and buy your copy here.