“Had my concerns been taken seriously by medical staff, Lewis might still be alive today.” Simon Chilcott tells his son Lewis’s story

Summary

Lewis Chilcott was 23 years old when he died at Royal Sussex County Hospital in Brighton. In this blog, his father Simon describes what happened to Lewis and how his family was treated by the hospital following Lewis’s death. Simon continues to call for greater transparency in the investigation process and improvements to the way hospitals engage with bereaved families.

Content

Lewis’s seizure and medical crisis

My son Lewis was rushed to hospital on 16 June 2021 after a seizure at work. He had never had a seizure before and was an otherwise healthy 22 year old. He was intubated and spent 9 days in ICU at Worthing Hospital, at which point he was transferred to Princess Royal Hospital in Haywards Heath for a plasma exchange. 

That’s when things went badly wrong in Lewis’s care. The transfusion was delayed and, because Lewis had already been intubated for two weeks, a consultant decided that Lewis should be given a tracheostomy, a procedure where an opening is created at the front of the neck so a tube can be inserted into the windpipe (trachea) to help a patient breathe.[1] A few hours after the procedure, Lewis’s vital signs became worrying—he had very high blood pressure, a racing pulse and a raised temperature. 

Having been by Lewis’s side throughout his hospital stay, I knew that the tracheostomy was the only thing that had changed in his care in the past 24 hours. I asked the medical staff whether that could be what had made Lewis so unwell, but they said it couldn’t be the tracheostomy. They treated him for an infection, but he continued to deteriorate, so I asked again about the tracheostomy, only to have my concerns dismissed again.

Three days later, Lewis had a catastrophic internal rupture, followed by a further torrential bleed. He was transferred to the Royal Sussex County Hospital in Brighton, where amazingly surgeons managed to save his life. During the surgery, it was discovered that the tracheostomy device had sliced the top of Lewis’s innominate artery. 

Against the odds, Lewis was stabilised and remained in a coma in the ICU. In spite of everything, he was making some progress. Then a few days later, on 24 July 2021, we received a call to come into the hospital as Lewis had suffered another torrential bleed. This time, there was nothing the surgeons could do to save him as his innominate artery was so badly damaged.

Poor communication during the investigation process

After Lewis died, the doctors expressed their sympathy and told us that in two days we should expect a call from the hospital bereavement team, and that there would be an investigation into Lewis’s death. Lewis died on the Saturday, so when by Tuesday we hadn’t heard anything, I called the bereavement team. They simply told me, “We’re very busy, we will get to you when we can.” When I still hadn’t heard anything a week later, I got in touch with the Patient Advice Liaison Service (PALS), as I couldn’t face having a similar conversation with the bereavement team again. PALS said they would follow it up, and when I eventually got a response, it was the same: “We’re busy, you’ll just have to wait.”

As a family, we needed to know what had happened to Lewis and what the hospital was going to do about it, so I emailed the Trust CEO and various heads of department, but heard nothing back. After eight weeks, I managed to get a meeting with our local MP, who wrote to the Trust CEO. Two weeks later, I finally received a phone call from the hospital’s Patient Safety Executive who invited me in for a meeting. 

I attended the meeting expecting to hear the results of an investigation, but instead the conversation was about whether an investigation was needed. After some discussion, it was decided that Lewis’s death did meet the criteria for a Serious Incident (SI) investigation. A month later, the hospital sent me a copy of the draft investigation report. It was full of factual errors and missing relevant information. For example, it suggested that Lewis’s tracheostomy had become dislodged due to his seizures, but the only physical signs he had of his seizures were a dilating pupil and a slight facial contortion. I had been present throughout Lewis’s care and knew that some of the information in the report just wasn’t correct. 

I contacted the Patient Safety Executive to give my feedback. It later transpired that some key staff hadn’t been at the initial Morbidity and Mortality meeting to discuss Lewis’s case, which meant the report had been put together without the input of these individuals. They had to repeat the meeting and eventually we received an updated version of the report.

The hospital also commissioned the Royal College of Surgeons (RCS) to conduct a review, which found that Lewis’s tracheostomy had been inserted too low. However, the results weren’t taken seriously and the hospital continues to insist that there is no evidence that the device was inserted too low.

How the hospital engaged with us as Lewis’s family

In the two years since Lewis died, some hospital staff have been compassionate and communicated honestly with me, such as the surgeon who had performed the procedure to save Lewis’s life. It was helpful to meet him and hear how Lewis’s death two weeks later had affected him. The patient safety executive who worked with us was also very kind, but her role was limited by the information and input given to her by other departments.

Sadly, there were also some individuals who made the process and relationship with the hospital much more difficult. At one meeting, I broke down so we took a five minute break. When we resumed the meeting, one consultant told me, “You’re not the only one hurting.” I was shocked to be spoken to in that way. 

Fighting to ensure lessons are learned

Eventually, there was an inquest into Lewis’s death. The narrative verdict that the hospital’s barrister was arguing for was that Lewis “died from a necessary procedure.” However, the coroner eventually found that Lewis died because of a “rare but recognised side effect of tracheostomy.”

Right at the beginning, I told the hospital that I wasn’t going to go away until I knew the truth of what actually happened to Lewis. It is expected that patients will just take the investigation report and go away, but I can see so many missed opportunities for learning and accountability in the process. I was right there at Lewis’s side for the 39 days that he was in hospital and saw what happened to him. Had my concerns about his tracheostomy been taken seriously and looked into by medical staff at the time, he might still be alive today.

Sussex Police is currently investigating allegations of medical negligence at Royal Sussex County Hospital between 2015 and 2021, and I have submitted evidence about Lewis’s case to the investigation. My hope is that the hospital will finally take responsibility for Lewis’s death. There’s a lot of talk in healthcare about learning from errors, but you can’t prevent the same thing happening again if you don’t recognise that you got something wrong.

I want to make sure that I keep Lewis in the public eye so that the failures in his care don’t just get swept under the carpet. The hospital has moved on, but we can’t.

References

1 Tracheostomy. NHS website, last accessed 27 September 2023

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