Billingshurst dad 'robbed of time to grieve for his son' pressing for NHS improvements

Lewis Chilcott was admitted to Princess Royal Hospital in Haywards Heath suffering from seizures in June 2021 and was put on life support.

A tracheostomy, which involves creating an opening in the neck so a tube can be inserted to help patients breathe, was carried out on July 1, but days later he suffered an arterial haemorrhage as a result of the procedure, which was then repaired during life-saving surgery at Brighton’s Royal Sussex County Hospital.

The family thought Lewis had turned the corner for the first time when 38 days after being admitted to hospital he regained consciousness and during a short conversation managed to tell his dad Simon he loved him.

But the next day he suffered another rupture and died on July 24.

An inquest was held over four days at the start of December in Chichester, with area coroner Joanne Andrews recording a narrative conclusion.

It said Lewis died from damage to his innominate artery caused by a rare but known complication of his tracheostomy procedure.

While Simon praised the efforts of doctors and nurses for their care of Lewis and their efforts to save his life, he has criticised University Hospitals Sussex NHS Foundation Trust (UHSx) for a 'lack of openness and transparency' after his son's death.

The family were not contacted for the first ten weeks, requiring the intervention of Horsham MP Jeremy Quin and Healthwatch.

Simon then had to push hard for a Serious Incident (SI) report to be carried out, but even this has required a number of revisions as the family believe at various points they have not been given the truth and when they were it was sometimes watered down, with vital information often missing.

This includes the trust sticking to its original account for eight months that the tube in Lewis' neck had slipped due to seizures, when in fact it had been placed lower down than doctors had originally intended.

A fifth version of the SI report is now being drafted, while the Royal College of Surgeons (RCS) had to be called into to provide an independent report.

Lewis' family had hoped the inquest would provide them with some closure, but they say the approach taken by UHSx through its appointed barrister, gave them the impression its priority was to protect its own image, but it is standard procedure for NHS Trusts to be represented in this way.

Simon's goal is now to work with the NHS to improve patient safety and ensure no family goes through the traumatic experience they had to endure after Lewis' death.

He said the way their case was handled had 'robbed him of his time to grieve', adding: "We have lost my son and it's my absolute lifetime goal to make sure Lewis is never forgotten in the NHS."

He is working with the trust on improvements, but believes these must be fully implemented and acted up and not just paid lip service to.

Simon also wants to see greater acknowledgement of the recommendations made in the RCS report and would like to see changes to the standard operating procedure for tracheostomies.

He added: “On behalf of my wife Lou (Lewis' mum) and Lewis' sisters, Jess, Hannah and Briony, we really want to thank from the bottom of our hearts the following people: Katie Weston, Healthwatch, Jo Habben, director of patient safety, Kellie Bryan, patient safety, Cameron Davies-Husband and Ishtag Amhed, both surgeons performed life-saving surgery to Lewis.

“We also wish to thank Jonathan Hyde, Simon Watts, Robert Kong for going above and beyond in trying there very best to save Lewis the second time he suffered a catastrophic bleed. And also to the nurses for their amazing care of Lewis.

“Lewis was our only son. We were all so proud of Lewis. He worked hard as a mechanic and was liked and loved by so many.

“He literally had this ability to light up any room he walked into, the fact that over 200 people attended Lewis' funeral shows us just how popular Lewis was and still is. All his friends talk often about Lewis and some were even brave enough to attend Lewis' inquest.

“We all miss Lewis every day and personally I really do hope that one day we will be together again. Listening Engaging With Integrity and Support – The Lewis Approach To Patient Safety.”

Jo Habben, director of patient safety at the trust, said: "We wish to send our sincerest condolences to the Chilcott family and apologise for the initial delay to our communication with them and the investigation process that exacerbated their distress at such a difficult time.

"Lewis' death was caused by a rare complication that we are determined to learn from. We will be updating HM Coroner and the Chilcott family soon on all the actions we have taken following our thorough patient safety investigation and the external review we commissioned from the Royal College of Surgeons."