Human rights issue – Families Matter

Hundreds of times, in waiting rooms outside Intensive Care Units I have looked into the eyes of sons and daughters, spouses and partners of patients, held their hands and said, “We did all we could. I am so sorry for your loss.”

When Saagar died, no one looked into my eyes and said that to me. They had not done all they could for him. The hospital carried out a sham investigation, a futile exercise in ‘being seen’ to be doing the right thing.

The GMC found everything to be hunky dory. The doctors ‘looking after’ Saagar had done their jobs to perfection. Just too bad the patient was dead. They did not deem Saagar’s case worthy of an investigation. GMC’s role in its own words:

We work to protect patient safety and support medical education and practice across the UK.”

The Coroner’s report shone some light on the holes in Saagar’s care. It clearly pointed out the things that South London and Maudsley (SLaM) Hospital got wrong.

  1. There was a general failure to identify the diagnosis on the discharge summary from the Home Treatment Team to the GP.
  2. There was a general failure to communicate thoroughly enough with the parents about the relapse symptoms, what to watch out for and where to go for help in the future.

Last June, I wrote to the CEO of SLaM, requesting an update on the changes that had been made in his organisation in response to the Coroner’s findings above. He said someone would get back to me and I heard nothing. This June, I sent him a reminder and again he said someone would get back to me and I am still waiting.

What are my rights as a parent? Is this too much to ask?

What were Saagar’s rights as a young man with a mental illness?

Are our lives not as important as anyone else’s? Black or white or brown? With Cancer or Diabetes? Or Bipolar Disorder?

Everyone deserves to be heard and seen. With respect.

It’s not charity. It’s a human rights issue.

Ref: Learning from deaths: Guidance for NHS trusts on working with bereaved families and carers

Heartbreak Syndrome

Screen Shot 2019-04-27 at 18.48.41

Carrie Fisher: Date of death 27th Dec 2016.
Her mother, Debbie Renolds’ date of death: 28th Dec 2016

Emiliano Sala: Plane Crash – 21st Jan 2019
(Death confirmed 13 days later).
His father, Horatio Sala’s date of death – 26th April 2019

Both these parents died of natural causes. Horatio Sala was only 58. For days after the crash, he was not sure what was happening. “Hours go by and I know nothing. It makes me think the worst. I know nothing. Nobody has spoken to me. Not a call from the Embassy, the club, from anyone.”

I cannot imagine how stressful that must be. After the ‘worst’ was confirmed, the investigation was a protracted one. Horatio’s angst is palpable on the video clips. The grief and anger of it must have caused a sustained and prolonged release of adrenaline which greatly raised his pulse and blood pressure, making his heart work harder, making his blood sticky and ruining his immune system. Research also shows that in the first 30 days after a loved one dies, your risk of dying too is significantly increased. There are many stories validating this finding.

More than a month after the crash a BBC report said, “Some operational aspects are yet to be determined, such as the validity of the pilot’s licence and ratings.” What must that do to a parent! “Air accident investigators will continue to look at all operational, technical, organisational and human factors which might have contributed to the crash.”

They will continue to look I am sure but for the bereaved families, there is no resolution till the investigation is complete. They don’t feel settled until then. They are haunted by unanswered questions. The big and noisy fight inside overshadows everything else. There is no sign of ‘peace’ for at least a thousand mile radius. A prompt, fair and proper investigation is essential for them to start grieving properly. Losing a child is bad enough. A parent should not then have to fight for facts and justice.

Sadly, even the medical profession does not understand sudden traumatic grief. Often the investigations are a sham, take forever and produce vague statements like the ones above. I know many parents whose suffering is insulted and prolonged for this reason. This must change. It breaks my heart and many others.

PS: Very sorry for the pilot, Mr Ibbotson’s death. The system failed him too. If he did not have an appropriate licence, the system did not stop him from flying.