Towards the end of last year I’d been working with a team from the BBC who were making a film about my Open Justice work. You can watch the end result here if you’re interested. One of the team connected me with Angela Marber.
I’ve only known Angela for about 8 months, we’ve not yet met in person, we’ve spoken on the phone and exchanged emails and let me tell you that she has presence. Angela is incredibly well-mannered and well-spoken, she listens and asks pertinent questions, attentive and inquiring, she is a force, and she is on a search for answers.
In our first conversation, Angela spoke with such a pride about her sons and their achievements in the arts. Angela and her former husband Brian, who died in 2018, had two sons, Patrick and Andrew. Patrick, is a comedian, playwright, director, actor and screenwriter. He is currently directing Leopoldstadt at Wyndham’s Theatre.
Andrew, younger by two years, was born in 1966 and was one of five founder members of Freewheelers Theatre and Media Company established in 1989. Andrew was also a playwright, director and actor and by all accounts a comedian too. You can watch Andrew’s friends describe him, and see Andrew performing, in this tribute video here:
One of his friends sums him up like this:
“He was an interesting chap when I first met him. He was – himself. If you’d never met Andy that’s what he was like. Quirky, crazy and just… full of life”.
Andrew, who had Noonan’s syndrome and autism, was admitted to St Helier hospital from his care home in February 2020. Angela stayed by his side 24/7 until he died, in a local hospice, 15 days later.
Angela kept detailed notes; she has copies of the contemporaneous messages and texts that she sent to family members and friends to update them. She has accounts from Andrew’s key worker and she wrote her own recollection shortly after Andrew died (in addition to her notes at the time).
Angela has vivid memories of Andrew’s time in hospital, and voice recordings of his laboured breathing that she has shared with me, but I’m afraid to say I’ve not found the stomach to listen to them.
Admitted to hospital on the 2nd February with a bleeding peptic ulcer, it sounds to me like Andrew endured a harrowing fortnight at the hands of the NHS. As ever, there are exceptionally caring individuals in Angela’s account, there are demonstrations of kindness and compassion, such as the gentle voice and kind manner of the doctor who:
“lulled Andrew into one of the few calm moments of his stay at the hospital. He felt important and cared for. Nevertheless you can hear constant loud clattering nearby. Unbearable for Andrew”.
Following his admission Andrew had two endoscopies, one shortly after admission, a second a few days later. Angela has concerns about how these endoscopies were conducted.
She can not recall if Andrew was starved before them both. She has a clear memory of him being fed chocolate croissants shortly after the first, and being nil by mouth for two days after the second. The first was conducted with twilight anaesthesia (conscious sedation) and the other under general anaesthetic. Angela was told there was less chance of infection with a full anaesthetic, so she is of course left wondering why that was not used on the first occasion.
Angela strongly believes that the end result was one, or both, of these procedures led to Andrew acquiring what is described in his hospital notes as a ‘severe hospital-acquired pneumonia’ less than a week after he was admitted.
The following is an extract from Angela’s notes:
An oxygen mask. Almost 100% needed. At last he can breathe slightly more easily.
Why couldn’t he have had oxygen earlier?
Imagine needing 100% oxygen and not receiving it. What would that feel like?
Two nurses arrive to change Andrew. They toss him around speaking to each other in their own language as he cries out. He was no more than a piece of meat to them. It was a scene I will never forget.
Thursday 6th February
We are about to be moved to intensive care in the early hours, after a visit from a doctor who impresses me with his plan to fight the infection and bleeding for two days after which, if unsuccessful, Andrew would be put on a morphine drip and float away.
He tells me that without the oxygen mask Andrew would be dead within two hours.
What I’m not told is that this is his last day on the ward and then he is off for a week.
Early that morning, before the move, after Andrew’s limbs were already so swollen that hardly any veins were visible he cried out in a strange dark voice in agony as his lungs flooded and twenty to thirty doctors surrounded his bed saying, at first, as they counted the drips, ‘fluid overload‘ and then ‘don’t mention fluid overload’ to each other. A kind doctor mouthed ‘sorry’ over the heads of the others. Down in ICU he was documented as fluid overloaded.
Drips I counted are: Anti-coagulant, Blood, Antibiotic – various, Paracetamol, Anti-acid, Saline and others.
8 in all.
How could this happen?
Angela informs me that she has made it clear to the Coroner that she believes the pneumonia that Andrew acquired in hospital was compounded by fluid overload, mentioned throughout Andrew’s medical notes, but not addressed in any of the clinician’s statements.
Perhaps the most distressing incident that Angela recounted in our conversations was Andrew, clearly in pain, anxious, struggling to breathe and now fluid overloaded, crying out in pain.
She recalls his shrieks of agony, that he screamed for David (his keyworker of twelve years) and declared that he was dying. How did the staff respond? We return to Angela’s notes:
“Not one of the watching doctors standing around the gastric unit suspected heart attack although his anguished cries could be heard all over the ward.
He was simply admonished for making a fuss.
“There there, no need to make such a noise” said a doctor.
“Sorry” he whispered.
How do you think he felt being asked to calm down and that there was nothing to make such a fuss about when he was in the throes of a massive heart attack – in fact a Takotsubo brought on by unbearable emotional and physical stress which I had just witnessed due to the fluid overload.
I was frantic for pain killer but the head honcho said he had to be assessed first as the others nodded.
Finally, a brave and determined nurse appeared and injected him with morphine without permission.
Angela describes how the hurt of not being believed or taken seriously stayed with Andrew until he died a week later. His heart attack was only discovered during a check-up once he had been moved to the Intensive Care Unit.
Overall, Angela paints a picture of a hospital in chaos, a lack of leadership, doctors disagreeing about how to proceed. All of this against a backdrop of blatant diagnostic overshadowing, and whether due to arrogance or incompetence, an inability to listen to Andrew, or Angela throughout.
Angela is convinced that Andrew’s heart attack was bought on by stress, as a direct result of the lack of any reasonable adjustments to Andrew’s autism by the hospital:
“as mandated by law… making his life a tense nightmare of continual changing of wards or beds within wards, of unbearable crashing sounds and flashing bright lights and clatter and people barging in and the loud voices of the nurses on the wards during the night and the uncaring way his body was tossed around whilst changing him and the constant beeping that could have been turned off by a nurse (assistants not allowed) but rarely was. They just walked past. It’s on tape. Above is much of the reason that Andrew needed sedation.
This non-stop stress for Andrew and the onslaught of the fluid overload led to his Takotsubo and all were avoidable.
I tried to remove him to somewhere more considerate of his needs but it was impractical. On our last day the wonderful palliative care team placed a flowered sticker on his door signifying peace for him.
Why couldn’t that have happened from the start? I would like to know”.
Andrew eventually left the hospital, moving to a local hospice, where he had a peaceful death a few days later.
Angela, heart-broken yet determined, attended Andrew’s inquest on the 7 October 2020, with a list of questions she wished to ask witnesses (having received support and advice from AvMA).
When we speak in early December she surmises that there was little point in her attending as her input was over in the first few minutes and her concerns were not addressed:
“No twist or turn was explored, as promised…then the sound failed on the screen so the inquest was adjourned”.
Angela explains how she was only given 26 pages of Andrew’s medical notes by the court, but after the first part of the inquest once she’d raised concerns, she was emailed access to a bundle of 359 pages. She is left confused as to why these were not sent to her before the initial inquest hearing.
Andrew’s inquest was rescheduled for St Patrick’s Day 2021, 17 March. This was then adjourned further, it seems in part because the Coroner was seeking additional expertise, perhaps Angela’s persistence was starting to pay off.
In email conversation with Angela she describes how she is feeling now:
“I’m 81years old, handling this alone, and ploughing through hundreds of written words, abbreviations and figures.
In the past month I have found myself unable to open Andrew’s files. I just can’t face it.
I met up with someone who had worked at Epsom Hospital and she impressed upon me that no-one is going to admit to the fluid overload or even to watching it happen as so many did”.
Tomorrow, Friday 13 August, Andrew’s inquest will resume. I’ll be attending court remotely and will report on what is found on this blog once the inquest is concluded. I very much hope that Angela’s search for answers will finally be over.
**Postscript** Andrew’s inquest was postponed on the morning of 13 August and rescheduled for January 2022. I hope to report from it then.