'Who do we not save?'
Susan Sullivan won gold at the Special Olympics but when, shortly after the first lockdown, she was rushed to hospital with Covid-19, her Down's Syndrome marked her out as 'not for resuscitation'.
When Susan Sullivan was born with Down’s Syndrome, her parents were told their daughter was unlikely to crawl or walk. But Susan not only learnt to do both those things, she went on to compete at the Special Olympics, winning a suite of medals for swimming in the 1980s and 1990s.
“Susie was a fighter”, says John Sullivan, Susan’s father. “She won gold, she won silver, she won bronze. You don’t do that unless you’ve got determination.”
But on March 27, 2020, four days after Boris Johnson belatedly declared a national lockdown to prevent the NHS being overwhelmed by coronavirus patients, Susan was rushed to Barnet Hospital in north London, complaining of stomach pains. There, the 56-year-old was diagnosed with Covid-19 and given an oxygen mask to aid her breathing. But Susan struggled to tolerate the mask and 28 hours later she was dead.
It has taken John, who suffers from a rare neuroendocrine cancer, and his wife, Ida, three years to piece together what happened to their daughter while she was in the care of the Royal Free London NHS Foundation Trust. Their inquiries, which are backed by an investigation by the trust into the circumstances surrounding Susan’s death, make for shocking reading.
‘Not for resuscitation’
They show that when Susan, who was fitted with a pacemaker in 2016 to regulate a faulty heart valve, developed breathing difficulties, she was denied access to intensive care because of her Down’s Syndrome and what a medical registrar termed “cardiac comorbidities”. Susan was also deemed “not for resuscitation” despite Ida’s express wishes that her daughter should be resuscitated should the need arise.
In its Special Incident Investigation (SII) report into Susan’s death, the Royal Free admitted that the fact that she had been fitted with a pacemaker “would not be exclusion factors for ITU”. It also found that Susan had not seen by a consultant until 20 hours after her admission to A&E (NICE guidelines state patients should normally be seen within 14 hours), and that Barnet had been at fault in not granting her statutory right to reasonable adjustment by permitting a family member to be at her bedside.
Had Ida, who had previously been allowed to accompany Susan to A&E, and their son Clifford, who was permitted to see Susan moments before she died, been allowed into hospital to advocate for her and support her care, John believes the outcome would have been very different.
“Had her legal right to reasonable adjustment been allowed during that critical 20-hour period there’s no reason she would have been in a critical condition the following morning and she would have kept that oxygen mask on”, he says. “People don’t realise how important this refusal of reasonable adjustment was.”
What makes Susan’s treatment particularly baffling is that when she was first admitted to Barnet the medical registrar recommended she be considered for ITU if her condition showed no improvement, only to reverse his decision three hours later, citing Susan’s supposed cardiac comorbidities
“How can being Down’s Syndrome be a justification for denying ITU and thereby denying a chance of life… and how can a pacemaker be a comorbidity?” asks John.
It’s a good question.
John suspects that Susan was the victim of medical bias and a clinical frailty scoring system designed for able-bodied adults rather than people with learning disabilities. According to the Health Foundation’s Covid-19 Impact Inquiry Report, people with learning disabilities were between three to four times more likely to die from Covid than the non-disabled. And a report by the Learning Disabilities Mortality Review Programme found that almost half those who died from Covid-19 did not receive good enough treatment and 81% had a Do Not Attempt Resuscitation (DNAR) notice on their files, compared with 72% of those who died from other causes.
“A frailty index says, basically, here’s a guide to help you make decisions as to who should get life-saving treatment and who maybe who should not,” explains Kamran Mallick, the chief executive of Disability Rights UK, who has come across several similar cases of disabled people having DNAR notices imposed without their permission. “I would be arguing that this is part of the reason why in Susan’s case, despite being told that we want you to attempt resuscitation if needed, it was not carried out.”
The report into Susan’s death comes as Baroness Heather Hallett, the chair of the UK’s public inquiry into Covid-19, begins taking evidence on Britain’s preparedness and resilience for a pandemic and the impact of the pandemic on health systems across the UK.
Lady Hallett has promised the bereaved they will be “at the heart of the inquiry”. But, to date, she has permitted testimony from only one member of Covid-19 Bereaved Families for Justice, the largest grouping of the bereaved which campaigned tirelessly for the inquiry. Instead, Hallett has invited the bereaved to share their experiences in a parallel forum known as the Listening Exercise. This has infuriated John and Ida who point out that the Listening Exercise is run by private contractors and does not have the power to grant them legal assistance.
“Lady Helen thinks that she can't learn anything from us people at the coalface,” says John. “We're still living with it day after day after day. If it wasn't for bereaved families for justice, there wouldn't be an inquiry.”
“If she needed it, we would want you to”
The Sullivans’ ordeal began on March 26 when Susan complained of stomach pains. The following morning, the Sullivans dialled 999 but the London Ambulance Service was overwhelmed with emergency calls and it took seven hours for paramedics to arrive at the Sullivans’ home in Edgware, north London.
At around midday, Susan was admitted to the resuscitation area of Barnet Hospital accompanied by Ida who had travelled with her in the ambulance. On arrival a doctor asked Ida if Susan had a DNAR notice in place. Ida replied: “No, it’s never come up. And if she needed it, we would want you to.”
That was the last time Ida would see her daughter alive. By now Susan’s breathing was laboured and she was given high-flow oxygen via a face mask. A chest X-ray confirmed doctors’ worst fears: Susan had Covid pneumonia. At 12.37pm a medical registrar recommended she be referred to Barnet’s Intensive Therapy Unit (ITU) should her condition fail to improve, but three hours later the registrar reversed his decision, writing on Susan’s medical notes: “ITU declined in view of Down’s Syndrome and cardiac co-morbidities”.
In its investigation into Susan’s death, the Royal Free says it had been “unable to find any documented evidence of an ITU review” having taken place prior to this decision. The trust also interviewed all the hospital's ITU consultants who confirmed that “neither the presence of a cardiac pacemaker or Down’s Syndrome are considered exclusion criteria for ITU review or possible admission”.
At this stage Barnet’s ITU was operating above capacity with 27 patients in a unit with sufficient staff for 23 beds. However, by April the unit’s surge capacity had been expanded to 40 beds, suggesting that Susan could have been transferred to the ITU had she been deemed eligible.
On the afternoon of March 27, Susan was transferred to a ward that had been repurposed for Covid patients, but by now she was finding the oxygen mask increasingly difficult to tolerate - “patient desaturates to 82% without mask, however if held then oxygen improves,” reads an entry in her medical notes.
In a frantic phone call, Ida tried to soothe Susan. “I said to her: ‘It’s mummy, sweetie. Please keep your mask on, it’ll help you get better.’ And she just said: ‘Mummy, mummy, I don’t like it.’”
The next morning, Susan was moved to an open bay for one-to-one support and a nurse telephoned Clifford to say that doctors were going to discuss Susan’s case with the ITU team. But the review does not appear to have taken place. Nor could the Royal Free find any evidence that Susan’s case had been discussed at Barnet’s regular “Covid -19 huddle”.
Instead, following a consultant-led ward round at 10.49am on March 28 it was decided that Susan’s outlook was “very poor” and that “further lifesaving interventions were unlikely to be successful”. At 2.15pm that same afternoon, Susan’s treatment plan was set at “ward-based care with intravenous fluids and antibiotics” and Clifford was informed of the decision. Less than an hour later, Susan was dead.
Curiously, the Royal Free says it has not been able to identify the consultant who led the morning ward round.
“If she'd have been given a legal right of legal adjustment and a family member or a loved one would have been alongside the bed to keep that mask on, then a DNAR wouldn't have been an issue,” says John. “But at the end of the day, by the time he made that decision, she had already been neglected for 20 hours”.
In a special two-part podcast for Going Viral, John and Ida, described their daughter’s zest for life and their dismay at learning she’d been denied access to intensive care.
“She loved music, she loved to dance - she was the dancing queen,” says John. “She was Miss Positive.”
Disaster looms
John has long suspected that his daughter was a victim of a form of triage. In the run up to lockdown, we know that Boris Johnson and his advisors were concerned that, without drastic action, the NHS could be overwhelmed with severely ill patients.
Indeed, on Friday March 13 – the very day the Sullivans decided to institute their own lock down and keep Susan at home – Johnson’s special advisor Dominic Cummings scribbled the phrase “Who do we not save?” on a whiteboard in Downing Street. At that point coronavirus cases were doubling every two days and it was realised that, unless the country locked down hard, the UK might be looking at as many as half a million deaths.
“It was like a scene from Independence Day”, Cummings told the House of Commons Health and Social Care and Science and Technology Committee, referring to the 1996 disaster film in which the US is devastated by a surprise alien invasion.
Cummings recounted how, on the evening of March 12, 2020, he had met with Ben Warner, a data scientist serving on the Scientific Advisory Group for Emergencies, and his brother, Marc, who had worked with Cummings on the Vote Leave campaign. “They kind of hit the total panic button with me and they said, ‘we’re looking at all this data, we’re looking at all of these graphs, we’re heading for a total catastrophe and we need to have Plan B’.”
By the evening of March 13, Cummings said it was realised that the UK was “heading for the biggest disaster this country has seen since 1914” and someone would have to explain to Johnson that “we’re going to have to ditch the whole official plan”.
A week or so later, the Chief Medical Officer, Chris Whitty, asked a panel of medical ethicists to come up come up with a new population-wide frailty scoring system for rationing access to ventilators and other resources that were likely to be in high demand.
However, in the event, NHS England maintains that the document was never activated because, unlike in Italy, England never ran out of critical care beds and everyone who needed intensive care was able to access it.
Instead, the National Institute for Clinical Excellence (NICE) issued guidelines for the management of critical care in adults with Covid-19 using Dalhousie University’s clinical frailty scale (see image below). Essentially, this was a scoring system whereby patients were ranked from very fit – 1 - to severely frail – 8. In the case of patients scoring 5, mildly frail, or above, clinicians were instructed to consider whether critical care was “appropriate”.
In other words, how likely was it that they would benefit from a medical intervention versus another patient with a lower score on the scale? Clinicians were also told to consider comorbidities, such as diabetes, and conditions such as dementia.
However, within days NICE was forced to issue a clarification after protests from patient groups that the frailty scale risked discriminating against people with learning disabilities. Could this be what happened to Susan?
“Sixty percent of the early Covid deaths were disabled people,” John points out. “So how many people were, like my Susie, cast aside as though they were unimportant?”
When I approached the Royal Free for comment, a spokesperson for the trust declined to say what guidance had been in place at Barnet and the trust’s other health facilities at the time. Nor would they say whether medics had used a Clinical Frailty Scale to assess Susan and other patients in Barnet’s care. Instead, the trust issued the following statement:
“We would like to once again offer our sincere condolences to Susan's family for their loss and apologise that she died while under our care.
"Susan was admitted at the beginning of the COVID-19 pandemic, during a time of immense pressure for all hospitals across the NHS and when specialised treatments were yet to be identified. Unfortunately, she was very unwell with covid pneumonia on arrival and, sadly, clinicians thought that intensive care was unlikely to be successful.
"We have investigated the concerns raised by Susan’s family and implemented a number of improvements. These include requiring all staff to undergo learning disability training and educating staff on how to access the trust’s learning disability team.”
However, in its confidential investigation into Susan’s death, the Royal Free acknowledged a series of mistakes – or what it calls “deviations from usual practice”.
These included the failure to examine Susan in a timely fashion “despite her being severely unwell and being clerked in during working hours”, and a failure to refer Susan Sullivan to the Acute Liaison nurse for learning disabilities. It also acknowledged that “earlier review by a consultant may have resulted in earlier recognition that the patient was dying and a better end of life care experience for the patient and her family”.
These are precisely the questions that bereaved families hope the inquiry will be able to answer. Only Lady Hallett has the power to interrogate officials involved in the pandemic response and NHS planning, and only Hallett has the power to grant legal assistance to members of the bereaved, such as the Sullivans.
But that would mean allowing them to present their evidence directly to the inquiry – something, which, so far, she has declined to do. Instead, Hallett has asked that the bereaved trust her when she says they will “always be at the heart of the inquiry”. However, John is not convinced.
“She” – meaning Hallett – “has got tunnel vision,” he says.
“Unless you’ve got the ability to change track you’re never going to get to the truth… I hope she has the wisdom to say, maybe I've got that wrong. Maybe I need to alter my direction. Maybe I can learn something from the bereaved families after all.”