Nigel Marriott loved spending time with people, and he had a strong support network in his family. Image: Supplied
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Doctors chose not to ventilate a man with a learning disability during the pandemic. The family claim they were told “people like him” are not usually resuscitated.
Nigel Marriott was 60 when he died of pneumonia and suspected Covid-19. The family believe staff made “judgements” about his quality of life because of his disability.
“He loved his life,” his sister April tells the Big Issue. “He really loved his life.”
Nigel had a Nottingham Forest season ticket and went to a home game every other weekend with his older brother Kevin. He loved to read, and he adored spending time with people.
“He was absolutely lovely – a very gentle, kind, happy person,” April says. Nigel was two years older and had suffered “unspecified brain damage” during a difficult birth.
“His coordination was affected – buttons, shoelaces, things like that,” April says. “He could write and spell, but his writing wasn’t great. He was just a lovely person. He didn’t have the same sort of emotions. He didn’t really get angry about things. He didn’t have jealousy.”
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His parents had wanted to give him “as normal a life as possible”, and he had helped them run a hotel and pub in Cornwall, where they moved in the 80s, given the role of ‘chief bottle washer’.
He would collect pint glasses and spend most of his time chatting with the customers, who enjoyed his company as much as he did theirs.
Nigel had a wife, Anne, who had Down’s Syndrome, who he met at one of the day centres he went to a couple of times a week. She died before Nigel, and he missed her, but he was still happy.
Football was an important part of Nigel’s life. Image: Supplied
So when doctors decided that Nigel should not be resuscitated, the family were devastated.
The Covid Inquiry has heard that people with learning disabilities were told they would not be resuscitated or treated if they contracted coronavirus.
This was initially under guidance from the National Institute for Health and Care Excellence (NICE), which used a clinical assessment to determine people’s frailty. It considered if people needed help with tasks like shopping, and consequently, many people with learning disabilities were ineligible for treatment.
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The guidance was removed within a month, but charity Mencap received reports from people who had been told they would not be resuscitated much later into the pandemic.
A spokesperson for the NHS says: “During the pandemic, the NHS repeatedly instructed local clinicians that the blanket application of decisions not to resuscitate is totally unacceptable and that access to treatment and care for people should always be made on an individual basis and in consultation with family and carers.”
In the spring of 2020, adults with learning disabilities were more than three times more likely to die than the general population, according to a Public Health England report. Younger people with learning disabilities aged 18 to 34 were 30 times more likely to die of Covid than others the same age, further figures showed.
Jackie O’Sullivan, executive director of strategy and influencing at Mencap, says: “During the pandemic, stretched NHS resources and pressured decision-making meant that biases and discrimination became more visible and people with a learning disability suffered because of it. They were treated in a way that caused fear, distress and put their lives at risk.”
Nigel was admitted to hospital at the start of the pandemic with worrying symptoms – he was clammy and grey, his fingernails were blue, and his oxygen levels were very low. A doctor diagnosed him with pneumonia and although tests were not as accurate at the time, it was believed that he also had Covid.
April says the doctor “asked what the family would want to do about ventilation”, and she said that she would ask her father and brother. “He said they would not normally ventilate people like Nigel or older people. And that was the key thing. I wish I’d said something at the time,” April adds.
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“I believe that it was that consultant that put a DNR [do not resuscitate] order on Nigel’s record. We got his records afterwards, and he put down things like, ‘needs somebody to cook his meals, goes to daycare centres.’ I don’t know why him going to daycare centres would be a reason for him to not be ventilated. He was making judgments on Nigel’s life, and it just wasn’t the case at all.”
The Big Issue understands there may have been miscommunication between the hospital and Nigel’s family, and that the doctor’s personal reflection was that he made the comment in light of how unwell Nigel was, rather than it being about his learning disability – but this was not the interpretation of the family.
Nigel’s condition deteriorated while he was in hospital. He was struggling to eat. Any form of exertion made him retch. April was allowed to be with him at that point, and she stayed by his side without leaving the hospital. She says she told one of the doctors that the family wanted Nigel to be ventilated if he needed it – but the doctor said “he wouldn’t be, and at the end of the day, that was a medical decision”.
“She told me Nigel could go downhill rapidly and to be prepared,” April recalls, but by this time she was not feeling well herself. She had similar symptoms to Nigel. “If I left the hospital, I couldn’t return.
“I had to make the hardest decision I’ve ever had to make in my life, and I thought I could die. My dad would lose two of us. My three daughters would lose their mum. I had to leave the hospital and come home. It is the hardest thing I’ve had to deal with because of the guilt.”
April was very unwell herself but was able to call Nigel, and he said: “When am I coming home?” “That completely broke me,” she says now. “I just said that his bedroom was ready as soon as he was well enough to come home. I hope that gave him some peace in his last couple of hours.”
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April received a phone call soon after 10pm that night to say that it would not be long, and she was asked if she wanted to come in. She had to remind them that she had Covid, to which they said she could not come in then. She had the final phone call at 11.25pm to say that Nigel had died.
“I do feel that they made the decision he wasn’t going to be ventilated. I know it was difficult. There were a lot of people that needed ventilators. But actually, what gave them the right to choose that Nigel couldn’t have it?” she asks.
A spokesperson for the hospital which cared for Nigel says: “We take the care of every patient very seriously and are deeply sorry to Nigel’s family that we did not better explain how we would care for Nigel if his condition sadly deteriorated.”
During the Covid inquiry, Mencap revealed that GPs contacted care settings where people with a learning disability lived advising that they shouldn’t be treated or even resuscitated if they were admitted to hospital with Covid symptoms.
The charity also found that people with a learning disability were being discharged from hospital without adequate support, ending up in unfamiliar care settings which caused distress and confusion.
And there was a significant lack of reasonable adjustments made for people with a learning disability, whether that meant being accompanied in an ambulance or having visitors in hospital. Mencap highlighted that many were isolated and afraid, without people to explain what was going on and with clinicians missing out on getting crucial health information.
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A survey of learning disability nurses found that just one in five learning disability nurses reported always seeing reasonable adjustments being made, and one in four said they had seen examples where people with a learning disability were not allowed to be accompanied by a family member, carer or supporter into hospital.
Mencap has urged the government to bring justice and change to address the systemic challenges people with learning disabilities face when accessing healthcare, with “discrimination” not limited to the pandemic but indicative of wider problems.
The charity is calling on the government to introduce mandatory training for doctors and nurses on learning disability and autism, and for new learning disability improvement standards to be implemented. It also wants the government to address pressures on NHS staff, so that they have the time to properly support people with a learning disability.
“Government has a chance to learn from mistakes that have gone before and will need to truly listen to the experiences of people with a learning disability,” O’Sullivan adds.
A spokesperson for the NHS says: “The NHS remains fully committed to increasing support for people with a learning disability and is rolling out a new ‘digital flag’ in patient records to help ensure staff know whether their patient has a learning disability and the reasonable adjustments they need, as well as supporting the development of the Oliver McGowan Mandatory Training on Learning Disability and Autism, which has been accessed by over a million health and care staff.”
The Department for Health and Social Care (DHSC) is currently creating a new 10-year plan for the NHS, which Mencap claims is a key opportunity for the government to implement its recommendations. It is expected to issue a formal response to the Covid Inquiry in due course.
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April says: “For somebody to make decisions about his life and decide he didn’t have quality of life, for me, that’s the thing that is so painful, because he had a wonderful quality of life, even after he lost Anne. His quality of life changed slightly, but he was still really happy, and he was loving his life.”
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