A mother whose disabled son died following a “vortex” of decline when visits to his care facility were stopped has demanded greater access for other families to prevent similar deaths during the pandemic.
Melanie Macfarlane, whose son Jamie died on 30 October, said she believed he would probably be alive if she had been allowed face-to-face visits during the spring lockdown when his mental and physical health began to rapidly deteriorate.
The 21-year-old had Sanfilippo syndrome, a rare disorder that causes learning disabilities and a deterioration of physical and mental skills. He had a shortened life expectancy, but being prevented from seeing his loved ones triggered a catastrophic premature decline, Macfarlane said. He had an attachment disorder that focused on his mother, who did not see him for more than three months while he was in lockdown at St Elizabeth’s, a residential learning centre in Hertfordshire.
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“The carers were made blind to him by the use of masks,” Macfarlane said. “For someone who can’t process that it must have been terrifying, and that his mummy couldn’t come and rescue him.”
Macfarlane spoke out as MPs called for greater visiting rights in a parliamentary debate, which heard constituents’ accounts of desolation at being separated from loved ones. Huw Merriman, the Conservative MP for Bexhill and Battle, warned: “In seeking to protect vulnerable residents we may not only diminish their quality of life, we may end up prematurely ending it altogether.”
Jamie Macfarlane’s death was raised by Joy Morrissey MP, who told parliament Jamie would “call out in anguish: ‘I want my mum, I want my mum’.”
“I cannot begin to imagine what it must have felt like knowing that her son was denied the care of his family for months, denied a hug, denied the comfort of a warm hand holding his, denied dignity in his suffering,” the Conservative MP for Beaconsfield said. Denying access to loved ones was “inhumane and cruel”, she said.
The care minister, Helen Whately, said she was looking into the circumstances of Jamie Macfarlane’s death, but said loosening visiting restrictions now was “strongly against the clinical advice I have received”. However, she said some family members would be able to visit residents if they tested negative first, with a trial starting on Monday in 30 care homes. She said there could be a further roll-out of family testing in December.
The shadow care minister, Liz Kendall, said: “After eight months of lockdown there isn’t time to wait for a pilot scheme or another set of guidelines. We need action now.”
Macfarlane described how, during lockdown, she found her son was bewildered by seeing her on a screen rather than in real life, and when visits restarted in June he was changed.
“He completely went into himself and became very unhappy,” she said. “That’s what upset me most about the lockdown: the misery he went through because of it. All his joie de vivre, the lightness in his face, his joy of life went.”
There were family visits in July and August, but his decline continued. Anxiety and depression medication had to be increased.
“He turned from a young man who sometimes slept for 15 hours to not sleeping at all,” she said. “He was exhausted and miserable. He got very thin. He was so emaciated.”
In September he was admitted to Wexham Park hospital in Slough for a month to try to boost his nutrition, and doctors inserted a feeding tube into his stomach.
He couldn’t stand it and ripped it out, which caused serious damage. He developed sepsis and was admitted to intensive care. His body, frail from the weight loss over the previous months, and his underlying health conditions meant he did not have the capacity to fight back. He was admitted to a hospice on 28 October and died two days later.
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“The absence of visiting created a perfect storm and the outcome was inevitable,” said Macfarlane. “Once his mood was depressed it was like he was in some vortex that would only end one way. The speed with which we lost him and the rapidity of his decline wasn’t caused by his condition. I wasn’t expecting to lose him this year.
“What’s important is this stops happening and people who lack capacity are given back their dignity. Everyone is manically nervous about death because of Covid so it is easy to see why it happened. But human beings are more than a bundle of physical needs. Emotional and psychological health in cases like this have not been prioritised.”
Jill Rankin, the interim chief executive of St Elizabeth’s, said: “We absolutely understand how difficult it was for Jamie and his loved ones to be apart during the period in which government guidance prevented visits. Limiting the number of visits is not something we ever want to do, and we have sought to mitigate the impact of this through video calls, regular updates to loved ones … However, reducing the number of visitors to the centre is one of our most effective tools in the battle against coronavirus, and it continues to be a difficult balancing act to have as many safe visits as possible within the guidance at a time when cases in the community continue to rise.”
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