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A mother whose disabled child died after a “vortex” of decline when visits to her care center were disrupted has demanded greater access for other families to avoid similar deaths during the pandemic.
Melanie Macfarlane, whose son Jamie died on October 30, said she believed he would likely be alive if he had been allowed face-to-face visits during the spring close, when his mental and physical health began to deteriorate rapidly.
The 21-year-old had Sanfilippo syndrome, a rare disorder that causes learning disabilities and impaired physical and mental abilities. He had a shorter life expectancy, but not being able to see his loved ones led to a catastrophic premature decline, Macfarlane said. He had an attachment disorder that was concentrated in his mother, who did not see him for more than three months while he was locked up at St Elizabeth’s, a residential learning center in Hertfordshire.
“The caretakers were blinded to him by wearing masks,” Macfarlane said. “For someone who can’t process that it must have been scary, and that his mom couldn’t come to rescue him.”
Macfarlane spoke out when MPs called for greater visitation rights in a parliamentary debate, which heard voters’ stories of devastation at being separated from their loved ones. Huw Merriman, the Conservative MP from Bexhill and Battle, warned: “By trying to protect vulnerable residents, we can not only lower their quality of life, but we can end prematurely altogether.”
Jamie Macfarlane’s death was raised by Rep. Joy Morrissey, who told parliament that Jamie would “scream in anguish, ‘I want my mom, I want my mom.’
“I can’t even imagine what it must have felt like to know that your son was denied family care for months, denied a hug, denied the comfort of a warm hand that held his, denied dignity in their suffering, “said the conservative deputy. for Beaconsfield said. Denying access to loved ones was “inhuman and cruel,” he said.
Care Minister Helen Whately said she was investigating the circumstances of Jamie Macfarlane’s death, but said loosening visitation restrictions now was “totally against the clinical advice I have received.” However, he said some family members could visit residents if they tested negative first, with a test starting Monday at 30 residences. He said there could be a greater implementation of family testing in December.
Shadow Care Minister Liz Kendall said: “After eight months of lockdown there is no time to wait for a pilot plan or other set of guidelines. We need action now. “
Macfarlane described how, during the confinement, she found her son was taken aback by seeing her on a screen rather than in real life, and when the visits resumed in June, it changed.
“He became completely on himself and became very unhappy,” she said. “That is what bothered me most about the confinement: the misery he went through because of it. All her joie de vivre, the lightness in her face, her joie de vivre is gone. “
There were family visits in July and August, but their decline continued. Medication for anxiety and depression had to be increased.
“He went from being a young man who sometimes slept for 15 hours to not sleeping at all,” he said. “I 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 improve his nutrition, and doctors inserted a feeding tube into his stomach.
He couldn’t bear it and ripped it off, causing serious damage. He developed sepsis and was admitted to intensive care. Her body, fragile from the weight loss of the previous months, and her underlying health conditions meant she lacked the ability to defend herself. He was admitted to a hospice on October 28 and died two days later.
“The absence of visitors created a perfect storm and the result was inevitable,” Macfarlane said. “Once his mood was down, it was like he was in a vortex that would only end one way. The speed with which we lost him and the rapidity of his decline was not caused by his condition. I didn’t expect to lose it this year.
“The important thing is that this stops happening and that people who lack capacity have their dignity restored. Everyone is insanely nervous about death due to Covid, so it’s easy to see why it happened. But human beings are more than a set of physical needs. Emotional and psychological health has not been prioritized in cases like this ”.
Jill Rankin, St Elizabeth’s Acting Executive Director, said: “We absolutely understand how difficult it was for Jamie and his loved ones to be separated during the period that government guidance prevented visits. Limiting the number of visits is never something we 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 center is one of our most effective ways tools in the battle against coronavirus, and it remains a difficult balancing act to have as many safe visits as possible within the guide at a time when cases in the community continue to rise. “
