Pandemic policy deprives my mother of both family love and her human rights
My mother, Nancy, is a scientist. The first person in her family to go to university, she was awarded a doctorate in organic chemistry in 1960. A chemistry teacher for 20 years, she enabled scores of young women to enter careers in science and medicine. She learned Russian for the fun of it and, when she retired to north Wales almost 30 years ago to help with our twin babies, she learned Welsh to a level of fluency that enabled her to act as secretary for a local Welsh-language social club.
She is a gardener, a cat lover and is fond of owls. She is a hill-walker. She is a practising Christian. She is a lover of opera. She is a maker of marmalade. And she is a mother, grandmother and godmother.
As I write this, it feels as though I am drafting her obituary. My mother is alive, but we lost the person I’ve tried to describe in a catastrophic event just over a year ago. Nancy had a stroke sometime between Christmas Eve and Christmas Day at the close of 2020. Overnight, she lost her autonomy and agency over her own life.
In November, she’d had a fall and knocked her head and the anti-stroke medication resulted in bleeding on her brain. She was discharged from hospital back to her local authority residential home at short notice and without a care needs assessment. It immediately became apparent that her behaviour had changed: she was constantly agitated, hardly slept.
Just before Christmas she fell again and broke her hip. Doctors advised a hip replacement and she is recuperating in another community hospital, Ysbyty Bryn Beryl. She now has a diagnosis of dementia. I do not know whether we will be able to find a suitable placement for Nancy in the county.
These are the bald facts. How it has affected us as a family is less easy to put in words, but this is, simply, the saddest and most challenging thing that my daughters and I have ever endured. My mother, who never claimed a penny of welfare before her state pension, who believed in public duty and participated in every community in which she lived, suddenly needed the support of health and care services in an emergency.
Many of the key workers with whom we interacted over the last 12 months were extraordinary. We have been beyond lucky to have dealt with a number of nurses, doctors and care workers who had the confidence and humanity to keep to the spirit and not the letter of official edicts. Even so, I touched my mother’s hand only once during the critical six weeks after her first stroke. There were no hugs. Health authority infection policy vetoed family bonds of love as a health hazard to be minimised.
I am no Covid-denier. We put in place measures such as lockdowns and visiting restrictions at hospitals and care homes because they were the best we could do with what we knew back in 2020. We had no Covid tests at the onset. The development of effective vaccines happened at pace, but they didn’t become available until early 2021.
But we must continue to learn: treating the elderly and people with dementia as units of flesh and bone by meeting the barest minimum of their Maslow’s hierarchy of needs is wrong. We are social animals: take away our social support and we fail to thrive. Denying family contact causes immediate welfare harm to patients and will cause longer term harm to family members. I will live for the rest of my life with the guilt that I let my mother down at the time when she needed me most.
Wales has a respectable policy text in place with our Dementia Action Plan for Wales 2018–2022. But there is a yawning chasm between what it describes and the reality of what is happening in Wales’s hospitals and care homes.
Northern Ireland, Scotland and Eng
land have slowly and patchily accepted the need for essential care givers or care partners, whereby ensuring that people living with dementia and other vulnerabilities in social care can nominate someone who will continue to visit in a meaningful way, keeping to the same infection control measures as a member of staff. Wales finally acknowledged the concept of care partners in August 2021. Nonetheless, there remain many care homes where this is ignored, and where even the most minimal visits can be denied.
While we all know that the human rights of people with dementia in residential homes were disproportionately disrupted across the UK, it is to be feared that the human rights of people with dementia in Welsh residential homes fared worst of all. They have lacked public advocacy. This situation must be investigated as part of a Wales-specific Covid inquiry and lessons learned.
People living with dementia are progressing through stages of a terminal illness. Isolation, separation, disruption of relationships and routines have an irreversible impact on
I touched my mother’s hand only once during the critical six weeks after her first stroke. There were no hugs
wellbeing, and hasten deterioration and death.
The most recent weekly statistics show that 144 people died in Welsh care homes. Only three died with Covid as a contributory factor. Dementia is the greatest cause of death among women in the UK and the second greatest for men. Given that up to 70% of care residents are living with dementia, it is likely to have been a factor in the deaths of the majority of those 144 people.
The human rights of disabled, sick and elderly people are not optional extras to be disregarded when health and social care are under pressure. If the present health and social policy remains unchallenged and under-scrutinised in Wales (and elsewhere in the UK), basic human rights will continue to be ignored and people’s health and welfare will suffer. Not only would this be to our shame now, it also risks leaving a legacy of consequences into the future.
• Liz Saville Roberts is group leader of Plaid Cymru in the House of Commons
• John’s Campaign, championed by the Observer, campaigns for the right of people with dementia to be supported by their carers in hospital. Visit the John’s Campaign website here.