Our Parliamentary event – ‘Guaranteeing the right to maintain contact ‘ took place on 9th March in Portcullis House.
Six people directly impacted by separation and isolation spoke about their experiences and called for a new legal right to a ‘care supporter’ across health and care settings. A summary of the speeches is below, with links to the full stories.
Wendy’s story
Author Wendy Mitchell shared her experiences of being discriminated against due to her dementia, such as when a consultant refused to operate on a wrist injury stating ‘you have dementia, what do you need a left hand for?’ Wendy spoke of the vital support of her daughter, Sarah, in such situations, helping her to find her voice.
“I’d forget, each time when asked, that I had an allergy to something but Sarah was there to correct me. If alone, I would simply have said no and they’d continue with their questions, instead of Sarah correcting me each time – that could be so dangerous.”
Full speech published here: https://www.relres.org/covid-stories/wendy-dementia-story/
Ann’s story
Ann shared her frustration of being unable to support her mother, who would call her up to 30 times a day telling her she needed help or was in pain. When Ann asked for essential caregiver status (in line with Government guidance) it was denied and her mother issued with an eviction notice. Her mother passed away a week before the eviction notice deadline. Ann said:
“Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home sixteen months before.”
Full speech published here: https://www.relres.org/covid-stories/daughter-care-supporter/
John and Lesley’s story
John spoke of the anguish of not being able to support his wife, Lesley, living in care. Even as an essential caregiver who supports Lesley to eat, until this week he had to book a time-limited slot.
“At one point I was called in as my wife had not been eating or drinking, it was thought that she was nearing the end of her life. However, after seeing her for 3 days, Lesley was much brighter, eating and drinking and I was most upset when I was then prevented from continuing my visits as she had improved. I felt very sure that our family contact helped with her recovery.”
Full speech published here: https://www.relres.org/covid-stories/john-care-supporter/
Angela’s story
As a retired Emergency doctor, Angela relayed the shock and disbelief that the mental health and well-being of her mother was completely disregarded for the thirteen months she lived through the pandemic. Both Angela and her mother suffered unimaginable trauma as a result of the forced separation:
“My dear 93 year old Mum died last August after a long and debilitating illness which left her bedbound, unable to move and dependent on carers for all of her needs. Due to government guidance implemented by the Care Home I was not allowed to see my Mum for 13 months and then for a total of 10 hours until the last 5 days of her life when she could no longer eat, drink, speak or recognise who I was.”
Full speech published here: https://www.relres.org/covid-stories/angela-care-supporter/
Kate’s story
Kate explained how both her parents have been left isolated. Despite restrictions being completely lifted in the wider population, Kate’s parents remain subject to the harsh restrictions that continue in many health and care settings:
“365 days after I had last seen my mother, I was finally allowed a 30 minute supervised visit. I held her hand and she burst out laughing and crying at the same time, she shrieked in delight and laughed for 30 minutes. I wonder where she thought I had been? The carers were amazed, I was not – it was all she wanted – to see me.
“Last November Dad went into hospital…all he wanted was someone to be with him, to listen to the doctors, to hear what they were saying. At a time when he was at his most vulnerable, supporting my father was forbidden. This dreadful experience has had a severe effect on him both mentally and physically.”
Full speech published here: https://www.relres.org/covid-stories/isolation-parents/
Susan and Sarah’s story
Prior to the pandemic, Susan had acted as interpreter, care co-ordinator and advocate for her daughter, Sarah who has learning disabilities. Now, she describes Sarah’s isolation as like being stranded in a rural village in China where no-one understands her.
“Between November 2020 and May 2021, we were lucky to get four visits of one-hour slots, in full PPE behind a screen. She was too shy to speak to us the first half an hour. We had to leave her screaming “Don’t leave me!” or they told us she cried for 2 days after we left.”
Full speech published here: https://www.relres.org/covid-stories/susan-sarah/
Frances’ story
Frances, 100 years old and living in care, was unable to join the event in person but recorded a short video speaking about the ‘horrendous’ separation from her family:
Political support
50 MPs and Peers accepted the invitation to join the event, many more sent their support.
Tracey Crouch (Conservative) said:
“This was one of the most powerful meetings I have been involved in during my 11 years in Parliament. Access to a ‘care supporter’ should become a routine, key ingredient for good care, which one day any of us could need.”
Dan Carden MP (Labour) said:
“We must learn the lessons of the past two years and guarantee the right to a ‘care supporter’ in hospitals and care homes. Too many have been traumatised by being denied access.”
Daisy Cooper MP (Lib Dem) said:
“We need a legal right for vulnerable people to be supported by a family member in health and care settings. I look forward to working cross-party on this.”
Liz Saville-Roberts MP (Plaid Cymru) said:
“The human rights of disabled and older people are not fair-weather luxuries.”
Hilary Benn MP (Labour) said:
“How can anyone be opposed to this?”
Peter Dowd MP (Labour) went straight from the event to ask at PMQs for the call to be actioned:
“I called on the Prime Minister to end isolation in care homes and hospitals – it’s having dire and tragic consequences on thousands of families. The Government must bring in legislation.”
James Wild MP (Conservative) said:
“I listened to the harrowing experiences of people unable to see loved ones. It can’t be right that there’s a postcode lottery that leads to such cruel outcomes.”
Organisational support
35 organisations signed up to support the call for a new legal right to a ‘care supporter’, including Healthwatch, Mind, Mencap, Alzheimer’s Society, Parkinson’s UK, Dementia UK and Disability Rights UK as well as care providers. The full list, and details of the call, are available here: https://www.relres.org/care-supporter/
