What difference would unpaid leave to care for a relative make?
When Steph Clayton's mother, Grace, fell suddenly ill, the new school year had only recently started. A teacher from Sheffield, now 60, she didn't feel she could take time off work. She wasn't with her mum when she died.
Prime Minister Theresa May has announced plans to introduce a year's statutory unpaid leave for people to care for relatives. Some have welcomed the move, but others say fundamental issues have not been addressed. Steph told the BBC that she approved of the proposals.
"I should probably have taken some time off to be with Mum, but I didn't feel like I could," she said. "My mother died alone, on an intensive care ward, because I was too afraid to take time off work to be with her. My mother was in a terrible situation. I should have been there." Since her mother died, in 2013, Steph has struggled with the circumstances of her death. "If I had been able to take leave to be with her, her end of life would not have been the nightmare she experienced - alone, afraid, feeling she had been abandoned," she said. "I can't believe that as a society we are conditioned to work despite terrible, traumatic, life-changing personal circumstances." Steph does not believe she would have had to take the full year permitted by the Conservatives' plans. The deterioration in her mother's health was rapid. She just needed a few weeks to care for her mother in her final days.
'Constantly worried about finances'
Others facing up to caring for loved ones with longer-term health complaints are more circumspect about the proposed moves. Sue Tilbury, 44, is a full-time carer for her husband, Jason, as well as looking after their 15-year-old son. Jason is epileptic and has significant care needs. "The actual seizures only last five or 10 minutes but it's the recovery time," Sue told the BBC. During seizures, Jason can sometimes suffer from hallucinations.
Although Sue ordinarily cares for Jason at home, the hallucinations can be severe enough to require hospital treatment."I don't think the government understand how difficult it is to live with a disability," Sue said. "What about people in my situation who can't go to work? And what are people who do work meant to do without pay for a year? I'm constantly worried about our finances. Carers' allowance isn't enough. You can't live on that."
Julie Anstey, 54, lives in Wetherby, West Yorkshire, where she runs an independent speech and language therapy practice. "Allowing a year's leave would be devastating for my business," she said. "Our profession is very small and with very specific training. It is difficult enough to recruit appropriate staff in the first place, without having to find staff who can provide cover. Our success depends on building good and consistent relationships with our clients and continuity of service."
However, Julie has experience of both sides of the argument, having cared for her mother before she died. "I was employed. I also had two young children at the time," she said. "I was fortunate that I had my husband to support me, as I would not have been able to take unpaid leave. I was not eligible for a carer's allowance and even if I was, it would not have been sufficient for me too look after my family."
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The proposed leave would not have helped her, she told the BBC. "What I needed at the time was not time off work," she said. "I needed really good social care that would have enabled me to keep working and look after my children and allow my mother to stay in her home."
Despite paying for additional support, Julie says that the quality and quantity of care for her mother declined as her needs became more severe."I will never forget the Christmas Eve they released my mother from hospital," she said. "She was completely bed bound with no care plan. It was left to me and my husband to look after her every need, because there was only a skeleton care team available over Christmas. No amount of time time off work would have helped in that situation. She died two weeks later. I am left with the guilt of feeling I could not do enough for her."