Social Care and the Role of Carers

Baroness Finlay of Llandaff Excerpts

Thursday 24th June 2021 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

I congratulate the noble Baroness, Lady Jolly, on securing this timely debate. I declare my interests with Marie Curie, the Motor Neurone Disease Association and other charities; I also chair the National Mental Capacity Forum.

There are two main groups needing social care: those with long-term chronic conditions, both physical and mental disorders, often both; and those who are terminally ill and dying. The first group often slips into the second as disease progresses. I want to focus on those families providing unpaid informal care. More than three-quarters of those carers bereaved during Covid reported that they were not offered the care and support they needed, and Carers UK data suggests that one in three may be nearing breaking point. Pre pandemic, it was no better. The Motor Neurone Disease Association found that more than 75% of unpaid carers had not had a carer’s assessment and a third spend more than 100 hours a week caring. When caring for other conditions, the average hours are less, but more than 1 million people are providing 50 or more hours of care per week. Marie Curie estimated that there were 6.2 million carers in the UK in 2018 and 500,000 were looking after someone with a terminal illness, which is about 8% of all carers.

Most informal carers are not professionally trained, and of the 1 million people eligible for attendance allowance, it is estimated that about a third do not claim it. When someone is nearing dying, a prognosis of six months is impossible to provide with accuracy, so the DS1500 form for funding is sometimes filled in relatively late, leaving the financial burden on the family even greater. For many, the care of a person who is critically ill, whose recovery is unpredictable or who has been in intensive care is particularly difficult. These family carers need to be taught some basics of caring and they need to know who to call for immediate support 24/7. The current systems of even supporting them are not adequate.

Those millions of people providing care usually do it well and willingly, but they are exhausted and are becoming more exhausted as there seems to be less support available. What consideration is being given to creating eligibility for a total of up to one month’s paid leave from work for informal carers when someone is critically ill or dying? This could be leave taken flexibly as required for the individual circumstance. After all, we recognise maternity and paternity leave. Why do we not recognise carers’ leave?