My Lords, it is a pleasure to follow the noble Baroness, Lady Pitkeathley, and her powerful speech. I support the amendments in this group
and will speak to my Amendment 225. First, I declare an interest as an unpaid carer myself, who has had to take on considerable additional caring responsibilities as a result of the pandemic. I enjoyed the description of the noble Lord, Lord Howarth, of the use of poetry, because it is certainly a new hobby of mine, which I found very helpful during those long months of caring.
Mencap’s survey from the first wave of the pandemic in 2020 found that four in five carers of people with learning disabilities were taking on much more care of such people in their families because of the loss of paid support and daily activities for their family members. For many, it will take many months, even years, to return to pre-Covid levels of paid support to support those carers.
During the pandemic, care and carers were often spoken about as synonymous with care homes. I found it very discouraging as an unpaid carer myself to think that it was so little understood in government communications about the pandemic. I tabled this amendment to ensure clarity regarding to whom the Bill refers when it uses the term “carers”. As the noble Baroness, Lady Pitkeathley, explained, it does this by providing existing definitions of carers that are present in related legislation. I too thank Carers UK for its helpful briefing and support.
The amendment is necessary because there is so much confusion about the term “carers”. It is used to describe paid care workers, who I prefer to describe as support workers, or perhaps carer support workers, but that is not the same as caring for a family member and caring about a family member, which is a central part of the role.
The amendment is necessary for another reason: the inclusion of parent carers and young carers more systematically, where appropriate, in the Bill’s consultation and involvement provisions. This should drive better practice and outcomes for all concerned as well as providing clarity.
The provisions in the Bill relating to carers to which this amendment refers do not mean that all groups of carers defined here must be consulted or involved for all services, but only where appropriate. It does, however, provide clarity. The Health and Social Care Act 2012, on which the legislation builds, did not define carers either, which in hindsight it probably should have. This is therefore an opportunity to refine the legislation based on this experience.
Carers UK’s view is that this amendment would improve the clarity and delivery of policy and practice. Family and friends who provide care often put their needs at the back of the queue, and yet the NHS would collapse without them. As already set out, young carers face particular health inequalities and challenges in caring. Evidence from the Children’s Society shows that one in three young carers has a mental health issue and 80% of young carers felt more isolated during the pandemic.
The amendment has the broad support of a variety of different organisations that deliver services and support to carers, and which would welcome this clarity. As well as Carers UK, this includes the Patients Association, MS Society and many local carers’ organisations. As
they are the organisations which will be implementing the legislation, supporting and informing carers and providing clarity is essential.
When this issue was raised in Committee in the House of Commons, the Minister said that “carer” should be defined in its everyday sense as unpaid carer. However, we already have sound legislation, which can be referred to, that defines carers. We need to ensure that the muddle of terms created during the pandemic is undone. I ask the Minister to define carers clearly in the Bill by accepting this amendment and to recognise the hugely invaluable role that carers play in our society.