Health and Care Bill

Baroness Hollins Excerpts
Compared with local authorities, the NHS has always lagged behind in the recognition of carers, yet the NHS depends, as we all do, on their contribution. The Minister has always done his best to acknowledge the carer contribution and their need for support. I hope he will do so today by accepting this amendment.
Baroness Hollins Portrait Baroness Hollins (CB)
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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.

Lord Young of Cookham Portrait Lord Young of Cookham (Con)
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My Lords, it is a pleasure to follow my new room-mate, the noble Baroness, Lady Hollins, and I agree with every word that she has just said. I also agree with the other speeches that we have heard in favour of the various amendments. I pay particular tribute to the noble Baroness, Lady Pitkeathley, for her tireless campaign over 40 years on behalf of carers.

I have added my name to Amendment 219 but I will focus on my Amendment 269, which focuses on young carers. I am grateful to the three noble Baronesses who have added their names. Might I be allowed a word on one line in Clause 80, whose future I thought we were debating in this group but which has now been incorporated into the Bill? The line is:

“The Community Care (Delayed Discharges etc) Act 2003 is repealed”.


Noble Lords with long memories may remember that Bill. At the time, I said it was the worst I had seen in 30 years. Instead of doing what this Bill seeks to do —to bring together health and social care to facilitate closer co-operation—it established an antagonistic relationship between the NHS on the one hand and social services on the other by enabling one part of the public sector unilaterally to fine another part. It was a friendless piece of legislation, heavily criticised in your Lordships’ House, as the noble Lord, Lord Hunt of Kings Heath, who had the misfortune to pilot it through, will doubtless confirm.

At the end, my noble friend Lord Howe said, nearly 20 years ago:

“On a more philosophical level, we need to ask ourselves whether this system of financially driven imperatives is what we want to see pervading the fabric of our public services wherever the NHS and social services interact. I am clear that it should not”.—[Official Report, 17/2/03; col. 929.]


How appropriate that, 20 years later, my noble friend helps to put the final nail in the coffin of that Bill. However, it had one redeeming feature: the obligation to assess prior to discharging a patient from hospital. However, as drafted, as other noble Lords have said, the proposals could have the unintended consequence of weakening protections for children who look after adult relatives.

My amendment is about young carers and is shaped by my experience when in another place of working with Andover Young Carers. Children barely in their teens were combining education with caring for disabled parents. The organisation was based in a small bungalow on a local authority estate, and it did heroic work, forging closer links with schools and children’s services. Some of the children spent more than 30 hours each week looking after parents and elderly relatives—almost the equivalent of a full-time job—as well as often having caring responsibilities for younger siblings. They cooked, did the housework, shopped, collected prescriptions, leaving little or no time to enjoy their childhood. The noble Lord, Lord Howarth of Newport, spoke movingly about the work of young carers in Kingston.

According to research from 2018, as the noble Baroness, Lady Wheeler, told us, there are more than 800,000 young carers in the UK. Recent figures show that 180,000 children in England who care for an ill or disabled relative are missing out on support, simply because they are not known to their local authority. Hence the need for this amendment which ensures that young carers are identified before adults are sent home from hospital to be looked after by them. If contact with adult carers is necessary, as we have heard, it is doubly necessary for young carers.

This is because we have clear evidence from Barnardo’s—I am grateful for its briefing—which shows that adults are being discharged from hospital into the care of children, without first making sure that these children are aware of their new responsibilities and that they have the support necessary to enable them to discharge them. I fear this is set to only get worse, placing more caring responsibilities on small shoulders, unless the Bill as currently drafted is amended.

The Care Act 2014 gave a young carer under the age of 18 the right to a needs assessment and placed a duty on local authorities to take reasonable steps to identify young carers in their area who may need support. Yet, in its report Still Hidden, Still Ignored, Barnardo’s found that young carers were still slipping through the net. Its finding is reinforced by the latest CQC survey, which found that 21% of people did not have their family or home situation taken into account when staff prepared them for discharge, a point referred to in the excellent paper which many noble Lords received today from Dr Moore at the University of Manchester.

This amendment places an obligation on the NHS to ascertain whether a patient will be cared for primarily by a young carer and, if so, to contact the local authority concerned for an assessment and the necessary support. This will not delay discharge but would ensure that hospital staff ask if a child under 18 will be the primary carer. If the answer is yes, the hospital should contact the relevant local authority which will ensure that a needs assessment is carried out.

I know the Government have made positive steps to ensure that the needs of young carers are recognised in the guidance which will accompany this Bill, and for that I am grateful. However, without a clear duty on hospitals to establish whether a patient is being discharged into the care of a child, the current situation is likely to continue. Guidance is worthy, but sadly not definitive. Therefore, the pathway for young carers to get the local authority assessment they are entitled to needs to be strengthened and here the health service is the key missing link. I speak to this amendment today because young people who care carry huge responsibilities and we must, as a society, do more to ensure they can live the flourishing lives they deserve.