Health and Care Bill

Baroness Pitkeathley Excerpts

Lords Hansard - Part 1 & Committee stage
Monday 31st January 2022 Lords Chamber

[Lord Howarth of Newport (Lab) [V]]

My Lords, I too would have preferred to speak later in the debate. I am sure that there are other noble Lords who have tabled amendments from whom the Committee would have preferred to hear nearer the outset, but I understand that the Deputy Chairman of Committees does not the flexibility to allow this, and I am of course grateful for the opportunity to speak.

As we know, the Covid-19 pandemic has led to a substantial rise in mental ill-health across the general population. Not surprisingly, this effect has been particularly hard-felt among unpaid carers. Many carers, already leading confined lives, have struggled with lockdown. Young carers have suffered with the loss of schooling and, when schools returned, trying to ensure that the people they care for have been shielded from the virus. Many were unable to go back to school for fear of bringing the virus home. Many from disadvantaged backgrounds did not have the digital resources to enable home schooling to be effective.

As we consider these amendments, I would like briefly to bring to the attention of noble Lords some remarkable work with carers being developed in Kingston upon Thames by Kingston Carers’ Network. KCN provides a range of crucial services to some 4,000 adult carers and 700 young carers from five to 18 years old. An important element of this support is nurturing the creativity of carers. Recognising, from the SHAPER research programme, which I mentioned in a previous debate, the positive effects of the arts on mental health and well-being, KCN is working with Rosetta Life to introduce three arts programmes for carers. Poetry and conversation provides co-created poetry workshops for adult carers, demystifying poetry and making it easier to approach. Participants have written and shared online poems about the challenges of caring. They have all said they would like more sessions.

KCN is trying to secure funding to participate with Rosetta Life in an international project called HeArt of Care. The idea is to offer master classes in dance, art making, photography, poetry and song writing for both adult and young carers. The project will create a website showing positive representations of the grace, dignity, compassion and joy of care and caregiving. The groups that would participate with KCN are a network of carers from Tyneside, Bristol Black Carers, Caregivers India and the End of Life Care Centre, Rwanda.

Another project is Room2Dream. Rosetta Life has a partnership with Dream a Dream in India, which works with 18 to 21 year-old carers who live in extreme poverty. This is one of 16 partnerships between young people in the UK and young people in refugee camps, conflict zones, hospices and adolescent psychiatric care. Young carers are offered poetry and song-writing workshops; they are given classes in film-making to enable them to create films about their poems and songs, and share them with other young carers not only in India but in, for example, Rwanda, Syria, Zimbabwe and Nepal. KCN is currently trying to secure funding for this initiative too.

These fledgling projects highlight the potential of the arts to improve the lives of unpaid carers and to enable them to have a voice that will be heard nationally and internationally. We should ensure that the system created through this legislation will underpin such ways to strengthen the resilience of carers and, beyond that, to enable them to flourish. These amendments will help. I look forward to a time when public policy, far more reliably and generously, supports unpaid carers to have better lives while they do their crucial work.

[Baroness Pitkeathley (Lab)]

My Lords, for 25 years, I have been trying to bring the voice of carers into your Lordships’ House. I know, from the great amount of support I have received over those years, that the whole of your Lordships’ House agrees that we should recognise and value the enormous contribution of millions of people caring for families and friends, who do so much to support others, often at great personal cost. I make no apology for repeating the statistics: up to 13 million carers provide unpaid care worth £530 million a day, or £193 billion a year. They are indeed the backbone of our health and care system.

Ensuring that the health system identifies and supports carers in return is the least we can do, and that is the objective of the four amendments to which my name is added in this group. I am also very supportive of Amendment 217 moved by the noble Baroness, Lady Wheeler. I thank her for her excellent introduction. I am strongly supportive of Amendment 219 and am grateful to the noble Baroness, Lady Brinton, for tabling it.

As Members will know, I have long called for the NHS to have stronger duties towards unpaid carers. The NHS depends heavily on the role and input of people who care unpaid, usually family and friends but quite often neighbours, in supporting people with long-term conditions and disabilities in the community. Research by Carers UK shows that more than half of carers say they feel invisible to the NHS; more than half of carers providing significant amounts of care were not involved in decisions about hospital discharge; and the majority of carers, over 60%, were not given enough information and advice to care safely, at the point of hospital discharge, for the person they care for.

Placing a duty on the NHS with regard to carers is needed, as there is currently neither a systemic nor systematic approach towards carers in the NHS. As the noble Baroness, Lady Brinton, pointed out, a duty to carers would help greater integration between services. Currently, local authority social care sees carers as equal partners in care and very much part of the system, whereas carers can be invisible to the health system. This duty would also lead to direct benefits to the health system, including improved health and well-being, improved satisfaction with services, and reduced admissions and those all-too-frequent readmissions. More practically, it would avoid the significant omissions of carers in recent guidance on hospital discharge, to which I now turn.

Amendment 221 proposes to insert a new clause to protect carers’ rights. As it stands, Clause 80 is of great concern. Almost incredibly—I can hardly believe I am saying this—it removes from carers rights that have been hard fought for over many years and which were enshrined in the Care Act 2014 and the Community Care (Delayed Discharges etc.) Act 2003. Many of your Lordships will remember those Acts and the many hours we spent on them.

This Bill repeals the legislation giving carers the fundamental right to have an assessment and ensuring that the services provided make sure that discharge from hospital is safe. There are endless horror stories about unsafe discharges and this issue has been debated extensively in another place. Hospital discharge is one of the most difficult points in the care system for unpaid carers, who often take on caring responsibilities without the right support.

Through Clause 80 in the Health and Care Bill, the Government are seeking to pass legislation that would enact the discharge to assess approach mentioned by my noble friend Lady Wheeler, which has recently been deployed by NHS England, by repealing, as I said, the Community Care (Delayed Discharges etc.) Act 2003. Amendment 221, in my name and supported by the noble Lords, Lord Young of Cookham and Lord Warner, and the noble Baroness, Lady Tyler of Enfield—to all of whom I am very grateful—would ensure that, in advance of any patient being discharged from hospital, the relevant NHS body must identify and consult any carer who is about to provide or will be providing care. This would ensure that the local authority is not the only statutory body with responsibilities towards carers and that the NHS plays its equal part. It would also ensure that the carer in question has services that protect their well-being and that assumptions are not being made that they will automatically provide care—assumptions that are made far too often.

Carers’ organisations are extremely concerned that the inclusion of carers in this guidance for discharge to assess is insufficient to protect carers’ rights. I ask the Minister, on what evidence basis is the move to discharge to assess better for unpaid carers? The evidence seems to be that discharge to assess is worse. The Government’s own impact assessment of the Bill recognises that it will lead to many carers having to take on even more care. It states:

“There is an expectation that unpaid carers might need to allocate more time to care for patients who are discharged from hospital earlier. For some, this may result in a … reduction in work hours and associated financial costs.”


Are the Government really suggesting that carers go on to benefits—the carer’s allowance, for example, which is only £67 a week and recognised as a pathway to poverty?

I am sure the Minister is also aware that if a carer gives up work to care, they do not immediately get any benefits. That leaves them without any income at all. Or are the Government suggesting in their impact assessment that discharge to assess is better for carers by suggesting they take unpaid leave from work, in the process passing on the costs of hospital discharge to employers? Giving up work to care hurts the economy and costs businesses money in terms of recruitment and retention. So I would really like the Government to explain the thinking on this one, because I have lost count of the number of Ministers who have stood at the Dispatch Box and agreed with me that the best thing you can do for carers is enable them to stay in paid work as long as possible. So will the Minister please explain that to me—or better yet, be prepared to explain it to a group of carers that I am happy to arrange to meet him?

I turn now to Amendment 225, on the definition of a carer, which will be spoken to by the noble Baroness, Lady Hollins. It may seem unbelievable, but when I started in the carers’ movement in the mid-1980s, the word “carer” was unknown. Yes, it was not even in the dictionary, and every time you typed “carer”, your spellcheck corrected it to “career”. Now the word is everywhere and, in a way, the unpaid carers movement is a victim of its own success, because everyone wants to be called a carer and it is increasingly used to describe paid care workers. Carers themselves actually have difficulty in identifying themselves as a carer—“I’m not a carer, I’m a mother, a husband, a daughter”, is what they say. This lack of identification is an obstacle to them accessing support, so a proper definition is vital and it must be all-encompassing, as set out in the amendment. We fought very hard to get these definitions acknowledged in statute, for example the Care Act 2014, and it is important that the word “carer” encompasses parent carers and young carers.

I point out that the purpose of this amendment is not to create anything new. It uses only existing legislative references. Its purpose is to ensure that the definition of carers in the Bill is entirely clear, so I see no possible reason for the Government to reject it.