National Carers Week

Barbara Keeley Excerpts

Thursday 8th June 2023 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is good that the hon. Member for Gosport (Dame Caroline Dinenage) has secured this important debate, because opportunities for the House to debate the difficulties faced by unpaid carers and to recognise their contribution are always valuable. However, this cannot be a recognition exercise alone. For too long carers have struggled to get by with little support from the Government, while at the same time providing many hours of highly skilled work. They have been worked to the brink for too long, and many now say that they are fed up with warm words. One unpaid carer, Rachel Adam-Smith, said:

“I cannot believe I am 19 years into my caring role and nothing has changed—other than the fact that I look more exhausted and feel more defeated.

We are given no time to rest, to look after our own health, to take a holiday or even to have a bath. We are all human, none of us are superhuman but unpaid carers are treated as though we are. We aren’t.”

Rachel asks:

“Will it ever change?”

Carers are right to feel disappointed and angry with the Government. As we heard earlier, research by Carers UK shows that a quarter of unpaid carers are cutting back on essentials such as food, and more than three quarters of carers said that the rising cost of living was one of the main challenges they would face in 2023. Gaddum, a charity in Salford, delivers the carers service contract for Salford City Council, which covers my constituency, and it shared with me some insights from a survey of the carers using its services, carried out in February this year. The survey found that 42% of carers’ finances had been negatively affected by their caring commitment, and 84% of carers’ emotional health had been negatively affected. One unpaid carer told Carers UK:

“To date I have sold both of our pensions, shares and insurances to maintain our living standards. They have all gone now so I had to start claiming Universal Credit last year. I have nothing left to sell and I am anxious that we are going to live in poverty for the rest of our lives.”

It is clear that the system of support for carers is not currently working. The financial situation is desperate for too many carers, and the direction of travel for Government policy is deeply concerning. Instead of helping unpaid carers with their unprecedented financial pressures last winter, the Government changed the arrangements for the warm home discount so that nearly 300,000 people with disabilities and their carers were no longer able to claim it. This spring they announced that they would reduce the already pitiful pot of money assigned to social care reform by at least £500 million. Support from the Government is falling away just as more and more carers fear having to cut back on essentials such as food and electricity.

The financial pressures resulting from those and other decisions taken by the Conservative Government have put a real strain on the mental health of carers. Gaddum has told me that carers’ own mental health has been the issue most frequently discussed through casework in the last few years. As the campaigner and unpaid carer Katy Styles recently warned, there is now a risk that carers will become cared for themselves. She said:

“Not only will local authorities and Government bodies be looking after the people that they care for, but also carers who are in a really bad way.”

The We Care Campaign, which Katy founded, does crucial work in amplifying the voices of unpaid carers. We Care is campaigning for more financial support for carers and to secure funding for carers’ breaks. The campaign is also pushing for longer-term solutions, including to the social care crisis, and a crucial national carers strategy.

As the right hon. Lady mentioned, the Government have failed to publish a national carers strategy. They consulted on one in 2016, gaining a lot of responses, yet ultimately the strategy was delayed and then abandoned. Some 6,500 unpaid carers contributed to that consultation, giving up what little time they had to invest their energies in providing details of their day-to-day caring roles. It was dismissive in the extreme for the Government to drop the proposed national strategy. Carers who had contributed to the consultation felt extremely angry. Katy Styles said at the time that:

“Whilst unpaid carers spent precious time informing a Strategy; that time and effort was wasted as that Carers Strategy was apparently scrapped. That’s how much carers’ lives matter.

A national strategy would set the tone on how society should value and support carers. Without a strategy; carers have no hope of being valued and supported.”

Nothing has changed in the past five years to give carers hope of being valued and supported. The 2018 to 2020 “Carers Action Plan” was a flimsy document shamefully void of funding and ambition. We have had nothing of any substance since then.

It is worth remembering that the national carers strategy published under a Labour Government 15 years ago was launched not by a junior ministerial group, as I think is being proposed in this cross-departmental roundtable, but by the then Prime Minister, and signed by all Secretaries of State. That commitment shown by Labour at the time was vital, because I understand that Care Ministers struggle to get that cross-departmental aspect—we have heard about how many Departments are involved.

The other thing is funding. When the strategy was updated in 2008, the last Labour Government pledged £255 million for new commitments to support carers. That included £150 million to increase significantly the amount of money provided by central Government for breaks from caring. The Carers Trust reports that unpaid carers consistently tell it that they value breaks and respite very highly. Carers say that taking a break from caring is beneficial for their health and wellbeing and can allow them to continue in employment. Yet funding for respite care has dried up since Labour’s national carers strategy, with the funding no longer earmarked for breaks as it was up to 2010. The current Conservative Government’s plan in the 2021 social care White Paper for five days of unpaid leave from care is woefully insufficient. It was also disappointing that the Government recently rejected the Lords Adult Social Care Committee’s recommendation on ringfenced funding for breaks. Carers Trust is now calling for a statutory right to respite breaks for unpaid carers across the whole UK.

Carers in Scotland have access to a national scheme giving unpaid carers access to breaks, and Wales will launch a national scheme in June. There should be a national scheme in England too, with local carer organisations as key partners, and it should learn from Carers Trust Wales when designing breaks for unpaid carers. A Carers Trust survey of over 2,500 unpaid carers found that 53% of respondents said a break from caring is what would make the biggest difference. Despite that, research from Carers UK shows that a quarter of carers have not had a single day off from caring in more than five years.

For many, unremitting caring takes a toll on their mental and physical health. Both the GP Patient Survey and 2021 census data show that carers are more likely than those not in a caring role to have a long-term health condition or to have reported “very bad or bad health” and to feel isolated and exhausted. Both studies also showed that the more intense a caring role is in terms of the hours of care provided, the more likely it is that carers will have poorer health outcomes.

The Social Care Institute for Excellence systematic review of evidence on carers breaks found that carers value breaks for a range of reasons: practical, emotional, social and psychological. For some carers, the break has value beyond its allotted time. For instance, looking forward to a break can have the same effect as the break itself. The importance of breaks is to be part of a whole-family approach and as a break from the caring routine, not just having time away from the person. Some carers prefer a break with the person they care for, or as a whole family, but just not when they have to do all the caring.

[Stephen Doughty]

My hon. Friend is making a crucial point. This is exactly what I saw recently at Tŷ Hafan in Sully in my constituency, where there is the option of hotel accommodation for the whole family on site near the person for whom they are caring, but without them having to undertake the full responsibility for care. A pristine natural environment also provides opportunities for the whole family to relax and get some quality family time together while having a break from their responsibilities.

[Barbara Keeley]

I thank my hon. Friend; that will sound very good to other carers.

Breaks can have a vital preventive role, sustaining the caring relationship and preventing carer stress, crisis and breakdown. There are key points where, if practical support and information had been provided, the negative impact of caring may be reduced. Breaks can reduce loneliness and isolation, enabling the carer, and the person they care for, to stay connected to family, friends and the things they enjoy.

We must face the fact that there has been a decline in the funding used to support carers breaks. Analysis by the Nuffield Trust of short and long-term data shows that 24,000 fewer carers were receiving breaks in 2020-21 than in 2015-16—a decline of 42%. It is no wonder that so many unpaid carers are exhausted. Claire, a carer from my constituency, told me that in order to attend the carers networking event in Parliament yesterday, the cost of alternative care for her mother was £33 an hour. She told me that there should be an alternative because the excellent Humphrey Booth Resource Centre in Salford has a four-bed unit for people with dementia. However, it cannot be used to offer respite care for Claire’s mother because it has been taken over to help with hospital discharge issues.

Another major issue facing many carers is that GPs and other NHS staff treating the person they care for often know nothing about their caring role, meaning that carers are not offered the support to which they are entitled, as we have heard. Another carer from Salford called Justine, whom I met in Parliament yesterday, told me that at the start of caring for her mother, who has dementia, she was offered no help or advice and did not know where to turn for support. Even when she asked social services for help, turnover of staff meant that different people were asking her to fill in the same forms again and again and that assessments were being done again and again. Justine said:

“You feel like you are treading water all of the time.”

Analysis by the Nuffield Trust shows that there was an 11% drop in the five years to 2020-21 in the number of carers in receipt of direct support. That is the equivalent of 13,000 fewer carers being given the choice and personalisation that direct support is designed to offer. That downwards trend is reflected in local authority gross expenditure on services for carers, which reduced by 11% between just 2015-16 and 2020-21. That has meant a reduction in the support offer available to carers. Local authorities provided fewer direct support payments and directed 36,000 more carers to information and advice only—that is all they got. Carers have since reported finding it harder even to access adequate advice and support, and satisfaction with carer support services generally is declining—hardly surprising.

Carers organisations know that proper identification of carers by the NHS would mean that carers could be supported much more effectively. Identification of carers is something I have campaigned on for many years. In 2012, I brought in a private Member’s Bill on the identification of carers that would have created a duty on the NHS to identify carers and to promote their health and wellbeing. The then Care Minister in the coalition Government would not support my Bill. Indeed, there is so much that could have been done in the past 13 years to avoid the appalling situation that too many unpaid carers now find themselves in, which has been made worse by the cost of living crisis.

We are here today because this is Carers Week, but care does not stop when Carers Week ends. The Government must urgently bring forward a long-term plan informed by carers and understood at the highest levels of Government. Ministers must learn to listen to unpaid carers—not just this week, but every week—and value their lived experience and insights. The We Care campaigner Katy Styles said that there are so many issues for the millions of carers whose voices she tries to amplify, but only a few of them were able to meet MPs yesterday. Katy told me:

“It’s a battle and a fight for everything. It’s grinding us down.”

We cannot continue to leave carers without proper support.

--- Later in debate ---

[The Minister for Social Care (Helen Whately)]

I thank my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for securing the debate, for her powerful opening speech and for all she does as chair of the APPG on carers. This week is Carers Week—a chance to recognise and focus on carers—but as every carer knows, if you are a carer, every week is carers week. I pay tribute to carers and young carers across the country for what they do, caring for loved ones, whether it is their mum or dad, brother or sister, a neighbour or their child, who will often be grown up, day in, day out, all year round.

Over 4 million people in England are unpaid carers. For some, caring may be a few hours a week helping a relative or neighbour with things they cannot do themselves or providing companionship. For others—in fact, nearly one in three, according to the latest census—caring means over 50 hours each week looking after someone. It is not just a full-time job, albeit unpaid, but how they are spending their lives.

My hon. Friend drew on her expertise, as a former Care Minister, and her personal experience. She spoke about how few families are untouched by caring responsibilities, about the sacrifices that carers make and how they are driven by love, but also the problem of exhaustion and burn-out for carers. She talked about the importance of identifying carers, especially young carers. She spoke powerfully about children with experience of dialling 999 because of a parent needing an ambulance but not telling anyone because of the stigma, particularly due to a parent’s mental health needs.

My hon. Friend asked whether we could build on some of the things we did for carers in the pandemic. I know, as I was Care Minister at the time, how incredibly hard the pandemic was for many carers, how isolated many felt and how many felt they did not have the support they needed. I know how difficult it was to work out how we could support carers during the pandemic, but we managed to do some things, such as identifying carers we prioritise for the covid vaccine. I will take away her request to look at how we can build on the things we did in the pandemic.

I know that the hon. Member for Worsley and Eccles South (Barbara Keeley) is a committed campaigner for social care and carers; we often speak in the same debates. She spoke about some of the financial difficulties for carers, the importance of cross-Government commitment to carers, and carers needing breaks and time off from caring.

My hon. Friend the Member for Cities of London and Westminster (Nickie Aiken) spoke about her personal experience of caring for her father. She talked about the loneliness and isolation but how cricket helped, which made many of us smile. She talked about young carers, how the sacrifices they make are often not appreciated and the long-term effects of being a young carer.

I pay tribute to hon. Member for North East Fife (Wendy Chamberlain) for her very important work in steering the Carer’s Leave Bill through Parliament. She spoke about things that employers can do more broadly to support carers and the opportunity of being a Carer Positive employer. The right hon. Member for Hayes and Harlington (John McDonnell) said that he chairs a local carers group, and I give him credit for that, whether or not it is a Labour group. That is a very important thing to do, bringing carers together to support one another and listening to what help they need. He spoke about the difficulty for carers in getting assessments. The hon. Member for Ceredigion (Ben Lake) spoke about the cost of living and the cost of heating homes for carers, particularly in his constituency, where many carers are off grid and use heating oil.

We also heard briefly from the hon. Members for Strangford (Jim Shannon), for Cardiff South and Penarth (Stephen Doughty) and for Livingston (Hannah Bardell) and my hon. Friend the Member for Henley (John Howell). That level of Back-Bench interest in this topic on a quiet Thursday in Parliament shows how strongly people feel, rightly, about the need for support for carers in our constituencies. We also heard from those on the shadow Front Benches, the hon. Members for Leicester West (Liz Kendall) and for Motherwell and Wishaw (Marion Fellows).

I know, from my own experience and from my family, that caring is something we do because it feels the right thing to do. We might not have a choice or not feel we have a choice, but nor can we imagine not doing it—not caring for the person we love. For many people, it is something that just happens to them: they become a carer without really realising it. Suddenly, they are spending hours caring—perhaps all their waking hours, and often in the night as well—without realising that they have become a carer, and without knowing that they might need support or, indeed, that they could get it. That is why recognising carers and helping them recognise themselves is important in its own right. There is a good reason why recognising and supporting carers in the community is the theme of this year’s Carers Week.

Local authorities, the NHS, schools, universities, all public services, and indeed companies need to continue to improve how unpaid carers are identified, recognised and supported in our communities. This Carers Week, I have had meetings with more than 30 unpaid carers, young adult carers and representatives from unpaid carers’ organisations, and both as Care Minister and in my life outside politics, I meet carers all the time—remarkable carers who have shared their stories with me. Those are so often stories of how hard it is to be a carer, although it is also really good to hear some positive stories. For instance, some employers are really supportive of carers and their caring responsibilities. However, sadly, that is not always the case; in fact, just on Tuesday, one carer told me that she is thinking about giving up her job due to a lack of support. Many hon. Members have spoken about that issue today.

On the important issue of juggling employment and caring, I want to highlight the Carer’s Leave Act 2023, which received Royal Assent on 24 May. Eligible unpaid carers will soon be able to take a week’s flexible unpaid leave each year. I am so pleased to see that Bill pass into law to help carers who are juggling work and caring.

This week, I also spoke to another carer about the challenges they are facing in getting the professional care and support they need. That is one reason why the work we are doing on reforming the adult social care workforce is really important. I say to carers, “Please keep on speaking up. Keep on telling your stories, for other carers and to make sure people know what it is to be a carer. None of you are alone.”

In April, we published our reform plan, “Next steps to put People at the Heart of Care”. The enormous contribution of unpaid carers is reflected in that plan, and in writing it, we were thinking about carers as well as those they care for. This financial year, £327 million of the better care fund has been earmarked to provide short breaks and respite services for carers, as well as additional advice and support. We are finalising plans for how we will deliver the additional sum of up to £25 million that we committed to carers in the White Paper, and I will be sharing those plans shortly. I know it is taking time, but I do really want to get it right.

The Health and Care Act 2022 includes provisions for the Care Quality Commission to assess the performance of local authority delivery of adult social care duties. That duty has gone live as of 1 April with our new assurance framework, which will provide a clear assessment of how local authorities are meeting their statutory duties, including those relating to carers, such as whether local authorities are undertaking their assessment of carers’ need for support and then meeting the needs that are identified. That will address one of the questions asked by my hon. Friend the Member for Gosport, along with other Members: how we make sure carers get the assessments to which they have a statutory right, as well as the support they are identified as needing.

We are working with NHS England to streamline the ways in which unpaid carers are recorded in GPs’ health records, and we have written to all GPs in England to communicate improvements to how that is carried out. Crucially, that identification of individuals with caring obligations extends to young carers. Questions designed to identify children and students caring for family members have been added to the school census, and that important data has been published today. We are also making progress on our plans to transform social care data, better joining up the care to people, including support to unpaid carers as well as those they care for.

Meanwhile, we are taking steps to design a new survey to capture the wide range of experiences and needs of unpaid carers across England, and to commission a valuation of the support provided to unpaid carers through the better care fund, including carer breaks and respite. It might seem obvious, but different carers want different things, so it is right that we take steps to understand and build the evidence base of what works and what matters when supporting carers.

[Barbara Keeley]

Will the Minister give way?

[Helen Whately]

I am really sorry, but I have but a minute left—Madam Deputy Speaker has confirmed that. However, to address the points that the hon. Lady made in her speech, I assure her that not a penny has been taken away from funding for adult social care; in fact, more money is going into adult social care, thanks to the record funding of up to £7.5 billion over two years that we announced in the autumn statement. A crucial part of our adult social care workforce reforms is our reform of the professional care workforce: developing social care as a career for the professional workforce, developing the career pathway and investing in qualifications for that workforce. That is very important to unpaid carers, because the top issue often raised with me by the unpaid carers I talk to is the difficulty of accessing professional care.

To close, I want to say as Minister for Social Care that I care, and I will continue to champion carers’ needs as part of the work I do across Government. I am delighted to announce that I will be convening a roundtable of Ministers to work together across our Departments to identify, recognise and support unpaid carers. I thank all right hon. and hon. Members who have made contributions on this important topic today, as well as Carers UK for its work this Carers Week and its year-round advocating for carers, and the other campaign groups involved in this week, including Age UK, the MND Association, Rethink Mental Illness, the Lewy Body Society and Oxfam. Finally, I say thank you to all carers.