National Carers Week

Thursday 8th June 2023 Commons Chamber

11:52

[Dame Caroline Dinenage (Gosport) (Con)]

I beg to move,

That this House has considered National Carers Week and respite for carers.

I thank the Backbench Business Committee for allowing us time to debate in the House today the important issue of unpaid carers. I thank, in particular, those Members who supported my application for the debate, including the right hon. Members for Kingston and Surbiton (Ed Davey) and for Dwyfor Meirionnydd (Liz Saville Roberts), and the hon. Members for Bolton South East (Yasmin Qureshi), for Strangford (Jim Shannon), for Brighton, Pavilion (Caroline Lucas), for Motherwell and Wishaw (Marion Fellows) and for St Albans (Daisy Cooper).

As all hon. Members and those watching the debate will know, it is taking place during Carers Week, which is held each year to raise awareness of those caring unpaid for family and friends who are living with a disability or who are frail or unwell. It is led by Carers UK but supported by Age UK, Carers Trust, the Motor Neurone Disease Association, Oxfam GB, Rethink Mental Illness and the Lewy Body Society. I encourage everyone who does not already know to go and find out more about the brilliant work of all those organisations.

The latest census data from 2021 shows that millions of people—in fact, 5.7 million people across the UK—are currently providing some form of unpaid care for a friend or family member who, due to illness, disability, mental health or an addiction, cannot cope without their support. The majority of people providing that care are women. Indeed, many of us may be personally caring for someone, or will have someone in their family, or will know of friends or neighbours, who go to great lengths to support people they love. There are virtually no families untouched by this responsibility across the country.

I speak today as co-chair of the all-party parliamentary group on carers. I am a former Minister for care and had responsibility for unpaid carers when in Government. However, my first experience of this came when my mum was a carer for my grandmother, who was living with dementia. At the same time, I had just had my first baby—he is now 20. My mum was attempting to support me in bringing up a small baby and my grandmother who was living with dementia. She was part of the generation of sandwich carers we see across the UK, who are sacrificing their own health and wellbeing, their own relationships and their own profession to show such love and dedication for someone else.

We know that caring can be an incredibly profound experience. For many carers it is a very positive experience that enables them to build a very special bond with those they care for. In the vast majority of cases, it is driven simply by love. But we also know that it can take its toll on their own health and wellbeing. Caring can take such a different variety of forms. It can be anything from really intimate personal care to quite complex healthcare, right the way through to the emotional support of being a stable companion and providing encouragement to the person they care for. The care can be utterly lifechanging for those who receive it. One person said to me:

“The difference she makes to my life is unbelievable. She has given me back the freedom to actually go out and enjoy my life.”

However, we also know that caring can be extremely complex, and there is no denying that it can be exceptionally challenging as well. Indeed, too often the efforts that carers go to, to keep those they love safe and well, leaves people exhausted, burnt out and struggling to live a life beyond their caring responsibilities. As a result, many carers are extremely concerned and worried about the future. Beverly told me about her caring responsibilities and the impact they have on her life. She said:

“I am a full-time carer to my son who has Down’s syndrome and my husband who has Parkinson’s. By full time, I mean every hour of every day, day and night. I do it because I love them and I want them to have as good a life as possible. It is a never-ending round of jobs like cutting meals, making sure meds are taken, washing, appointments, making sure they are appropriately washed and dressed—and that is without having elderly parents to support. The sad thing is that you also forget to look after yourself.”

That is one of the biggest messages I want to get across today. Many carers like Beverly find that their relationships are impacted by their caring responsibilities because of a lack of support and recognition. That can lead to social isolation and mean that carers who are struggling to balance paid work and unpaid care have to leave the labour market or reduce their hours of work.

There are also significant financial costs associated with caring. Carers often use their own incomes and savings to pay for support services and care equipment for the people they care for. We also know that carers can face poorer health outcomes than non-carers, with a high proportion struggling with their own physical and mental health problems, and experiencing very low levels of wellbeing.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing the debate. She is right that there are so many unpaid carers across the whole of the United Kingdom of Great Britain and Northern Ireland. My brother was involved in a motorbike accident some 19 years ago, and my mother, my wife and my son all look after him. Conservative estimates say that £162 billion per year is saved through unpaid care. That is just one example of the vital nature of carers. The hon. Lady refers to the impact on those who care: the pressures psychologically, financially, emotionally and physically. Does she agree that some consideration must be given by Government for respite care? I know how important that is to some of my constituents. I suspect she will confirm that when she replies to me, but I think something needs to be done there.

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right. Respite care comes up time and again as one of the big asks for unpaid carers. They want to carry on doing the role they are doing. They deeply love the people they are caring for. They take a huge amount of personal responsibility and pride with the care they are giving, but they need that little bit of support. Around the time of covid, in particular, we saw many, many unpaid carers going on for months, years even, without the ability for any kind of respite. The figure he quotes is crucial: £162 billion a year is the value that unpaid carers are saving our health and care system. That is an incredible amount of money. It is like a whole separate, second NHS, saving that amount of money. The huge pressures placed on the other NHS we have result in delays for unpaid carers in obtaining the primary and secondary healthcare appointments that they need. The record demand for our social care services means that carers are not getting the support that they need.

I want to spend a little time exploring some of those challenges in more detail. Other Members across the House will add their own voices. As I noted earlier, many carers are struggling with poor mental and physical health. According to Carers UK research, one in five carers says that their physical health is bad or very bad, 30% suffer from poor mental health and over a quarter say that they often or always feel lonely. Carers provide many hours of support for the people they care for, but very few are able to take a break from their caring. That results in tiredness and, in some cases, exhaustion and burnout. As the hon. Member for Strangford said, worryingly, 41% of carers have not taken a break from their caring role in the last year. A carer called Anton told me about the strain that caring is placing on him:

“It is hard, often draining and mentally and emotionally painful work, bordering on damaging. Due to my responsibilities and the amount I am depended on, I am often anxious, feel hopeless and depressed.”

Carers are not getting the support that they need from our health and social care systems, as both systems are under intense and increasing pressure. Many carers have experienced delays in accessing healthcare appointments and services. One fifth of carers who request a GP appointment have to wait more than a month to see a doctor, and over a third have had to wait more than a year for specialist treatments or assessment. That causes additional stress and anxiety, and results in many feeling isolated or forgotten about.

This year, only a quarter of carers said that they had undertaken a carer’s assessment in England—a statutory right under the Care Act 2014. Of those who received an assessment, many were concerned that it did not lead to any improvements in the support provided to them. Could the Minister outline what she is doing to ensure that those carer assessments are not only conducted but conducted properly and that the outcomes are delivered? In fact, 39% of carers said that they did not even know what a care assessment was—that is the severity of the problem. A carer called Trevor told me:

“I get no support whatsoever. It has taken nearly 4 years to get a carer’s assessment from the Local Authorities which is now imminent. I have no expectations whatsoever.”

What is the Minister doing to communicate with local authorities to make sure that those important carer’s assessments take place? Debbie contacted me to tell me:

“I’ve had no support whatsoever. Support seems to consist of ticking a box to say I’m a carer but nothing more.”

It is just not good enough.

I want briefly to touch on the financial impact that caring can have. The cost of living means that carers currently face unprecedented demands on their finances. Concerningly, more than half of carers say that they are extremely worried about managing their monthly costs. A quarter told Carers UK that they are cutting back on essentials such as food or heating, and over three quarters said that the rising cost of living is the main challenge that they will face in the coming year. Many have been desperately trying to find ways of saving money, but that can be difficult because, quite often, the people they are caring for need life-saving care equipment that requires energy, or they need to ensure that the person they are caring for is kept warm. David told me about the financial impact that caring was having on him:

“I have been a full-time carer for my wife for over 10 years, and I’ve found that the money I get doesn’t even cover energy bills. It’s a constant struggle: all unpaid carers want is enough money to pay our bills and still have something left over to buy things when we need to. We are saving the country a lot of money by doing what we do and some recognition would be appreciated.”

[Stephen Doughty (Cardiff South and Penarth) (Lab/Co-op)]

I thank the hon. Lady for bringing forward this crucial debate. The other day, I had the pleasure of visiting Tŷ Hafan, the children’s hospice of Wales, in my constituency. I heard many similar stories to those she is reporting, about how people are struggling with the cost of living, particularly if they are having to run expensive medical equipment, given the associated energy bills. It is brilliant that Tŷ Hafan provides not only crucial respite for families and those they support directly, but support and advice on the cost of living.

[Dame Caroline Dinenage]

That is absolutely right. The Government have spoken about a social tariff for energy, but identifying who the carers are and how they can access that support is vital.

Gary told me about the financial struggles he has because of caring:

“After giving up a reasonable salaried job to care for my wife, we fell into severe financial hardship and were resorting to food banks. When the cost of living crisis happened, it was so bad I had to take up part-time taxi driving, which takes me away from my care role, in order to survive, but I can only earn so much due to the limits imposed or lose the carer’s allowance.”

That is adding additional stress and complexity to his life.

Supporting carers to stay in or return to paid work is essential. We want to ensure that carers can live a life free from poverty in older age, but 75% of carers who are working alongside their caring responsibilities are worried about juggling work and care. Increasing numbers of employers are recognising the importance of supporting carers in the workplace, and it is vital that they maintain flexibility so that people can continue to do their incredible juggling acts.

Nicola told me that she had to give up her career as an embryologist to care for her daughter, who has Angelman syndrome. She said:

“We have no family support, no help from the council and my daughter is awake for hours in the middle of the night, which means that we are unable to sleep and are completely exhausted. The only income I now receive is carer’s allowance. We solely rely on my partner’s income, which covers our bills. We have already moved to a cheaper house, but it is still extortionate as we live in Surrey and my partner has to commute into London daily.”

Lucy, who cares for her disabled son, who has cerebral palsy, told me:

“I have had to give up my job as a company director as his needs and required medical operations means I cannot keep a job any longer. I have gone from having a £40k+ job and am now claiming carer’s allowance.”

Finally, more needs to be done to support and help carers to recognise themselves as carers. Many are not doing so, which means they are missing out on the support they need. Research that the charities involved with Carers Week released on Monday found that 73% of people in the UK who are providing or have provided unpaid care in their lifetime—roughly 19 million people—have not identified themselves as carers. Research also shows that half of all carers take over a year to recognise that they are in a caring role, with over a third taking over three years to recognise themselves as carers.

That is particularly pertinent to young carers, who may not know that they are carers. In many cases, their situation can be misinterpreted. Schools can perceive young carers to be bad students because they are not paying attention, when in many cases they are just extremely tired and stressed by their caring responsibilities. Schools need to go much further to identify young carers in their midst and to support them.

In cases where a young person is supporting a parent with mental ill health, there is a stigma attached and they do not want to tell their friends. I remember meeting one young gentleman at a carers’ festival that is run every year, which is a wonderful way of supporting young carers to live life like normal young people and enjoy themselves. He told me that his mother had made many attempts to take her own life and that, as a very young child, he had to get used to phoning 999 for the ambulance to take his mum away and save her. He never told his school about this because of the stigma attached to it; he felt deeply isolated and ashamed. We need to double down on our efforts to ensure we identify young carers in schools.

[Jim Shannon]

I thank the hon. Lady for giving way; she is very generous. Figures mentioned in the press last week indicated that some 25% of those who care have mental stress, depression and concerns themselves. She has outlined that from a young person’s point of view—what she says clearly illustrates the need for Government to grasp the role of carers and the impact that role has on them.

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right about the mental pressure put on carers because of the responsibilities they take on, but also because of the perceived lack of support or respite. It is important that we recognise that that can mount up and overwhelm people, and that they can experience burn-out and ill health.

I want to recognise the work of Governments across the UK and the range of actions they have taken to provide carers with more help and support. In England, the Government aim to support carers primarily through adult social care reform, but also provide support through the Better Care Fund. In the context of reform, I was pleased to note that there is a specific chapter on support for unpaid carers in the White Paper “People at the Heart of Care”, which states that the Government will

“build on the foundations of the carers action plan”

—which I published when I was Minister for Care—

“to set out a new strategic approach”.

I look forward to hearing more about that. Perhaps the Minister will give us further details about the timescales. I should also like to hear more about the £25 million investment that the Department of Health and Social Care has pledged to make in support of unpaid carers. I understand that the details will be announced shortly, but given that it is Carers Week, I should be grateful if the Minister could indulge us and give us a sneak preview of what might be coming up.

I should like now to think back, briefly, to the support that the Government provided to help carers through the pandemic. A number of measures were introduced, including a highly effective identification programme. The Government worked with local authorities, GPs and local carers’ organisations to identify new carers and ask them to come forward for the covid vaccine, for which they were prioritised thanks to fantastic lobbying work by Carers UK and the Minister—who was also the Minister at that time, although there have been a few bumps in the road since then. It is great to see her back in her place. The programme demonstrated an ability to identify carers that does not seem to be moving on into everyday life, and I should like to see that continue. The Government also relaxed some of the rules applying to claims for carer’s allowance, and I should like to see that continue as well.

Further significant steps have been taken in the last year. The Carer’s Leave Act 2023, which gained Royal Assent only last month, will provide dedicated employment rights for carers for the first time. I congratulate the hon. Member for North East Fife (Wendy Chamberlain), my hon. Friend, on her work in securing the passage of her private Member’s Bill, because the Act is a game-changer.

Despite those successes, however, I believe that much more needs to be done. Carers have contacted me to let me know about key areas in which they wanted more support. If the House will indulge me for a little longer, I will run through some quotations. Bryony told me that she wanted carers to be given more financial support:

“Carer’s Allowance should be higher to reflect the impact and reasons it is claimed. I didn’t choose not to work; I didn’t choose to lose a well-paid career. I will always choose my son, but the financial burden is destroying families.”

Tracy talked about the need to be able to take a break from caring:

“Respite is essential. If carers reach burnout, the person they care for could end up in care sooner. If you support the carer and they feel valued without having to worry about finances, they would be less stressed and able to cope day to day.”

Rebecca called for greater recognition for carers:

“I feel we are overlooked by all the groups in society. It makes you feel bottom of the pile in everyone's priorities.”

Sarah said that she needed better signposting to the support available to help carers with their responsibilities:

“It would be fantastic if there was a directory of support and benefits that are appropriate as soon as a diagnosis is recognised. For years we didn’t claim Personal Independence Payment and Disability Living Allowance for our daughter because we didn't know about it. For over ten years I didn’t know I was entitled to Carer’s Allowance. I also didn’t know for the last three years my daughter was entitled to elements of Universal Credit. This would have helped us as a family and taken the stress and pressure off for myself to be able to ‘fight’ in other areas of my daughter’s life.”

The testimonies that I have shared are my reason for being here today, and the reason I support the call from the charities that are backing Carers Week for the Government to establish a cross-departmental ministerial group to focus on the help that carers need. I was delighted to learn earlier this week of the Minister’s commitment to establishing just such a group. Carers’ issues do not fall solely within the remit of the Department of Health and Social Care; they are everywhere, involving everything from energy prices to the circumstances of the young carers we have spoken about, carers in employment and carers’ benefits. The establishment of the ministerial group will ensure that carers’ needs are understood and responded to at the highest level of Government, and will improve ministerial oversight of policies and measures that support unpaid carers.

It is my hope, and that of the all-party parliamentary group on carers, that this work will lead to the development of a full and financially supported national carers strategy. Such a strategy would help to ensure that we went further in respect of a range of measures to help unpaid carers, including improved data sharing to ensure that carers are identified and support and entitlements are not missed; better support for and identification of carers at key transition points—for example, when people move from children’s to adult’s services; more funding for social care to ensure that unpaid carers are given the support that they need once they have been identified; and a review of carers’ financial support and benefits, including carer’s allowance, to ensure that they are fit for purpose and prevent financial hardship.

I want to encourage all those in the House today, and those watching the debate, to involve themselves in the activities taking place during Carers Week, and to reach out to the thousands of people in each of our communities who do so much to support the people whom they love. I also want to encourage all Members who have not already done so to join the all-party parliamentary group—I hope you do not mind the quick advertisement, Madam Deputy Speaker—which I co-chair with Baroness Pitkeathley. We have some exciting plans for the coming year.

Let me end by saying what I say every year. While Carers Week is an important opportunity to recognise, for one week in the year, the extraordinary lengths to which carers go, we must also recognise that they go to those lengths every single day. Every week should be Carers Week. Day in day out, year in year out, carers work to ensure that their loved ones are cared for, are safe, and lead the best lives that they can. That is something that happens 52 weeks of the year.

12:15

[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.

12:30

[Nickie Aiken (Cities of London and Westminster) (Con)]

I thank my hon. Friend the Member for Gosport (Dame Caroline Dinenage) for securing this debate. She is passionate about ensuring that we highlight the challenges carers face, and that we recognise the contributions they make to families and communities throughout the UK. I pay tribute to her excellent work as chairman of the all-party parliamentary group on carers.

In National Carers Week, it is only right that we reflect on and appreciate the 5.7 million carers in our country, while exploring what more we can do to support them both financially and practically. We also have to recognise that the number of carers will only increase. Life expectancy continues to increase as more people live longer with more health conditions and as children survive with conditions that, in previous generations, might have meant they never survived the womb, let alone birth—they are now living for maybe decades, and their parents have to provide most of the care.

Yesterday I was honoured to meet Age UK, the Carers Trust, Oxfam GB, the Motor Neurone Disease Association, Rethink Mental Illness and the Lewy Body Society at the National Carers Week parliamentary reception. These organisations are vital in supporting carers across the UK, and I pay tribute to their professionals and volunteers for the support they provide.

I understand, on a very personal level, the difficulties that being a carer brings. So many women, as my hon. Friend mentioned, have caring responsibilities—we know that women make up the majority of carers. Many of us are employed and keeping down jobs, and we often had our children later in life, so our caring responsibilities come at a time when our children need us, particularly as teenagers, and our parents need us because they are reaching an age at which they may have health issues. We are the sandwich generation, as is now well known. Believe me, I know it is not an easy task to juggle all these responsibilities.

I have personal experience, as I supported my mum when she was looking after my father after he was diagnosed with Alzheimer’s, and I saw the mental, physical and financial toll it took on her. What I take away from that personal experience is that caring is really, really lone, and it was particularly lonely during covid. I cannot imagine how it was for the millions of people who were isolated at home and having to look after a family member with a condition such as Alzheimer’s. The thing about Alzheimer’s is that we lose our loved one twice. We lose them as the Alzheimer’s and dementia progress, and then we lose them when they die.

I remember looking after my father for a week in August 2021, when my mum had a week of respite care. It was one of the hardest things I have done in a long, long time. I was trying to juggle my parliamentary work at the same time. Thank goodness for test cricket and the Hundred, because my father was an avid cricket fan all his life. When I was looking after him, we had the India test during the day and the Hundred in the evening, so that kept me sane. I do not know how the amazing carers across the country cope.

Because of my own experience, and because of speaking to so many carers across the Cities of London and Westminster, I was proud to support the Carer’s Leave Act 2023, which was introduced by the hon. Member for North East Fife (Wendy Chamberlain). I was delighted to sit on the Public Bill Committee, and I congratulate her on the Act receiving Royal Assent. It will make such a difference, as it means unpaid carers will now be entitled to at least five extra days off a year, helping more carers to stay in employment. According to Carers UK, 600 people a day leave work due to care duties, and the Act recognises that those people need the flexibility to take time off work for their loved ones.

In 2020, more than 7 million people in employment had the added responsibility of unpaid caregiving. Of course, those combined work and care responsibilities can lead to people getting very little rest, which explains why 71% of carers report having poor physical or mental wellbeing, according to the Mental Health Foundation. That is why I fully support the Government’s “Next steps to put People at the Heart of Care” report, which includes a £25 million funding package for unpaid carers, although I would obviously like to see that funding increase.

We must also remember that many carers are too young to be employed. I take this moment to recognise the role played by young carers, of whom there are approximately 800,000 across the UK, which is a staggering number. These children—they are often very young children —and young adults embody compassion, responsibility and maturity beyond their years. On average, young carers devote around 17 hours a week to their caring duties, according to Carers UK. Just imagine the sacrifices they make. Their selfless acts of love go unnoticed by many.

I was first exposed to this issue when I worked at the Children’s Society and was responsible for publicising a report on the lifetime effects of being a child carer. The report’s findings remain with me, because being a young carer has not only an immediate effect but a long-term effect on things like education, attainment and even personal and social confidence. I remember speaking to people who had taken part in the report—they were men and women in their 30s and 40s—and they still lived with what they called the shame of not being able to take friends home because they were embarrassed about what might be at home if their mum, as it usually was, had mental health issues, or of not being able to go to birthday parties or be proper teenagers with their friends because of their caring responsibilities. It has a lifetime effect on people’s confidence and life chances.

That being said, I am proud of the Government’s work to support young carers. Obviously there can always be more help, but through the extension of education, health and care plans to 19 to 25-year-olds, for example, thousands of families across the country have seen increased support.

I, like many Members in the House today, have spoken of the incredible sacrifice made by so many unpaid carers, whether financially or personally, but in National Carers Week we must not forget the professional care sector. We often speak about NHS doctors and nurses, who are so important, but the value of social care sector workers cannot be overestimated. I take this opportunity to thank our professional carers who support our loved ones in care settings and in their own homes. I saw that directly in how the outstanding carers looked after my father with such respect, love and devotion at the Bellavista care home in Cardiff bay before he passed away last year. My mum was a hairdresser working in care homes and day centres, and I used to help her in the summer holidays, so I saw the vital respite care that the Ely day centre in Cardiff gave to so many families.

Across the country, we see fine examples of sacrifice, love and selflessness every day, which is why it is so important that we have such debates—again, I thank my hon. Friend the Member for Gosport for securing it—to recognise and thank the carers, and particularly the unpaid carers, across the UK. It is also why I fully support the Government’s new support for carers such as the 2023-24 better care fund, with £327 million earmarked to support local authority health and care services, including providing carers with advice, support, short breaks and respite services. It is so vital to ensure that we provide respite for carers.

I know at first hand how important this extra funding will be. When I was a council leader, approximately 40% of our annual budget was spent on adult social care, so we need to continue funding councils in this vital work. I also note what my hon. Friend said about the need to undertake care assessments a lot quicker and in a much more caring way. I hope the Minister has taken note of that comment, too.

[John Howell (Henley) (Con)]

I hear what my hon. Friend said about young carers. Does she recognise that there is a problem in identifying all young carers and that we must do more to identify all those who are providing that care service but going totally unnoticed in society?

[Nickie Aiken]

I thank my hon. Friend for his intervention and completely agree with him on that. Part of the problem, particularly for young carers, is that they are embarrassed, but they may also think that they could be taken into care—I fear for them on that. They think that because they are having to look after a parent, a social worker and local authority will perceive that they cannot cope. That is the last thing that any family needs to think about. When I was the children’s services lead at Westminster City Council, I did a lot of work with young carers and we had an amazing support network in Westminster for young carers. They can be so young—as young as eight or nine—and it is therefore important that we identify them. We must also give them and their parents assurances that this is not about taking them away, but about giving the children and the parents the support they need.

I am also glad to see that the Minister is due to hold a cross-Government roundtable with other Ministers to make sure that carers’ needs are recognised not just in social care, but in every aspect of their lives. That is a theme we have discussed today. This is about not just the daily grind of caring—the responsibilities and the tiredness—but the financial and other help that is needed.

Making sure that carers are recognised in health, social care and education is a priority, along with helping people to recognise themselves as carers so that they can tap into local carers networks and apply for the financial support that is available. That will be crucial for carers across the UK. That is why I look forward to continuing my work with the Government to ensure that all adult unpaid carers and young carers across not only the two cities of London and Westminster, but the whole country, are supported financially, emotionally and physically. We owe them all a huge debt.

[Several hon. Members rose—]

[Madam Deputy Speaker (Dame Eleanor Laing)]

Order. It is obvious to the House that we have plenty of time this afternoon and there is not enormous pressure. I certainly do not wish to impose a time limit on speeches, but all so far have been longer than they ought to have been. I ask Members to keep speeches to under 10 minutes, because this is not the only debate today; another debate follows and it is fairly heavily subscribed. What Members have to say can usually be said pretty well in under 10 minutes, rather than in well over that.

I call Wendy Chamberlain.

12:42

[Wendy Chamberlain (North East Fife) (LD)]

Thank you, Madam Deputy Speaker. I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing this debate and on the work she does as chair of the all-party group on carers. The debate is testament to the work done by her and by other Members in the Chamber who have direct experience or have been involved in this space for some time. I have been on a bit of journey since securing a slot in the private Members’ Bill ballot and taking forward my work on carer’s leave. I wish briefly to pay tribute to a number of groups I have met while doing that. In St Andrews, we have a group, supported by Fife carers, called the CRAP Carers—compassionate, responsible and patient carers. It is a remarkable group, mostly made up of women—the hon. Lady mentioned how many of our carers are women —and they do incredible work to support their loved ones. I also want to highlight Fife Young Carers, which sadly lost its chief executive officer, Kirstie Howell, last month. I pay tribute to her and the work she did.

It is estimated that Scotland has up to 800,000 carers. My husband is one of them, as he looks after his mother, although he continues to refuse to recognise himself as such. The hon. Lady referred to a number of the challenges they face and the statistics on that. According to Carers UK, 45% of carers are currently unable to afford their monthly expenses and 83% are worried or extremely worried about managing them in the future. One of the most distressing things for me is that a third of carers are spending more of their money on products that they use for care, such as incontinence pads. The money is not coming to them from elsewhere and they are having to use their own resources for those things. Three quarters of carers receiving carer’s allowance or the carer element of universal credit are worried about energy bills and other bills, and are concerned that they will be unable to heat their home to a safe level. We know, and have discussed in this House many times, that it costs even more money to be disabled, and a number of people care for those with disabilities. We need to be aware of that.

We must not forget our young carers. We are waiting for the census results in Scotland, but the census in England and Wales shows that about one in 21 of our 16 to 24-year-olds are carers. They face difficulties with finances and accessing education. During my work on my Carer’s Leave Bill, I became concerned that we could create conditions where young carers will never have the opportunity to enter the workplace, particularly given the cliff edge that carer’s allowance presents.

I wish to highlight the story of one constituent, who wishes to remain anonymous, as it demonstrates some of the challenges. She cares for her elderly mum, who has Alzheimer’s, mobility issues and long-standing mental health issues. There is live-in care, but she still spends hours on care and care-related administration. Another source of guilt for carers is that they are spending so much time on the admin associated with caring that they feel they are not getting the opportunity to do the caring. Nursing visits happen unannounced, so they do not have proper information and she does not have the time to arrange to be there sometimes. Telephone appointments with GPs and hospitals are not at definite times. She describes putting her camera and mute on during Teams meetings to answer calls, rather than miss an appointment; that is a difficult balance for carers who are working. She says:

“Personally, I have felt unable to commit to a full time workplace based job for a very long time because I feel I would end up letting my employer down as care stuff with mum takes up so much time or I would end up too ill to work myself. It’s not actually being present for Mum physically in our situation that takes the time now but the admin and domestic and financial matters and dealing with health professionals and issues arising with carers that takes time every day. To have enough flexibility at the moment I work several part time short contract jobs and so lack job security and have a lower income.”

We know that women in retirement face challenges because they have lower pension contributions to access, and these kinds of situation embed that. My constituent has described wanting to go back into full-time work and starting the process, but she has had to withdraw because of her mum’s health. That risk of leaving the workforce is high. I struggled to find constituents who would benefit from my Bill because many who were caring had already left employment. I am delighted to see my Bill become law, because for the first time unpaid carers have employment rights, but there is much still to do. I still think that carer’s leave should be paid, because carers need and are entitled to it.

We need to think about putting in place more carer-positive policies. I have been encouraged by my work with Carers UK and the positive employers it works with. The hon. Member for Motherwell and Wishaw (Marion Fellows), who is in her place, and I are Carer Positive-recognised businesses in Scotland; we went through that accreditation process. This would be a great thing for other parts of the UK to look at. I thought I was a good employer, but having to think about how I would approach certain circumstances made me consider how I can be more proactive.

On carer’s allowance, a quarter of carers receiving carer’s allowance or the UC element are using food banks to manage. Over the past 12 years, carer’s allowance has increased by only £15.20 per week, and there is also a limit on how much people can work. I met young carers earlier this week, and the limit while in education is 21 hours per week. The new T-levels, which the UK Government describe as a “gold standard” for young people, involve more than 21 hours a week. People doing T-levels who are caring will, therefore, be unable to claim carer’s allowance. The Scottish carer’s support payment is being rolled out in Scotland, and a number of the challenges I would raise in respect of carer’s allowance are being examined there, but, as always, we can do more.

Too many carers receive little or no wraparound support. We must not forget those who are full-time carers and unable to be in employment or education. In many ways, it feels like they have been forgotten. A statutory guarantee for respite breaks for unpaid carers is important: I have been contacted by several constituents who have highlighted the importance of respite, particularly for those who are sandwich carers. One said to me that, looking back on caring for her elderly mother over the course of her own retirement,

“it was the respite we missed and desperately needed more than anything at the time. We missed doing things together in our latter years, and nothing can bring those years back.”

I wish to highlight two places in my constituency. There is the Rings, near Chance Inn, where Moira and her team provide holidays for those who want to take breaks with their loved ones. The facilities and the efforts and care they provide are huge. Then there is Homelands in Lundin Links. What has been highlighted to me is that a number of our big hotel chains do not necessarily have all the disabled access and facilities that carers need to be able to take their loved ones on holiday, and to give them that degree of respite that a holiday would give. We should be requiring our hospitality services to do more. Again, I highlight the really good work of Euan’s Guide—basically, it is a Tripadvisor for disabled people—which I worked with in my previous job at Diageo. It provides an opportunity not just for disabled people to provide comments on facilities, but for businesses and organisations to talk about what they are doing.

To keep to your timescale, Madam Deputy Speaker, I will just mention briefly that my hon. Friend the Member for St Albans (Daisy Cooper) tabled an amendment to the Health and Care Bill that would have put a legal duty on the NHS to identify unpaid carers. Sadly, that did not receive Government support. I also highlight the previous private Member’s Bill of the hon. Member for Worsley and Eccles South (Barbara Keeley).

There is a huge gap between the number of people who are seen to be providing care, or who have provided care, and those who see themselves as having done so. As a result, Carers UK estimates that 19 million people are missing out on support. I hope that my Act will start some of those conversations, so that people recognise that they are caring. Another issue is ensuring that it is not just people doing the physical care on the ground who are seen as carers. I highlight the admin issue here.

Finally, I highlight the private Member’s Bill of my hon. Friend the Member for North Shropshire (Helen Morgan) on carers and care workers, which, as well as reforming social care, would require the Government to carry out an independent assessment of support available to unpaid carers, including financial support and employment rights. The Government may not support it, but, hopefully, with the work that they are doing on the cross-Government ministerial group, they will recognise that there are elements of it that they can take forward.

I thank everybody in the House who has helped me to bring my private Member’s Bill forward. I thank, too, all the organisations that have engaged with us. The Bill is very much a first step, and I am sure that all of us here are thinking about what we can do next.

12:52

[John McDonnell (Hayes and Harlington) (Lab)]

I will try to get through my 10-minute speech as rapidly as I can, Madam Deputy Speaker.

I chair a group of unpaid carers, and have been doing so for the past 18 months. They are all Labour party supporters. It is a Labour carers group because we seek to influence our own party’s policy. It is not set up on a sectarian basis; it is just that that is the motivation for our coming together. I wish to report back on some of the issues that have been raised in our discussions, and they reflect much of what has been said already.

One key issue is ensuring that carers are properly recognised. Recognition should then lead to the assessments. The reports that we get are that it is almost impossible in some areas to secure an assessment. We have to be honest in this debate. I am not trying to be party political here, but this is, I am afraid, about the cutbacks in local government. Councils are not capable of undertaking the assessments themselves, because of the loss of staff over recent years. Unfortunately, lack of assessments means lack of access to services themselves. That lack of a passporting mechanism is causing incredible suffering.

Another issue is that, even where there are assessments, there is a real concern about the lack of fully trained staff in the range of specialisms to deal effectively with the people involved. What that means is that the assessments are sometimes crude—this is not a criticism of the staff—and do not reflect the reality of what is needed. Again, this comes back to the resourcing of both the local councils and the NHS.

The other issue is exactly as reflected in the debate so far, which is that unpaid carers are often living in absolute poverty. Many of them have given up their own careers to care. They do so willingly, because they want to care for their loved ones, but at the moment many of them cannot survive on the benefits that they are receiving. We are grateful for the meetings that we have had with my hon. Friend the Member for Leicester West (Liz Kendall). The request of many in the group is clear: they want a real living wage to reflect the care that they provide. In the short-term, a measure that could be introduced fairly rapidly is at least for the carer’s allowance to reflect other caring allowances, such as maternity leave. Benefits in the past have been linked to earnings, but, because of the break with earnings, some benefit levels have been undermined over the past 20 to 30 years. If this carer’s allowance had kept pace with earnings, it would be double what it is at the moment, which would be somewhere near to the levels of maternity leave payments.

The other issue that has come up in our discussions is the plight of external carers. There is almost a sympathy for them—or an empathy with them—from the unpaid carers. As has been said, carers who go into homes are underpaid, not recognised and often disrespected. We must acknowledge that care has largely been privatised, which means that many of the workers are on very insecure contracts. The result of what I can only regard as exploitation is that they cannot provide the care that is needed in many instances, or that they struggle to do so.

I will not dwell too much on the issue of respite, which has been covered. None the less, the lack of access to, and the withdrawal of, respite in many areas because of cutbacks is causing real concern. The Government could focus on that as a priority in the development of their initial strategy.

Another concern, which is heartrending to hear about, is from those carers who are elderly or getting on. They are worried about the succession planning of care for the children or the people whom they care for when they are no longer around.

[Hannah Bardell (Livingston) (SNP)]

Does the right hon. Gentleman agree that the Primodos case highlights the tragedy that our constituents face? I have constituents who have suffered at the hands of Primodos and they are genuinely concerned as they get into their elderly years about how they will be able to care for their children, while the Government remain intransigent and refuse to support them.

[John McDonnell]

I am glad that the hon. Member has raised that issue. I have constituents in the same situation, and that overhanging worry has come out in our conversations. People worry about what happens when they are no longer here, or are not capable of caring. Having some form of succession plan in place is critical.

Briefly, there is a demand from the group that I work with—I think this is felt across the political spectrum—for an independent living and national social care service. The argument is that this should be based on the NHS principles: free at the point of need and paid for directly through taxation. The proposals that I have heard so far, including those from the Fabian Society which were published today, are somewhat limited and do not live up to the challenge that we face. They are somewhat anaemic.

We must be honest with everybody about the scale of the costs involved and how that can be funded. I am happy to run through a whole range of taxation measures, but I shall just put on the table equalising capital gains tax with income tax, which, the TUC estimates, would provide £17 billion. That would cover the cost of introducing social care and independent living services. That requires political will and political courage, so there is the potential to go forward and form a cross-party alliance to secure a future for social care and support for unpaid carers.

I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing this debate. After the session yesterday where we met the different caring organisations, I would say that, if anyone wants any motivation, all they have to do is sit down with a few of those carers to realise how urgent and how desperate the situation is at the moment—and what willingness there is across this House to secure quite radical transformative change on the issue.

13:00

[Ben Lake (Ceredigion) (PC)]

Diolch yn fawr, Madam Deputy Speaker. It is a pleasure to follow the right hon. Member for Hayes and Harlington (John McDonnell). I echo what he said about how moving and inspiring it was to speak with unpaid carers yesterday in Parliament. I agree that even the briefest of conversations with an unpaid carer leaves us in no doubt about the urgency of the situation and the importance of ensuring better support for them.

I will keep my comments brief, as other hon. Members have already outlined the importance of this debate far more eloquently than I could, but there are two points I would like to impress upon the House. The first is that unpaid carers, as well as caring for their loved ones, make an incredible contribution to society, one that I think we need to value more. The second is the need for us to bring about a situation where they are given better financial and practical support.

Others have already mentioned the urgency of the situation, not least due to the rising cost of living and the financial pressures that that is imposing on many families and unpaid carers. In my own constituency, sadly, 72% will be off the mains gas network and reliant on heating oil, for example, to keep their homes warm. For those with caring responsibilities, it is essential that they are able to heat their homes, not just through the harshest of winter months, but through the shoulder months. They already have to pay a great deal more than some of their neighbours who do not have the same requirements and caring responsibilities.

[Hannah Bardell]

My hon. Friend spoke about the importance of local organisations. Will he join me in congratulating Carers of West Lothian, which celebrated its 30th anniversary this year? The group does incredible work in my constituency and truly is the backbone of our community.

[Ben Lake]

I am grateful to my hon. Friend for that intervention and I congratulate the group in question. In Ceredigion I know there are many charitable organisations that do great work supporting unpaid carers, as indeed do local authorities. My own county council does its very best to ensure that the unpaid carers it is aware of are given advice, support where possible, and resources so that they know of the various types of practical and financial support available to them.

Such initiatives are important; in a place such as Ceredigion it is estimated that more than 7,000 people are unpaid carers, equivalent to 10.5% of the population, and they make an incredible contribution. Other hon. Members have mentioned the value in financial terms of the contribution that unpaid carers make to the health and social care system. In Ceredigion alone, our unpaid carers make a contribution worth some £700 million a year. That is an incredible contribution and, to be frank, it ensures that local health and social systems do not collapse under the rising demands they face.

Nevertheless, as has been mentioned, some 73% of those who are caring or who have provided care in their lifetimes do not identify themselves as unpaid carers. That means it is difficult to understand truly how many are in need of support, whether financial support or respite and other practical measures. I very much support the calls of other hon. Members for measures that will force public authorities in particular to seek out and identify unpaid carers in the realms of both education and the NHS. If we do not know how many people living in our communities are unpaid carers, it is difficult to effectively plan for services such as respite and day centres. I know from speaking with unpaid carers in my constituency that those are vital lifelines, but lifelines that, sadly, are being cut back.

I will end my comments by dwelling a little bit on financial support for carers. We have heard about the ways in which the rising cost of living is having a serious impact on their finances and how many unpaid carers are deeply worried about their financial prospects. Just under half already say that they are cutting back on essentials. We also know that more and more unpaid carers are having to spend their own money and resources to procure essential items, such as incontinence pads and other equipment, for their loved ones. I think most hon. Members in this debate would agree that those types of supplies and equipment should be provided by the state and not something that carers should have to dip into their own savings and resources to buy.

I also want to point out the inadequacy of the carer’s allowance. One important thing we should bear in mind about the structure of that allowance is that the thresholds imposed mean that many people are not eligible for or entitled to the support, despite the fact that they give hours and hours of unpaid care every week. The right hon. Member for Hayes and Harlington also outlined the inadequacy of the current level of the payment itself.

In a poll conducted by YouGov earlier this year, some 84% of those asked thought that unpaid carers should receive additional financial support. There is clearly widespread public support for increasing the support given to unpaid carers. When we consider the £162 billion contribution that unpaid carers make every year just across England and Wales—£700 million in Ceredigion alone—it is high time we looked again at carer’s allowance and the direct financial support that they are given. They give so much to society; it is now time for society and the state to pay them back.

13:06

[Marion Fellows (Motherwell and Wishaw) (SNP)]

I hugely congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing this really important debate and on the work she does with the APPG.

Here we are again in National Carers Week, and things have not improved tremendously since the last time we had this debate in Westminster. Carers UK wants this week to be about communities across the UK coming together to recognise the huge contribution that unpaid carers make to society. Politicians—that’s us—employers, that’s us as well; health and social care services; businesses; education providers and members of the public all have a role to play in raising awareness of caring and making sure carers are able to access the information and support they need.

Like many others here in the Chamber, I went to the parliamentary reception yesterday, where I met Karen, among others. Karen told me her story and how she gave up a high-flying job with a really good salary, right at the start of the pandemic, to take care of her mother. She did so willingly, but it was a full-on job—in fact, so full-on that she did not have time to apply for any kind of carer’s allowance. Three years on, she finds herself almost bankrupt and in danger of losing her home. I think that shames us all. I pay tribute to Karen and folk like her, who are taken for granted. They save the economy billions of pounds and they do not always come out of it well enough, even though they have done the very best they can.

I also pay tribute to two organisations in my constituency, Lanarkshire Carers, which works in Motherwell and Wishaw—it has just been recognised as an exemplary Carer Positive employer in Scotland, which is fantastic news—and North Lanarkshire Carers Together, which attends the regular meetings of the poverty action network that I have set up locally. Both organisations do such immense and positive work to signpost carers, helping them to get money and respite, ensuring that they are included, providing short breaks—afternoon caring time—and even just allowing paid and unpaid carers to talk to others, which is a huge help.

[Wendy Chamberlain]

I, too, visited Lanarkshire Carers over the recess, in neighbouring Hamilton, and I heard about the exemplary award and the innovative ways in which they have approached things since the pandemic to ensure that they reach out to carers. They are a best-in-class organisation, and the hon. Lady is very lucky to have them.

[Marion Fellows]

Oh, I know. I thank the hon. Member for her intervention and for the Carer’s Leave Act 2023, which she piloted through Parliament—it will make a difference. I ask the Minister to please listen and give carers some money for the five days off to which they will now be entitled.

Last month, the chief executive officer of Carers Trust told the Work and Pensions Committee that, as Members have noted:

“Carer’s allowance is devolved in Scotland, so there has been a big focus on increasing the adequacy of the benefits. Part of that has been around focusing support on 16, 17 and 18 year olds who are unpaid carers. There have been financial payments, payments of £300”—

quite a lot of money for a young person—

“to allow them to access broader life opportunities, given so much is not open to them.”

They also get a Young Scot card, which gives them free transport, discounts and other things. It also looks as if the Scottish Government will remove the 21-hour rule for study, and I hope that the UK Government do not intervene against that, because it is important. A young carer needs the opportunity to enhance their education and better equip themselves for further work.

In Scotland, we really try to support and help carers. We know how much they contribute to our economy. It has been estimated that there are about 800,000 carers saving the economy £3.1 billion a year—that is an enormous amount of money. We also have to face the fact that most carers are women, and that leads to lower pensions. The gender pay gap already means that women do not get as good a pension as men, but the fact that more women than men take up caring responsibilities mean that they are being hammered twice.

The Scottish Government are very keen on stakeholder engagement. As with the national care strategy that they recently announced, nothing is done without talking to stakeholders. I am very proud that one of my former employees, Sophie Lawson, is working on a Scottish Government initiative on this topic—good luck to her. Sophie works for the Glasgow Disability Alliance, which has done a lot of good work with carers.

I have been the SNP’s Westminster disability spokes- person since 2020, but appallingly, it was only last year that it really dawned on me that there is a huge link between people with disabilities and carers, and how much we all owe to carers, who help the most undervalued groups in our society. Unpaid carers cover all parts of society, but they can often be marginalised. That is where local organisations are useful. I know that is happening all over the country.

One thing that I hope the Minister will recognise is that 29% of carers in the most deprived areas across the UK care for 35 hours a week. There is a real link between ill-health, poverty and the fact that so many people have to give up work to care for their loved ones. There is also real stigma, as has been mentioned. Many people who are cared for do not recognise that they are being cared for, and that can prevent their carers from accessing organisations and help from other people.

I am aware of the time that I have taken, so I will finish. I hope the Minister has listened very carefully to everyone in the Chamber, and will consider what is happening in Scotland. This is an important issue, and it needs to be addressed, especially now, during this cost of living crisis.

13:15

[Liz Kendall (Leicester West) (Lab)]

I am very pleased to speak in the debate and congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing it. I always feel privileged to speak on behalf of His Majesty’s Opposition, but this issue is close to my heart. Across the country, millions of us are doing what any daughter or son, husband, wife or partner, mum or dad would do when someone they love is sick, frail, elderly or disabled: look after them the very best we can.

It can be hugely rewarding to care for the person who means so much to you and who has helped you so many times. But it can also be a terrible struggle: trying to hold down your job, or travelling up and down the country, while battling to get your mum or dad out of hospital; spending hours arranging seemingly endless NHS and care appointments on the phone, wondering why on earth no one else seems to be talking to each other; searching for the right home care, or a care home that you can actually trust; and figuring out what help, if any, you or the person you are caring for are entitled to, financial or otherwise. The pressure, stress and, often, guilt, can wreak havoc with your own physical and mental health. The financial costs can be ruinous, too, especially if you just cannot make it all work and have to quit your job. Most of the time, you just feel ignored or invisible—not just to all the different services that you are battling with, but in your workplace and in wider society.

Hon. Members have spoken powerfully about their and their constituents’ experiences, about what needs to change to improve the lives and life chances of Britain’s amazing army of unpaid carers, and about the need to better recognise and improve support for the physical and mental health of family carers who are battling to see a GP, or anyone else. They are not even getting the statutory assessment to which they are entitled under the Care Act 2014, not least because of the cuts to local government services. There is a real need for breaks—not just physical breaks from caring, but something for carers to look forward to and to help them keep going. Many carers face poverty: a quarter have to cut back on the essentials of life and people sell everything they have just to try to keep the show on the road.

The real implications of providing care when young include the sacrifices you make of your hopes and dreams, and the shame that you feel, which often never leaves you. On finding out who is a carer in the first place, let us be honest: most people do not think that they are a carer—they are just trying to be a good son or daughter, husband or wife—but without that recognition, they will never get any help.

Those issues are not new, but they are growing. After 13 years of failure on social care reform, on top of covid and the cost of living crisis, the pressures on families are becoming unbearable. However, the argument that I will make is not the moral case for transforming support for unpaid family carers, although that is a case in which I firmly believe; it is the economic case, particularly the need for us to start to see a decent social care system as part of our country’s economic infrastructure, not just as a vital public service.

We live in the century of ageing and, as we all live for longer, more and more of us are going to have to work and care for longer. Almost 5 million people are already juggling work with caring for an older, sick or disabled relative. That is one in seven of all workers and it is only going to increase. The burden often falls on women, especially those in their 50s and 60s. The latest census shows that one in five of all women aged 55 to 60 are caring for an older or disabled loved one. That is a staggering figure that has received far too little attention to date.

The fact that our care system is stretched to the absolute limit means that 2.5 million unpaid carers have had to give up work or reduce their hours because they cannot get the help they need. Let us look at the increase in economic inactivity in over-50s since the covid pandemic, which there has been a lot of focus on. We know that the primary reason for this increase is poor physical and mental health and the increasing waiting lists in the NHS, which are now at a staggering 7 million. The second biggest reason, which no one has mentioned so far, is caring responsibilities.

Being forced out of the workplace is not good for families, especially in a cost of living crisis. It is not good for women and women’s equality, because women in their 50s and 60s are in the prime of their lives, with all the experience and knowledge they have. It is not good for businesses, which need to draw on the talents of everyone in our country in order to succeed, and it is not good for our economy, especially when the UK is stuck in a doom loop of low growth, poor productivity and ever higher taxes. If we want to help the over-50s to stay in work or get back into work, I suggest that the Chancellor spends a little more time focusing on the broken care system and a little less complaining about people spending too much time on golf courses.

We know that decent public services require a growing economy to put the money in, but the truth is that a growing economy depends on decent public services too. In modern Britain, social care and, I would also argue, childcare are as much a part of our economic infrastructure as the roads and the railways, and they should be at the heart of our economic policy and strategy for growth.

That is why Labour has made improving care one of the four missions of our industrial strategy—we understand that it is central to the workforce and economic growth. We are calling for a 10-year programme of investment and reform. That must include a new deal for the paid care workforce. We are never going to help family carers unless we have enough properly paid staff and tackle the record vacancies and high turnover rates. We need to have a much more joined-up system of health and care, so that families do not have to battle their way around the system, and a big shift in focus towards prevention and early intervention, to help people stay living fit, well and healthy at home for as long as possible.

We also need proper support for unpaid family carers, so that they can better balance work and family life, including improvements in flexible working and care leave. Opposition Members will remember that Labour women in the ’70s and ’80s argued that childcare was vital for children, the workforce, the economy and women’s equality, and that is the case we are making on social care too.

Madam Deputy Speaker, I am sure you will agree that sometimes politics seems very frantic, with things changing day by day, but sometimes I think it is all so unbelievably slow in understanding how the world has changed around us. My mum often says to me, “Why are you so surprised that there are so many of us olds? We’ve been born a long time.” That is true. We need to wake up to these changes and understand just how important a decent social care system is for families, the NHS, women’s equality and our wider economy too. The last Labour Government had a national carers strategy signed up to by senior Cabinet members at all levels, looking at all the things that impact on family life. I urge the Government to commit to that strategy today.

11:29

[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.

13:35

[Dame Caroline Dinenage]

I reiterate my thanks to the Backbench Business Committee for allowing us to have this debate today. I thank both the Minister and the Front-Bench spokesman, the hon. Member for Leicester West (Liz Kendall), for showing that they both understand and care about this issue. I also thank all the Members who have taken part: the hon. Members for Worsley and Eccles South (Barbara Keeley), for North East Fife (Wendy Chamberlain), for Ceredigion (Ben Lake) and for Motherwell and Wishaw (Marion Fellows), the right hon. Member for Hayes and Harlington (John McDonnell), and my hon. Friend the Member for Cities of London and Westminster (Nickie Aiken).

Many Members shared their own personal experiences; I kicked off by talking about mine, when my mum cared for my grandmother who lived with dementia. I think it is only now that I am probably at a similar age to my mum in that caring role that I fully understand what she was going through and the toll that it would have taken on her own wellbeing. I put on record today—because I have never had the opportunity to do so—my thanks to her, and to the 7,000 carers in my constituency of Gosport and the millions across the UK. They deserve our thanks.

In many cases, what those carers do is so invisible. I know that they do not do it for thanks—they do it because they love the people who they care for—but that does not mean that we should take it for granted. It means that we need to recognise them and value them, and to put our money where our mouth is when we do that. It means that we need to provide them with support, funding and respite, and with everything they need to continue doing their role, because it is thankless and hard. I know that they probably would not have it any other way, but that does not mean that it should be done for free. The final thing I will say to the Minister today is that we need a national carers strategy to bring together all that good work, and to demonstrate to carers that we do care.

[Madam Deputy Speaker (Dame Rosie Winterton)]

I know that the young people from Balby Central Primary Academy will have enjoyed the contributions made about carers, particularly young carers.

Question put and agreed to.

Resolved,

That this House has considered National Carers Week and respite for carers.