National Carers Week

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.

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.

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.”

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.

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 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.

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.

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.”

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.

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:

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 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?

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.

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.

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.