National Carers Week

Caroline Dinenage Excerpts

Thursday 8th June 2023 Commons Chamber

[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.

--- Later in debate ---

[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.