Motion to Take Note
My Lords, following the publication of the Carers Action Plan 2018-2020: Supporting Carers Today on 5 June, which supports a clear commitment to focus on carers in the forthcoming social care Green Paper, I thank all noble Lords taking part in this debate and very much look forward to hearing everyone’s contribution. This timely debate on the action plan focuses on the immediate term and action for the medium term.
The question posed must be: how can we improve support for all our carers, young and old? Three in five people will become a carer at some time in their lives. There is no discrimination: carers come from all different backgrounds and ages and I am pretty sure that we all know one who is close to us. Identifying our carers in many instances requires sensitivity, as not everyone may want to be called a carer, because sometimes cared-for people see that as a loss of independence. There must be a piece of work that encourages carers to self-identify and to find practical incentives; and, importantly, that raises their pride, gives them recognition and instils confidence, so that they view the seeking of support as a positive act.
The need is there where—because of, say, a road traffic accident, a stroke or time moving on and an elderly relative becoming frail—carers are the indispensable family members, friends and neighbours within our community. They are the vital partners bridging the gap between local health and the care service, with an amazing one in 10 of the population classed as carers. In some cases, unpaid carers are forgotten about, but their role in our society is vital. Caring for others should not be to the detriment of a carer’s health and well-being. How can we do more to reflect their lives now, as well as supporting their health and financial concerns?
Caring for someone with a disability is a huge responsibility, and most people become carers because someone close to them relies on them, but too often we hear that many feel isolated and not valued. A simple family trip out can bring its own rewards, but it is not always as simple for people who are not able-bodied, so I am pleased that local authorities such as mine are stepping up to the plate and addressing this problem by providing Changing Places toilets in many of their facilities. Good local public services are the essential bedrock for physical and mental health, well-being and resilience.
As our population continues to age with more people living longer—many with complex needs—more carers will be needed and, it therefore follows, more needs for more carers. Today’s debate is an opportunity to highlight and go some small way to help raise the profile of carers and caring within families and society in general. We must recognise even more the enormous contribution a carer makes, creating a clear framework that brings together local authorities and the NHS, producing an holistic approach to planning for the future and targeting resources, placing carers at the heart of any social care proposals. I am pleased that, in addition to the extra £130 million carers’ breaks funding in the better care fund, there is a commitment in the Carers Action Plan to develop examples of best practice that can be circulated around local authorities to make sure that they all reach the highest standards.
Raising public awareness must have top priority for employers, public and all professionals, so that the rest of the population is made aware what carers do and how important their role is within their communities and the economy. It is important, too, for them to have access to financial support and, when the time comes, to support in returning to employment. In GPs’ surgeries, a carer can gain that vital bit of information and advice and quickly be signposted in the direction of care support. One question asked many times in the context of continuity and connectivity is whether the Government could look at the possibility of a named social worker to be allocated to a carer.
The number of young carers in the UK has now risen by more than 10,000 in four years, with those aged 16 and 17 seeing the largest rises during the same period, up by 54% from 1,400 to 2,150. There are instances when young carers are unable to pursue their own aspirations because of the amount of caring responsibilities while, at the other end of the spectrum, others can experience a sense of pride and achievement. What is abundantly clear is that they need the right support at the right time. We must ensure that our young carers are not left behind, so action is required to ensure that they and their families are fully supported. Regular respite care, too, would allow time for study and other activities—raising awareness among teachers and schools about being backed up if they need mental health support and counselling. I am pleased that young carers are explicitly mentioned in the action plan and within the identification project—work with Carers UK to help to make sure that those young carers are found—and that the DfE has committed in its Review of Children in Need to making sure that young carers get the educational support that they need both in and out of school, so that their educational attainment is reached.
Young carers look after relatives who have conditions such as a disability, an illness, a mental health condition or a drug or alcohol problem. Most young carers look after one of their parents or care for a brother or sister; as they say, they are the hidden army. Their day-to-day responsibilities often include cooking, cleaning, shopping, and providing nursing and intimate personal care, as well as giving emotional support, financial management and caring for siblings. They can even be a crucial communication link by being the primary translator in a non-English speaking family, being responsible for GP appointments, and doing the cleaning and washing—so much to do.
We face population projections for England for people aged 65 and over rising from 9.7 million in 2015 to 14.5 million in 2035, a massive increase of 49%. Numbers of those aged 85 or more are projected to rise faster during this period, by over 122%, from 1.3 million to 2.9 million in 2035. Much of that increase is attributed to a projected rise in male life expectancy.
Another area where the right questions need to be asked is in the hospital setting, where hospital personnel need to ask more questions when working with vulnerable adults and adults with chronic or long-term illnesses, well before discharge. I particularly mention the emotional support needed for carers of people with dementia, who experience a constant strain and a great deal of distress, 24/7.
We have to make it everybody’s business and, in so doing so, raise the profile, with this debate today being part of conveying all this information to help people, so that the public understand and stop and listen just a little bit more.
Finally, as we know, this year’s Carers Week ran from 11 to 17 June and called on all communities, healthcare professionals, employers and the wider public to support carers to get connected to health and well-being services. It was a celebration of the enormous contribution that unpaid carers make to our communities. I am not forgetting our Armed Forces too—I hope that this can be conveyed to all local authorities so that they are also aware and so that the carers’ message can be embedded into the Armed Forces covenant. During Carers Week, there were lots of intensive local activities and many awareness-raising activities across the UK, with carers receiving the recognition that they truly deserve. As carers’ invaluable contribution deserves to be recognised, the message is very clear: identify early, supported by clear signposting, and get the right information and financial support at the right time, therefore avoiding any U-turns and culs-de-sac and making sure that carers are at the heart of all our future decisions.
My Lords, I thank the noble Baroness, Lady Redfern, for securing this debate, for her introduction and for reminding us how personal caring is to most of us. Most of us will either be a carer, have been a carer, expect to be a carer or certainly know someone who is. That is hardly surprising since, today, 6,000 new people, new carers, will take up their role throughout the United Kingdom—there are 6,000 every day.
I have been involved with the carers movement for more than 30 years, from a time—I know it is difficult to remember now—when the contribution of so-called “informal” carers was barely acknowledged. Indeed, the word was not even in the dictionary and was frequently mispronounced as “career”. So I have witnessed and been involved in many initiatives, such as the Carers Actions Plan, which aim to bring about important changes in the lives of United Kingdom’s 6 million carers.
In the mid-1990s, there were three Private Members’ Bills, each supported by the Governments of the day, which first gave carers statutory rights. I had the interesting experience of first being a campaigner lobbying Parliament on the first of those Bills and, by the time of the third one, being a legislator helping to work to pass it. Much later, there was what we call the “great leap forward” of the Care Act 2014, which further strengthened those rights and about which we were all extremely hopeful.
Alongside legislation there have been developments in strategy. The first national carers strategy was published almost 20 years ago and focused on improving the quality of life for carers through improved support and care. In 2006 came the New Deal for Carers and an updated strategy was published in 2008. This promised that, by 2018—this year, I remind your Lordships—the vision in that 2008 document would be universally recognised, so that carers would be valued as fundamental to strong families and communities and, specifically, as the document said:
“Support will be tailored to meet individuals’ needs, enabling carers to maintain a balance between their caring responsibilities and a life outside caring, whilst enabling the person they support to be a full and equal citizen”.
Few would claim that this vision has been achieved, especially not the carer I spoke to on Monday—a woman in her 70s caring for a partner in his 90s. “You get so lonely”, she said. “People stop calling because he’s so difficult. I’ve lost all confidence and feel I just lurch from one crisis to another with no one caring about me”. No wonder that in the Carers UK survey, published for Carers Week, 70% of respondents said that their own mental health had been affected as a direct result of their caring. In addition, more than 60% said that their physical health had worsened.
Let me return to history. Little attention was given to the carers issue between 2010 and 2016, when the Department of Health sent out a call for evidence in anticipation of an updated carers strategy. Nearly 7,000 carers responded, but the strategy did not appear—caught up, no doubt, in the unexpected general election and the problem of social care suddenly becoming political dynamite. The Government recognised that this delay was causing much concern and, to their great credit, decided on an interim measure, the action plan, responding to many of the concerns which were expressed in the call for evidence.
The document is in fact more of a summary list of work being done or planned than an action plan, but it has none the less been welcomed by the carers sector. Three things in particular have found favour. First, there is the emphasis on the importance of cross-government working, recognising that the needs of carers go far beyond the remit of the Department of Health and Social Care. Other department Ministers have signed up to the action plan and have agreed to a core plan of delivery for the next two years.
The second thing that has been welcomed is exploring the possibility of dedicated employment rights for carers alongside the existing employment rights, mentioned by the noble Baroness, such as the right to request flexible working. This is further recognition that one of the most helpful things we can do for carers is to enable them to remain in paid work as long as possible or to return to employment at the end of their caring period, thus helping to prevent the poverty which is so often associated with caring.
The third welcome thing is the carers innovation fund, also mentioned by the noble Baroness, to develop creative and cost-effective models of support. This is linked with the implementation of the Care Act 2014, which, while it had great aspirations, has proved to be less helpful than we had hoped with regard to carers assessments or access to breaks, largely because of financial pressures on local authorities. The proposed single assessment process, which is being trialled in Gloucestershire, Lincolnshire and Nottinghamshire, will take into account the health and well-being of carers, as was always intended in the Care Act.
These initiatives are very welcome, but—and there are some big buts—the issue of additional resources to fund support for carers is conspicuously absent, which has been greeted with disappointment by the sector. The financial problems of carers themselves, which always feature very strongly when you talk to any carer, are also largely ignored. Carers constantly report severe financial problems because of the inadequacy of the carer’s allowance, the complete inability to amass any kind of savings, and the increasing pressure to pay for any support service.
A carer I met last week, who is a 24/7 carer for her 89 year-old husband—she is 80—said:
“My local council is now charging me for the two hours’ respite they give me each week”—
that is two hours out of her 24/7 caring. She continues:
“They say I can afford it. I can’t, so we will have to do without it”.
It is hardly surprising that her physical and mental health is, as she says,
“getting worse by the day”.
She also describes herself as “confined by love”, which is a reminder that caring takes place in an existing relationship of love or duty, or a combination of the two.
Some groups of carers are given more attention than others in the action plan. As it happens, we understand the needs of young carers very well nowadays, although there is a question about whether there should be any such thing as a young carer, since if proper support services were given, they would not need to step up to the plate. However, the needs of older carers, especially of spouse and partner carers, who often provide mutual support in an increasingly fragile arrangement, remain relatively overlooked and poorly understood. However, I am pleased that the Minister is committed to a twice-yearly review, and we must ensure that this continues to give momentum to a strategy for which carers have been waiting so long.
In my 30 years’ experience, successive Governments have identified and signed up to the need to value and support carers. Given that most of us will be carers or cared for at some time in our lives, we all have selfish reasons for welcoming any such commitment. But as members of society too we must welcome it, since carers save all of us an estimated £132 billion a year—I am sure that your Lordships did not expect me to omit that statistic, because I quote it on every possible occasion—which would otherwise have to be found from taxation. Realising, as it now appears we must, that we shall all have to pay increased taxes to fund the NHS, we presume that this has to extend to social care and support for carers too.
The Carers UK survey showed that almost half the respondents were not sure whether they would be able to continue taking up and fulfilling their carers commitments if they did not get more support. That is a statistic to frighten us all. It is a time bomb, as I have said in previous exchanges in your Lordships’ House. No Government in all my 30 years of working on this issue have, I believe, had such an opportunity as this current one—as they produce their Green Paper on social care so eagerly awaited by us all—to make carers central to the social care strategy, as the Secretary of State has promised.
Sadly, we have learnt from the recent Statement that we will have to wait even longer for that Green Paper than previously anticipated. The action plan, welcome though it is, is insufficient on its own. The Government themselves have described it as merely a bridge to the social care Green Paper. As Sheila, a carer I was in touch with recently, said: “Is that all? What took them so long? There does not seem much meat in it to me. Am I missing something?”. The Minister must assure the House today that a more fundamental commitment and achievable, very specific objectives will the follow this action plan so that carers do not continue to miss out.
My Lords, I congratulate the noble Baroness, Lady Redfern, on securing this debate and on introducing it so ably. It is also a huge pleasure and privilege to follow the noble Baroness, Lady Pitkeathley, who has been such a tireless champion of carers for so many years.
I am pleased that the Government have finally published the long-awaited Carers Action Plan. It goes some way towards recognising the needs of carers and providing support for them in the wider health and social care system. This is, of course, welcome. Yet, for the 6.5 million unpaid carers working in this country, recognition is not enough. Today, I want to focus briefly on three key areas where I feel the Carers Action Plan falls short and where action would make a real and measurable difference to the long-term health and well-being of carers.
When starting any discussion of carers, it is vital that we remember that caring comes in many forms. Some find themselves becoming a carer later in life as loved ones fall ill; this is a very different experience from that of the thousands of young people who take up a caring role barely out of childhood or even early childhood in order to support a parent or a sibling. Carers of disabled children face different challenges again. This distinction is vital as different types of carers require different types of support. I am pleased that the Carers Action Plan drew some distinctions here, particularly between carers in work and carers in school—but, as the noble Baroness, Lady Pitkeathley, pointed out, less so in terms of older carers.
We can, and should, do better at recognising the plethora of challenges that all carers face today. Many carers share profound fears about what will happen when they are no longer able to fulfil their caring role. It is worth noting that, despite these widespread fears, only an estimated 25% of families have felt able to make concrete plans about who should take over their caring role in the eventuality of illness or death.
Short breaks and respite care are crucial to support the mental and physical health of unpaid carers, not least because they can use this time to attend doctors’ and hospital appointments for their own health, which is far too often neglected and often deteriorates due to the relentless nature of their caring responsibilities. Too often, carers I have spoken to have caring responsibilities that extend 24 hours a day, seven days a week. That is something we would simply not allow in any paid workforce. As a result of this experience, anxiety, depression and in some cases even suicidal thoughts occur.
During Carers Week a number of excellent events were organised. I attended one myself and spent time speaking to three women who were all caring for their husbands. They were doing an amazing job, and it was inspiring and humbling to talk to them. When I asked what would make a difference to them, they said somewhere to turn when they felt they could not cope. One of the ladies said that she had to tell her GP that she was having suicidal thoughts before she got any help, support and referral. Therefore, although there is a relatively brief reference in the plan to the need for respite and short-term care, the actual opportunities are still too often few and far between.
Respite care allows carers to recharge their batteries and deal with things that pile up in the course of caring. These can be basic things such as being able to pay household bills and deal with personal administration. Respite care is also vital for the carer and the loved one they are caring for to help relieve the pressure. Frankly, it gives individuals space to process the emotionally challenging situation in which they find themselves.
Although respite care is offered through some local authorities, the service is not consistent, and nor are there procedures in place to claim it. It is particularly hard for carers who live in rural locations, such as the lady I spoke about who had to say that she was having suicidal thoughts before she got any help. Distance and the isolation make getting help so much more difficult.
This highlights the need to truly implement the provisions and spirit of the Care Act 2014, too much of which exists on the statute book in name alone and does not really impact on the day-to-day lives of those who need it most. Can the Minister say what specific steps the Government are taking to ensure that unpaid carers, particularly those in rural areas, are given adequate support and information locally about their right to respite care? I mean more than simply spreading best practice, useful though that is.
Turning to employment issues, I am glad that the Carers Action Plan addresses the need to change working cultures and offer more flexible work conditions for carers. However, I was frankly disappointed to see that the Government had failed to address the question of statutory leave for carers. I was very pleased to introduce—three years ago, I think—a Private Member’s Bill on this subject. Although it did not get anywhere—it only had a First Reading—I still feel passionately about the need to address this issue.
In the UK today, many carers are forced to juggle their caring responsibilities alongside work. That leads to people having to make incredibly hard choices about whether to pursue their career and financially support their family or to care for a loved one. As we have heard, it is estimated that over 2.3 million adults have given up work to care at some point in their lives, and 3 million have reduced their working hours. Of course, the implications of this cut both ways. It damages businesses, which lose skilled staff, often at the peak of their careers, and it hurts the financial stability and security of carers and their families.
It is also worth noting that these caring responsibilities are not spread evenly across society. One in four women aged between 50 and 64 is an active carer, compared with one in six men of the same age. Therefore, the increased pressure that being a carer puts on an employee, often forcing them to take holiday simply to attend doctors’ appointments or to care for a relative after an operation, falls hardest on women later in their career, and it can lead to them experiencing poverty in later life. The introduction of statutory leave for carers, which I see as a logical extension of things that we now take for granted, such as maternity and paternity leave, would help to relieve this pressure and allow this group to take back a greater degree of control over their lives.
As demographics shift and our population ages, the role of carers will become ever more prominent. We will soon reach a point in this country where half the population is aged over 50. We have a responsibility to ensure that unpaid carers are able to pursue a career alongside their caring role. Looking forward, this type of provision will become ever more critical—not least as we are telling people that they need to make provision for their own pension and social care as they get older—in determining how this country deals with our demographic shift.
Putting in place statutory leave for carers will, I think, be closely aligned with changing workplace cultures. I know that quite a few businesses now have enlightened workplace policies and offer their employees carer-friendly policies, including paid care leave—and they see the business benefits of doing that as well as the benefits for the individual. We are falling behind globally in this area. Such an approach to statutory care leave has already been shown to have tangible economic benefits in countries such as Poland and Japan. Will the Minister outline in her concluding remarks the Government’s position on statutory care leave and explain why it was absent from the carers action plan? Will she agree to meet me so that we can discuss this issue further?
I was glad to see that the carers action plan focused on ways to increase support for young carers. The recent Barnardo’s report, Still Hidden, Still Ignored: Who Cares for Young Carers?, found that many young carers struggle to cope with the amount of pressure placed on them, emotionally and academically. Over 50% of young carers asked said that being a carer had impacted negatively on their emotional and mental health, making them feel anxious and worried. Not only is the role of a young carer hard but, as the noble Baroness, Lady Redfern, said, many young carers do not self-identify as a carer and therefore remain hidden. This makes it difficult for councils to fulfil their legal duty to identify young carers and carry out assessments that consider the impact on both the child and the whole family. The last census put the number of young carers in this country at 170,000, yet according to research done by the BBC and the University of Nottingham, the real figure may be four times that. I am pleased, therefore, that the Government have committed to undertake a review into the identification of young carers. Will this review include an assessment of how the Children and Families Act 2014 and the Care Act 2014 have impacted on the identification of young carers?
Finally, I will say a few words about funding. Adult social care is a vital council service that helps to transform people’s quality of life and supports carers of all ages with a range of different needs. It has been estimated that it will face a funding gap that will exceed £2 billion by 2020 unless an urgent solution is found. Indeed, a recent report from the King’s Fund estimated that £2.5 billion will be needed next year alone to keep adult social care afloat, ensure support for carers and ensure that those they care for do not get worse. The forthcoming social care Green Paper must deliver a sustainable solution that ensures the long-term future of social care and, ultimately, secures a future where carers and their families receive the right support, at the right time and in the most appropriate setting. It must also enable local authorities and the NHS to improve joined-up efforts to identify more carers and to offer them a proper carer assessment and plan, as well as the information, support and advice that they need.
I was very disappointed that Tuesday’s Statement on NHS long-term funding was silent on the issue of adult social care, save to push the equally long-awaited social care Green Paper further back into the autumn. The longer we wait for a long-term funding solution to adult social care, the more services such as those I have talked about, including respite care and short breaks, will be lost in the meantime. The number of people who can be supported in their own home and community will be reduced, with immediate knock-on effects on the NHS. It is not rocket science: it just requires some political will.
My Lords, I join your Lordships in thanking the noble Baroness, Lady Redfern, for making this debate possible today and for introducing it in the very helpful way that she did. The noble Baroness referred to the ageing population, in particular men, and to dementia. As someone who has experienced dementia in my family, I recognise what she said. I want to highlight that, when one has adequate resources, very often one can keep a parent who is suffering from dementia at home—that was our experience—where they can have a very high quality of life. We need to support those supporting people with dementia so that, wherever possible, they can be kept at home and have the highest quality of life. We must recognise that that is possible and pay tribute to the care workers who do such outstanding work in making that possible.
I welcome the Government’s action plan, particularly as someone who has been a live-in carer for an adult for three years. I also declare my interest as a vice-chair of the Local Government Association. I was especially interested in what the noble Baroness, Lady Pitkeathley, said about the importance of work. I know how important it was for me to be working during that period. I pay tribute to her for the 30 years or longer that she has been championing and doing very important work in this area. That leads me to ask the Minister a question. What is the policy in Parliament on supporting parliamentarians who are caring for family members or other vulnerable individuals? Are there support groups within Parliament which they can be pointed towards? Perhaps she would like to write to me on that. If we can provide the right support structure and policies in Parliament, it might help parliamentarians understand what is necessary more widely. But perhaps that is wrong.
As the live-in carer for a man with a severe and enduring mental illness who at times returns to a very early stage in life development, who was unable to clean himself or eat, who suffered from fears of persecution and was not prepared to take medication or engage with professionals, my reflections on the experience are that it certainly impacted on my mental health. As we have heard, 70% of carers experience this impairment. It also drove me to isolate myself; I would rather spend time on my own rather than reach out for time with friends. During the course of it I found that the more I asked for help for myself, the more I was able not only to deal with his care but to reach out to his friends to ask them to come in and to his wider family for support. I guess my reflection on that particular experience, for anyone who is reading this debate and in that position, is that you should ask for help, keep asking for help, reach out as far as possible for help, and there will be people there who will help.
I was very grateful that my GP registered him as an individual who had complex needs, both physical and mental. The GP highlighted to me that all the mental health services had been severely cut over recent years and that the day services which might have been available to him were not. What I found tremendously helpful was a support group I could attend regularly, where I could not only hear useful tips from others in a similar experience to mine—in the same boat as me—but get a sense that I was not alone in dealing with this.
I particularly welcome the attention that the action plan gives to young carers, to identifying them early and their support needs. My concern is that the resources might not be there to act on these action plans. Several noble Lords have already raised the issue of resources. A recent report from the Family Rights Group, the Care Crisis Review, has highlighted the situation for children and family services and child protection services. Local authorities, which deliver mostly statutory services, have experienced cuts of 30% to 40% in recent years, so non-statutory services—the early-help, preventive services—are the ones that have experienced very deep and severe cuts. As the All-Party Group on Children has taken evidence from directors of children’s services, social workers, academics and young people over the past two years, we have heard that it is the early help that is being removed. It is not surprising that the president of the Family Division, Sir James Munby, has starkly outlined the steadily increasing numbers of young people who are taken into care as well as concerns which will accelerate over time unless more is done to intervene earlier and help families. I am concerned that once the assessments have been made, there may not be the resources to deliver on them. Can the Minister take away for consideration by the Minister for Families and Children and her colleagues who are looking at the funding for local authorities the deficit that is expected by 2020 of £2 billion for services being offered to vulnerable children and families?
I turn to foster carers, who one might not think fit into this category, but surprisingly they do because many of them are unpaid. Unfortunately, some are long-term carers who will look after a child or sibling group for several years, but they have no right to take a holiday. One might say that it is unfair to separate foster carers from their children, but these can be very challenging young people. It is incredible to me that they do not have the right to respite from the care that they provide. While I do not expect the Minister to respond now, will she write to me about what the Government are doing to ensure that all foster carers with long-term placements have the right to a certain amount of paid holiday each year.
I thank the Government for the work that they have been doing over recent years to support foster carers and others, particularly the introduction of the “staying put” provision in the Children and Families Act 2014. When speaking to foster carers recently, they said how grateful they are for this. One man was fostering four or five children and he felt that two of them would need care beyond the age of 18. The “stay put” provision allows additional support to be provided until the age of 21 and he was very grateful that there would be money to help him meet the costs of caring for those children.
Church groups have proved to be extremely helpful in this area. It is not surprising that they should be, and they are playing an active part in finding new foster carers and adoptive parents, which is good to see. I should also pay tribute to the introduction by the Government of the adoption support fund. My noble and learned friend Lady Butler-Sloss chaired a Select Committee that looked into adoption which recommended a £5,000 annual support grant for adoptive parents and that was accepted. It is a helpful move on the part of the Government for those carers.
However, we can see that there is still a high turnover among foster carers and we need more of them to ensure that a range of appropriate and successful placements are available for young people in care. Again, I urge the Government to think about the terms and conditions for foster carers and to look at what needs to be done in order to demonstrate that they are being supported as they need to be in their very important work.
I repeat my thanks to the noble Baroness, Lady Redfern, for giving us the opportunity to debate these important issues and I look forward to the Minister’s response.
My Lords, it is always a pleasure to follow the contribution of the noble Earl and I congratulate my noble friend Lady Redfern on bringing this important debate to the Floor of the House. I welcome the action plan, but like others, I agree that it has been described as a bridge because that is what it is: a bridge. It is what happens when we have crossed over that bridge, and the scene which unfolds before us, that will be the test of whether some of the challenges faced by carers have been met universally and across the piece.
Something that strikes one about the services available to, and support for, carers is the fact that it is inevitably patchy. In certain parts of the country, with certain types of caring needs, real progress has been made. However, provision in other parts of the country either does not exist at all or sometimes, even worse, for one reason or another the most bureaucratic barriers seem to have been put up.
I am sure that other Members will sense my frustration; I am sure that they have all experienced this. You often wonder why people always feel that they have to reinvent the wheel. Why do they not go to where they can see that service being delivered and that support being given, and bring it forward so that not everybody has to feel that they are starting from zero? Surely there is a role for not only the statutory services but government and local authorities to cascade best practice down, right the way through the system.
I should have drawn attention to my interests in the register, but I want to focus on a narrow issue. Like other Members, I want to pay tribute to the support given by the noble Baroness, Lady Pitkeathley, to the important service of caring for people. I remember attending a carers’ meeting, which she oversaw, when I was first elected in another place. She asked me to do something. I said that I was happy to do so, and she said that it was because I was a carer. That was the first time that I recognised that I was a carer. For many people, something happens in their lives; they accept the responsibility and do their best, but they never quite realise that they are a carer. The way of life that you had changes for you and the person you care for. I guess that is life, but that support is essential.
Many years ago, probably in the 1990s after carers’ assessments were brought in, I used to receive an assessment regularly. In the end, I am afraid, I used to just write on it in very large letters and send it back in the envelope. If the needs of the person that I care for were met, my needs as a carer would be much reduced. I want to touch on that aspect of care being implemented and providing the service for the person you care for.
Action 1.15, on page 14 of the action plan, goes into quite a lot of detail, which I welcome. It talks about,
“legal rights for personal health budgets and integrated personal budgets”,
as well as the rights of people who are already in receipt of direct payments. I have been a great advocate and supporter of this issue; I still am. If the Government intend to expand rights, giving authority to the person in receipt of services so that they have more say and more choice and manage their funding, that is fine. I fully agree, but there is a real problem, which I can see expanding, not retracting.
Noble Lords may be surprised to know that in the last two or three months, I have had conversations in this House with three Peers, two of whom are carers. One is quite capable of self-advocating and provides the services that they need for their care, but in one case we are talking about somebody caring for somebody who cannot self-advocate and is certainly a vulnerable person. In all three cases, they have been unable to identify a service or person that can provide that care, to such an extent that they have almost felt like advertising on the internet—that is, putting up an open advertisement for somebody to come and provide an essential service. The local authority could not assist them in finding the right service or person and they had tried every avenue and could not do so.
With all due respect to Members of this House, most of us know our way round the system. If we, as carers, cannot find those services, what hope is there for people who are not so familiar with social services, the benefits system and dealing with agencies? It is a problem. As we expand direct payments and personal budgets, more people will find that they are on their own, trying to purchase the very services that are essential—even when there is funding behind it. That is a real worry. I say to my noble friend the Minister: I hope, as these various surveys encapsulated in the action plan and the action plan roll out and we cross the bridge, that the Government will look at the very real practicalities on the ground that carers face every day. Carers who cannot help the person they are caring for get the essential services that person needs will themselves start to feel the very real pressure and stress of the caring role.
Another area associated with self-funding and direct payments is on the quasi-legal side. For example, if you have to go out on the open market to purchase a service for somebody and you end up making a one-to-one contract with an individual rather than going through social services or through agencies that would have carried out certain legal functions, there are things such as Criminal Records Bureau checks. How does the individual carer approach that challenge? Do all carers know what is appropriate in applying for a lasting power of attorney and what it means when they are named on the lasting power of attorney? They need advice and it needs to be timely, but who will take responsibility for making sure that those people carrying out this function get that advice at the right time?
I say to the Minister: yes, please let us have direct payments and independent budgets, but that is not an excuse for psychologically saying, “You’re on your own now—get on with it; we’ve got other things to do”. As the Minister will know only too well, a word we bandy about in this House quite often in debates is “safeguarding”. It is as much a responsibility of a local authority to ensure that there is proper safeguarding for people managing their own affairs as it is for them to look at safeguarding people in residential homes. This is the detail of what happens on the ground. All too often when legislation comes in, this House and the other place never get to see how the detail is being implemented. We never get feedback until things start to go wrong and we start hearing that it is not working or that there are real problems. It is time, particularly for a House that prides itself on its scrutiny, to scrutinise the real detail of how this will work out.
On informal carers, the action plan talks a lot about volunteers. That is an excellent idea, but again, who are these volunteers? How will the carer know, when they invite a volunteer to look after a vulnerable loved one, just what their background is? The Minister must give attention to those sorts of details.
My Lords, I thank the noble Baroness, Lady Redfern, for bringing this important debate before us. I will speak about carers who take care of people with Parkinson’s. I declare an interest as I co-chair the APPG on Parkinson’s. What I will say about those who care for people with Parkinson’s will apply to carers who look after people with any progressive condition.
Support provided by carers is essential to the well-being of people with Parkinson’s. There are challenges for carers of people with Parkinson’s. They tend to be female, older and co-resident, with a long history of caring. The challenges of caring for someone with a progressive condition are profound. I know this because my father had Parkinson’s and my mother looked after him for about 20 years. She would never have called herself a carer in those days. The term just was not used. She looked after him because she was his wife and she took great care of him. I am so glad that things have improved from those times.
One of the main reasons why people with Parkinson’s are admitted to care homes for definite and indefinite periods is carer breakdown. Evidence from Parkinson’s UK has shown that people with Parkinson’s, their families and carers are not aware of the support available and often access it only at crisis points. The carers’ strain report, published in January, found that almost 70% of people who care for someone with Parkinson’s were in need of some form of respite care, while 30% were at risk of “burning out”. The report also found that age, the stage of a person’s condition, their mental health scores, swallowing problems, daytime sleepiness and delusions were all significantly associated with greater demands on carers.
Effective and timely treatment for people with Parkinson’s, including addressing mental health needs, can go a long way towards reducing strain on carers. The issue of supporting carers is therefore complex and relates to a wide number of areas. Information about rights to assessment as a carer, and to reassessment when circumstances change, is particularly important. Information also needs to be targeted at seldom-heard groups, including carers in rural areas and those from ethnic minority communities. People need to be supported to access this information.
The Caring about Parkinson’s survey in July 2016 looked at how social care is working for people with Parkinson’s and their carers. It revealed that,
“76% of carers who answered the question ‘have you ever been offered an assessment of your own needs?’ had never received an assessment … 74% of respondents with Parkinson’s and 59% of carers were unaware of their local authority’s social care information service and many people with Parkinson’s and carers did not know how to request a social care assessment”.
No carer in the survey reported receiving access to preventative support, despite Care Act guidance which emphasises the value of such support for carers.
The Putting People with Parkinson’s in Control study, published in February 2016, also found a consistent message that people with Parkinson’s did not know what social care was available to them or how to access it. Getting access to social care at the right time can help reduce the number of crisis events, such as a hospital admission, or avoid them altogether. It can even slow down the need for residential or high-cost care and reduces responsibility on the carer. The Carers Action Plan also describes a desire to improve support for carers’ mental health. This area is often neglected, but will impact on the quality of care provided.
The All-Party Parliamentary Group on Parkinson’s conducted an inquiry, which I chaired, on improving mental health services for people with Parkinson’s. The report was published in May. It is a totally neglected area; this type of report has never been undertaken before. We found that addressing the mental health needs of people with Parkinson’s can reduce the strain on carers. At the same time, supporting better mental health for carers will impact positively on the care and support they can provide for people with Parkinson’s.
The APPG report also lists many factors which prevent mental health needs being addressed effectively. These include delays in assessments, a shortage of specialist mental health professionals, poor communication between services and an artificial divide between physical and mental health services. This divide is a big problem; if only it could be matched up, we would really improve services to people.
The Carers Action Plan notes:
“The Department for Work and Pensions will ensure that benefits for carers (including Carer’s Allowance and Universal Credit) meet the needs of carers and support employment for those carers who are able to work”.
This lacks detail, and there is no specified deadline for when this work will take place. Will the Minister be consulting stakeholders about any amendments to benefits to ensure that they meet specific needs?
Reform of carer’s allowance is a priority, as carers need a fair income and support if they wish to work or remain in work. A solution would be to raise the earnings limit for carer’s allowance, as the limit prevents many carers returning to work. Another would be to address the overlapping benefit rule that prevents those in receipt of a pension receiving the allowance. There should also be better information and advice about the benefits available.
The Carers Action Plan recognises the importance of working with charities and third sector organisations to create more “carer friendly communities”. Parkinson’s UK has an extensive support network. It has more than 440 local groups across the UK that support people with Parkinson’s, their families and carers. These groups are run by volunteers who often have experience of Parkinson’s. Local groups fundraise to support activities and provide such things as exercise, singing classes and respite for carers. It is a valuable resource and I know many charities carry out similar work.
There is a need for better data gathering to improve services. Parkinson’s UK has sometimes found this a barrier when conducting its own research. For example, when undertaking the Caring about Parkinson’s research, 63% of local authorities that responded to Freedom of Information requests were unable to provide any of the requested information. In most cases, this was because the local authority did not collect data by condition. If we have not got the data, we do not know what the problems are, so those problems cannot be solved.
Key improvements are needed: I suggest the following. We should ensure that social care is easy to access and information about it is prominently available on council websites. We should regularly offer people with Parkinson’s, and their carers, assessments of their needs. We should improve mental health services for people with Parkinson’s, and their carers, with attention to the condition-specific needs of Parkinson’s disease. We should reform carer’s allowance and improve the gathering of condition-specific data. Will the Minister look at these key improvements and read the report from the APPG, which is about people with Parkinson’s who experience anxiety and depression? If she looks at the recommendations, I am sure she will agree that there is much that should and can be done, and I look forward to her response.
My Lords, I, too, congratulate the noble Baroness, Lady Redfern, on securing this important debate. I will focus on two particular areas of the carers action plan. The first is carers of young people and children. I shall refer to them as parent carers, but it also covers other family members, foster parents and guardians. I also want to focus on young carers, given the complex lives they lead. While the carers action plan represents some progress for carer identification and visibility and carer skills, I have yet to be convinced that it addresses the everyday needs of carers across the country, especially those caring for young people and children. They face very different circumstances from those caring for the elderly, who are the vast majority of carers in this country.
The Care Act 2014 set out a clear pathway for implementing a cap on the cost of care. The lack of key skills, time or funds should not prevent anyone from accessing the care they need, above and beyond the time committed to them by their families. Half of working age carers live in a household where no one is in paid work, and nearly 30% have seen a drop of £20,000 or more in their household income as a result of caring. Frequently, they also have substantially increased heating and transport costs, and special equipment costs—carers and their families face significantly higher costs of living across the board than the rest of the population. We cannot allow the realities of the costs of caring to become a barrier to receiving care.
These families, particularly those caring for children and young people, have other support needs. But things such as short breaks are increasingly being cut by cash-strapped local authorities. The Carers Action Plan says:
“The Department of Health and Social Care will fund a project on actions to promote best practice for local authorities, clinical commissioning groups, and other service providers and commissioners on carer breaks and respite care. This will include promotion of the existing option for carers and individuals to use personal budgets or direct payments to help pay for alternative care arrangements while carers take a break”.
Will Ministers make sure that short breaks and respite care for disabled children are specifically included within the scope of this project? Will the Minister review the funding of short-break provision for disabled children and their families?
The action plan also says:
“The Department of Health and Social Care will fund a project to support parent carers to navigate the transition from child to adult services as their child approaches the age of 18”.
Will the Minister make sure that this project includes young people with life-limiting and life-threatening conditions within its scope? These young people often have to cope with a cliff edge in their care as they transition to adulthood—just at the point at which their health is deteriorating. Children’s hospices provide crucial support for parents and carers, allowing them to take time for respite and preventing burnout, yet children’s hospices receive, on average, 22% of their funding from statutory sources, compared with an average of 33% for adult hospices. Can the Minister commit to addressing this funding gap by increasing the children’s hospice grant to £25 million per year? Can she commit to producing a funded children’s palliative care strategy that takes a family-centred and holistic approach to health, social care and educational interventions, many of which are suffering at the moment because there is not enough co-ordination between the different agencies involved?
The Disabled Children’s Partnership, a coalition of 60 organisations campaigning for improved health and social care for children and their families, has identified the lack of collaboration between services as a major challenge for disabled children and their families. Will the Minister help to improve health and social care services for disabled children by providing an early intervention and family resilience fund? Will she commission a review of health and social care law to strengthen and clarify rights and entitlements for disabled children and their families?
The action plan highlights a programme in the works to train local communities to identify young carers, and this is welcome. It seeks to provide the public at large with the skills to correctly engage with young people and make sure that they are signposted to the services they need. According to estimates, there could now be more than 700,000 young carers in the UK. It is clear that schools become the primary stress point for these children. Some 27% of secondary school-age carers experience educational difficulties or miss school. More than 40% of young people caring for sufferers of addiction suffer educational difficulties. According to Family Action’s 2012 report on young carers, most schools do not know about their pupils who are carers. Being a young carer can be a hidden cause of poor attendance, underachievement and bullying, with many young carers dropping out of school and achieving no qualifications. A 2012 survey for the Princess Royal Trust for Carers found that 68% of young carers experience bullying at school—that is shocking—and 39% said that nobody at school was aware of their caring role.
Schools must identify and support young carers. Teachers should be empowered to recognise the signs and reach out, and we must ensure that they have the knowledge to point students and parents in the right direction. As a primary point of social contact, the role of schools is especially promising for carers in the BAME communities. Critically, the action plan rightly points out in paragraph 3.4 the need to reach out to these communities, and schools have a clear role in doing so for young carers.
Many more even younger pupils are likely to have caring roles that go unnoticed. Nikki cared for her severely disabled son for more than 10 years until his death last summer. In her moving blog online, she recounts how she had to give up her career and tells of her social isolation while looking after her son with his debilitating illness. It was only after Lennon died that she realised the profound role her two young daughters had played in his care. She wrote:
“I had never thought of my daughters ... as being young carers and I had never identified them to … our local charity supporting carers … although their school did know about Lennon and that their home life was not ‘normal’ ... I thought you could only be a young carer if you were a child caring for their parent ... At a time when they should be out having fun with their friends, doing homework, and worrying about what clothes they should wear, young carers are busy helping out with cooking, cleaning and laundry, and providing both emotional support and physical care”.
A young man aged 10 said to his respite foster carer when his mother was in a hospice with a terminal condition, “At least I can sleep at night because I know someone is watching if mum’s still breathing”. Nikki’s story is clear indication of how societal awareness and carer identification are and must be key aspects of any further action. It also shows that our aid and support for parent carers and carers returning to the workforce are severely lacking.
The action plan has one glaring omission. There is virtually no reference to any detailed projects for parent carers of disabled and severely ill young people and children. We must acknowledge the monetary, medical and emotional challenges faced by parent carers of disabled and ill children. In the case of bereavement in paragraph 1.2, we must provide support for the singularly devastating effects on parents and siblings. The special identification methods and support afforded to people with dementia and their carers should be expanded to parent carers, too.
After the death of her son, Nikki wrote:
“I applied for jobseeker’s allowance, wanting to buy myself a little extra time to grieve before returning to some form of work. Only to be told that because I hadn’t ‘worked’ in 10 years I was ineligible. Despite the fact that in those 10 years, I had worked harder and for many more hours than the average person. The fact that I had saved the government and the NHS hundreds of thousands of pounds by providing my son with hourly complex medical care counts for nothing ... You are told to man up—move on. Get a job. Pay the bills. Provide for your remaining family. Leaving the last 10 years a memory”.
It is clear that the benefit and support structure is lacking, especially for parent carers. The plan includes the assurance:
“The Department for Work and Pensions will ensure that benefits for carers (including Carer’s Allowance and Universal Credit) meet the needs of carers and support employment for those carers who are able to work”.
If we are to fulfil this commitment we must raise the amount people can earn before losing carer’s allowance and reduce the number of hours of care per week required to qualify. Just because parent carers tend to be in critical salary-earning and labour-providing years, we cannot justify the current policy that effectively penalises them for caring for their children instead of working.
Parent carers must be afforded more support in returning to the workforce. Unlike those caring for elderly relatives, many parent carers also have school-age children. Along with giving employers the framework to assess their support for carers and returning carers in paragraph 2.1, we should give employers the pathway to improving their support. As a matter of workers’ rights, as in paragraph 2.3 of the report, we must mitigate the detrimental and limiting effects that providing care, by no choice of their own, has on carers’ careers. Beyond objectives and research, we must identify and ask the Government what funding, training and direct engagement between returning carers and employers they plan to implement to prevent the lasting impact of carers’ economic absence.
I will end with the voice of carers for these children, both siblings and parents. It is easy to focus on the action plan, with its clinical issues and items, but the stresses and strains on families of living in the intense world of the lives of young adults and children with severe illness and disability, often for 24 hours a day, is immense. I am grateful to Amy, who is 11, and Ekraj, who is 10, who are young carers alongside their single-parent mum Satnam, caring for Gurpreet, who today is back in Great Ormond Street for her 17th operation. Their short-break care at Nascot Lawn is being closed. It is a lifeline not just to Satnam but to these young girls, too. The girls want to say to your Lordships:
“I get to spend very little time with my Mum as she spends most of her time looking after Gurpreet. I used to get time to spend with her when Gurpreet was at Nascot Lawn and I was able to have my friends over to play but as Gurpreet doesn’t go anymore I don’t go out or have my friends come over. I help my mum look after Gurpreet. As mum spends more time now with Gurpreet’s care, I help do things around the house like the laundry, hoovering, mopping and other chores just so my mum can get time to spend with me. When we go out we have to make sure we’ve taken all Gurpreet’s feeds & medicines and we can only go to places which are wheelchair accessible. It’s so sad to see my friends and other children getting to go places where we all can’t go because Gurpreet can’t access them because of her wheelchair and so many times we have to go back home because we can’t go together. My friends don’t always understand why Gurpreet can’t talk or walk and why she makes funny noises. Sometimes she scares my friends. We are both part of the Young Carers Council in Hertfordshire and Young Carer outings are the only time we get to go out without Gurpreet and able to meet other young carers. For the first time last year we went to the Young Carers Residential and had so much fun doing activities that we could never do”,
at home. They go on:
“Many times we have to go stay with our Nan when Gurpreet goes to Great Ormond Street Hospital. She is there now and has just had surgery … Our Nan takes us to school and looks after us. We worry about Gurpreet and miss our Mum when she is at the hospital … We love Gurpreet very much and love spending time with her but we also want time to do things children our age do like going to the park or going cycling”.
Satnam is immensely proud of her very special and complex girl and of her other two children and their amazing support. They are the joy of her life. The question is whether the carers action plan will truly support this amazing family and the thousands of others around the country. Or will that support continue to be reduced as it is at the moment, putting an impossible burden on them? That is the real yardstick for this plan and, I am afraid, for this Government to be judged by.
My Lords, I congratulate the noble Baroness, Lady Redfern, on securing this debate, which really is timely. There has been a great deal of wisdom, expertise and understanding from contributors. I am pleased to see the noble Baroness, Lady Pitkeathley, at the Dispatch Box on this issue; she is widely acknowledged as the House’s expert on carers.
I welcome the action plan. It is an important start, but it poses as many questions as it answers. If the Minister is unable to respond to all my questions today, I will be quite happy if she writes to me and puts a copy in the Library. As someone who was involved in the Care Act from pre-legislative scrutiny to enactment, I am delighted that people are now sitting up and taking note of issues that affect carers, as without them both the NHS and the care sector would collapse under the strain. We owe them all a huge debt, yet for the large part we do not know who they are until it is getting too late to help.
I ask the Minister: who owns the plan? Six Ministers of State signed it, from nearly all the right departments—Health and Social Care, equalities, DCMS, BEIS, DWP and DfE—but not Housing, Communities and Local Government. Local authorities have responsibility in their areas to deliver the Care Act and the Children and Families Act but were not on the list. Why is that? Can we assume that these Ministers have brought their networks and stakeholders with them? Would they have been consulted as a matter of course? For example, in signing up to this, did BEIS agree to get the buy-in of organisations such as the Institute of Directors or the FSB? What I really mean by ownership is that, after one, two or five years, who will make the assessment of progress on the plan and report back to which Secretary of State and applaud success and follow up on inaction? Who will co-ordinate best practice? The noble Baroness, Lady Browning, asked whether we in your Lordships’ House will have the opportunity to quiz a Minister or ask questions about progress based on an annual report, and I sincerely hope we will. Best practice is arrived at by research. Could the Minister confirm which of the sponsoring Ministers will be responsible for that?
I understand that £500,000 is to be made available and that the fund is launched. When I first became interested in policy and politics, a friend told me that for Cornwall, where I live, a good rule of thumb is to divide the total figure to be allocated to an initiative by 100 and that is what will come to Cornwall in support of it. In this case, that gives Cornwall £5,000. I spoke to the carers’ service lead and asked him to confirm what he might be able to deliver for £5,000 in Cornwall where there are at least 64,000 known carers. As all noble Lords have said, there are far more carers unknown to the service than there are who are known. He said he thought it might provide between 50 and 100 days out for both carer and cared-for. That is good news, but £5,000 among 64,000 carers in the county of Cornwall will not go very far, and that will be factored out right across the country.
The LGA has said the Carers Action Plan should be considered an opportunity to address the needs and well-being of unknown carers. I endorse the call by the noble Baroness, Lady Redfern, for a named social worker for a carer. When my mother was ill, I would have welcomed one for her. Continuity is really important. If you make a call and just get the duty social worker, you have to go through everything over and over again.
As we walk down our high streets, we pass many carers daily, aged from seven to 87, or even older. Where the individual is known to local services, the carer should be identified and offered support and advice. However, many carers go unidentified. Who is responsible for identifying those who pass under the radar? Are locally funded and voluntary carers’ networks to be responsible for their identification? Are GPs and paramedics trained to identify carers, or do we have to rely on self-identification?
What of children? The noble Baroness, Lady Brinton, said no one at school knew of their role, and this really chimed with me. I would like to tell noble Lords about a young man of 14—let us call him Jon. I was an inexperienced teacher and he was in my tutor group. He came up to me quietly and asked, “How do you bake a cake, Miss?” I asked what sort of cake. A birthday cake, he told me. He wanted to bake one for his younger brother. Without thinking, I asked, “Couldn’t your mother do it?” This was 1976; I do not think I would ask that now. “Nah,” he replied, “she left us ages ago”. I knew his dad was a shift worker, and it transpired that Jon was the “mum”. They had no help but did not want anyone to know in case the family was split up. I told him how to make his cake and spoke to the housemaster. He agreed that I had done the right thing in telling him and said he would chat to Jon. Nothing further happened and, to my shame, I did not follow up. I hope that Jon would now be recognised formally as a young carer and appropriately supported, and I would like the Minister to reassure me that today a teacher would know how to deal with that scenario and that someone in a senior pastoral role in a school would not quietly ignore the situation.
Older people care for their partners out of love and duty, but without support as many do not know that it is available. Likewise, older people care for their prematurely ageing children with learning disabilities. Here, I declare an interest as chair of a charity providing care to around 2,500 adults, and we see lots of exhausted elderly carers. Informal caring can be a 24/7 way of life. It is often the support provided by a carer that decides whether an older person can continue to live in their family home or has to relocate into residential care. Much more needs to be done to fully recognise the value and contribution that carers make to individuals and society as a whole.
The forthcoming social care Green Paper, now due in the autumn, must see the contribution made by carers as a central component to building a responsive and sustainable social care system. It must be bold and radical in its approach, and recognise the support that volunteers can provide, as well as paid staff. Any half-hearted attempt will only fail those providing such important care. Along with the NHS 10-year plan and budget, it must address the issue of underfunding for local government as well as for the NHS. Carers’ health is a public health issue, and the Government should rectify the omission in the PM’s speech earlier this week of extra funding for public health. Carers’ fitness is important.
Those in middle age care for children and older parents while trying to hold down a job. Their identification is less easy as they will often not wish to admit to anyone any factor that might affect their work. I welcome the employer benchmarking scheme, available next month. Who is piloting it and then, once fine-tuned, how is it to be rolled out? How will employers know about it and will it be promoted nationally? The scheme Employers for Carers is to offer umbrella membership to local councils, which is welcome, but only to 10. Are they yet identified? Who is to ensure that there is a diversity of councils—metropolitan, urban and rural? The resulting evidence base will prove invaluable in developing assistance for working carers.
I feel reassured that the state sector—the NHS, education and government bodies national and local—will put plans in place. Many are already there. Many large multinationals and corporates have done the same. The report mentions Aviva, but I also commend BT. It is easier for an employer of thousands to be flexible. It is less so if you employ hundreds. For smaller organisations, it will pose a challenge, and I hope that the Timewise carers’ hub and the Taylor review of flexible working will point the way. Earlier, I mentioned the IoD and the FSB. Have there been conversations with these important membership bodies?
It is remiss of me to have spoken for so long without mentioning the voluntary sector, which is so pivotal in the delivery of this plan and everything to do with carers. It works in partnership with local government and the NHS locally. Many in the voluntary sector are charities, but we should also include such things as informal lunch clubs and faith groupings.
I have left many issues unaddressed. Paid carer’s leave and carers for those with dementia are perhaps two of the most significant. One thing about your Lordships’ House is the certainty that we will watch developments with keen interest and keep the pressure on all departments of state involved in the carers plan and on the Ministers in this House.
My Lords, I too congratulate the noble Baroness, Lady Redfern, on securing this debate, just a week after national Carers Week and at an opportune time to look in detail at the Government’s action plan and what their pledge to make carers central to the forthcoming social care Green Paper must contain if it is really to be put into practice. The debate has heard contributions from noble Lords who have a strong commitment to speaking up for carers. I am particularly pleased to welcome my noble friend to her first guest Front-Bench outing. The APPG on Carers, which she co-chairs, plays a vital role in ensuring that carers’ voices are heard loud and clear in both Houses, and we know that she always leads the charge in this House on carers’ rights and concerns, always telling it as it is about the everyday stories of carers and the day-to-day realities they face.
It is good that today we have spoken about carers themselves—not just about the key social, policy and financial issues that need to be addressed and the wake-up call that the Carers Week survey provides but about the actual people doing the caring, the loved ones they are caring for and the daily struggle they have to cope. Carers UK and the organisers of national Carers Week are to be congratulated on placing carers’ own health and well-being as the focus of the week, as we know that all too many carers put their own health second to that of the person they care for, particularly when they are round-the-clock carers.
As we have heard, almost half of those responding to the Carers Week survey said that they would expect to be able to provide less or no care in future because of their own poor current or future health, with a third saying the same because of poor mental health, particularly when they are struggling financially to make ends meet. My noble friend was right when she described this as a time bomb which must be addressed in the Green Paper—for which we now learn of yet another delay until the autumn. I look forward to hearing the Minister’s response on that. Can the Minister also confirm that when the Government say that carers will be central to the Green Paper, that will mean ensuring that carer support services and essentials such as paid respite and carer breaks, basic personal care for people being cared for at home and supported carer networks are there to meet the needs of carers, and are properly funded and available?
The action plan is of course to be welcomed, despite the two-year gap since the previous strategy ran out. Its five initiatives—making services and systems work for carers, supporting the Care Act and Children and Families Act provisions for carers; employment and financial well-being; supporting young carers; carer support in the wider community and society; and improving outcomes for carers—represent some “positive short-term measures” and “practical measures”, as Carers UK has said, and “a good next step” and “some progress”, as ADASS has commented.
We welcome a focus on young carers and the recognition of the need for support for Armed Forces carers. We fully recognise the importance to progress of the cross-departmental approach, which builds on the work set out in the original 2008 strategy and helps to join up contributions from across government. The noble Baroness, Lady Jolly, made a valid point about the absence of the communities and local government department from the list, and I look forward to the Minister’s response.
The key issue, as many noble Lords have stressed, is the urgent need for vital financial support for carers ahead of the Green Paper. As the MS Society has underlined, carers are keeping the social care system afloat, and they deserve better. Data published by the Labour Party last week showed the reality of eight years of swingeing social care cuts to council budgets. Almost two-thirds of councils have been forced to charge for carer breaks, and carer support services have taken a big hit, along with other services that are the key to enabling people to live in the community and for carers to continue caring for them.
Last week’s IFS report showed that spending on care provision for elderly people and adults with disabilities will be 3% less than in 2009-10 and, taking into account the growth in population since, 9% less per head in real terms. Carers UK’s 2017 State of Caring report showed that a quarter of carers had not taken a break in five years and that two-thirds of councils now charge for respite care. Thousands of carers just have not got the money to pay for time away or to have their loved one cared for, even so that they can just stay at home and rest.
This is the context in which the action plan must be delivered and judged, as noble Lords have underlined today. Age UK’s stark estimate of 1.2 million people living with unmet care needs and of more than 3 million hours of home care being lost since 2015 due to council cuts show the scale of the problem. As its recent Behind the Headlines report stated, getting access to decent quality, reliable home care and maintaining it is a daily battle facing carers, families and the people they care for. What plans do the Government have to address these unmet care needs? Will the Green Paper deal with this matter?
As a carer myself, I meet many local carers, and the life-changing impact on the family finances when the main income earner becomes disabled and cannot work and the other partner has to stop work to care for him or her is devastating. One local family with two children lost more than half its income when the husband’s rheumatoid arthritis resulted in him losing his job and having chronic painful and swelling joints and joint replacements. He was awarded PIP but then lost it on reassessment and, because of this, his wife could no longer claim carer’s allowance. They are both depressed and worried and his wife is permanently anxious about how the family is going to cope and pay its debts.
At just £64.60 a week, carer’s allowance is the lowest benefit of its kind. Carers UK has called for it to be raised significantly in the longer term and in the short term for it to be raised at least to the level of jobseeker’s allowance. Does the Minister acknowledge the need for this substantial increase, and can she confirm that the social care Green Paper will address this specific need?
We have received many excellent briefings as background to this debate, and a number of noble Lords have referred to them. At the heart of them all is the urgent message to the Government for a sustainable funding settlement for social care, sadly not addressed in this week’s NHS funding announcement. The Alzheimer’s Society highlights the 700,000 carers taking care of people with dementia who save the UK economy £11.6 billion a year, and the need for urgent action on identifying and supporting them. What are the Government doing to address the issue of finding hidden or unknown carers who do not come forward for help?
The Rainbow Trust Children’s Charity, supporting children with terminal and life-threatening illness, emphasised the huge problems obtaining statutory funding to support parent carers and families facing these terrible situations. Can the Minister explain how the Government will specifically support parent carers in future? Sense, the charity that supports people with sensory impairments, learning disabilities and complex communication needs, underlined the profound fear highlighted by the noble Baroness, Lady Tyler, that carers have about what will happen to their relatives in future, when they are no longer able to provide support. Some 75% of family carers have not made a plan for this, and only one-quarter of councils routinely help families to do this. What action can the Government take to ensure that care plans and assessments deal with this difficult but vital issue?
Finally, the use of carer-friendly GP surgeries has been raised and is in the action plan as one of its key provisions. The development of a quality standard to bring more surgeries up to the level required is welcome. There is much current good practice to learn from, but the Carers Week survey showed that many GPs are not even asking carers the basic questions about their health—about talking therapies to support mental health, flu jabs, respite care or carer breaks. They still see the carer only as the person bringing in the patient. As that shows, more than the short-term awareness-raising measures outlined in the action plan is urgently needed, if the alarming numbers of carers who say that they will need to give up caring in the future because of poor mental or physical health are to be helped and supported to carry on caring. Does the Minister agree?
I have referred to the briefings received for this debate. I end my speech by quoting from a carer highlighted by the MS Society. Paul, a 72 year-old carer, says:
“My wife has MS, is quadriplegic and I am her full-time carer. When I am ill Lesley has to stay in bed until I am able to help her. It would be lovely to have care workers to help at home”.
That is just one of the 1.2 million people who need support but are not getting it, and that is what the Green Paper has to address.
My Lords, I congratulate my noble friend Lady Redfern on securing this important debate and thank all noble Lords for their powerful contributions. It has been a very thought-provoking and considered debate. However, I note that of the 10 speakers in our debate the noble Earl, Lord Listowel, was the only the noble Lord speaking. I am personally grateful for his insight as a carer in this debate.
As my noble friend Lady Redfern, the noble Baroness, Lady Pitkeathley, and the noble Earl, Lord Listowel, have all so elegantly expressed, caring for a relative, friend or neighbour is something that many people do. In fact, around one in 10 adults in the UK is currently providing significant unpaid care, many of whom are women, as the noble Baroness, Lady Brinton, said. Carers do an amazing job. I pay particular tribute to the noble Baroness, Lady Pitkeathley, for her work over the last 30 years in supporting carers, caring for them and raising issues that they have faced. Thank you.
To the people whom they care for, carers are the indispensable family member, friend or neighbour who makes each day possible. I know, because I too am a carer. To health professionals, they are the experts-by-experience, who turn treatment plans into reality. Being a carer can be rewarding but, as we have heard from across the House, it can also have substantial negative impacts. We need to support and recognise carers and help them to provide care in a way that allows them to invest in their own health and well-being, employment and other life goals, as the noble Baroness, Lady Wheeler, highlighted. We fail to do so at our peril.
Our population is ageing, and growing at an unprecedented rate. One estimate suggests that the number of disabled older adults receiving informal care in England will increase from around 2.2 million in 2015 to around 3.5 million by 2035. In the UK, this care is worth billions of pounds to the economy each year, as the noble Baroness, Lady Pitkeathley, reminded us.
The cross-government Carers Action Plan is an essential step towards realising our commitment to carers, and I am grateful to all noble Lords for recognising that. As noble Lords have said, it makes a bridge. It sets out a two-year programme of targeted work to support unpaid carers, focusing actions around five themes. First, it focuses on the importance of carers being recognised and supported by public services, which is essential. I know how important that is. My noble friend Lady Redfern as well as the noble Baroness, Lady Tyler, my noble friend Lady Browning and the noble Baroness, Lady Gale, among others, alluded to this. Carers often have extensive contact with the health and care system, and we are seeking to improve awareness and understanding among health professionals and social workers so that they can help to identify carers and be proactive in helping them and providing them with support and information.
The Care Act introduced important new rights for carers, giving them a legal entitlement to assessment of, and support for, their needs. But I have heard that these are not being consistently applied. That experience has been identified by my noble friend Lady Browning, as well as the noble Baronesses, Lady Pitkeathley, Lady Tyler and Lady Gale. The noble Baroness, Lady Gale, also stressed the importance of data collection—because, if we do not have proper data collection, we do not know who the carers are and how we can care for them—particularly in relation to Parkinson’s. Of course, I shall look very carefully at the recommendations in the APPG report that she mentioned to see what we can take forward and learn from. Because of the variation, we have committed to working with local government on a sector-led improvement programme to focus on the implementation of these duties.
A number of noble Lords alluded to mental health and respite care, and it is a key concern. The noble Baronesses, Lady Brinton and Lady Tyler, highlighted the importance of what more needs to be done in this key area. We know that carers often report feeling tired and less resilient, both physically and mentally. A recent report by Carers UK, which noble Lords have cited, found that one-third of carers felt that poor mental health would mean they will be able to provide less or no care in future. Young carers need to be supported particularly to take a break, refresh and re-energise, as much as older carers—and we must not forget that. The noble Baroness, Lady Brinton, highlighted the importance of this. That is why, since 2015-16, we have allocated £130 million funding per year through the better care fund to support carers’ breaks. I take on board the issues around disability and the funding that may be needed, and I shall, of course, feed back concerns that the noble Baroness, Lady Brinton, raised, to the department.
Through the Carers Action Plan, we have committed to funding a project to promote best practice. I know that the noble Baroness, Lady Tyler, said that, when looking at rural areas, she did not want Ministers to say, “We’re just going to disseminate best practice”. I will come on to her quite specific question, but we are looking at what is best practice, what works and how we can disseminate that much better than I think we are currently doing. This is so that we can ensure that carers receive the support to which they are entitled and need. A number of noble Lords mentioned the funding gap and palliative and respite care. I agree that we need to address this issue and recognise the challenges that are being faced. That applies also to Parkinson’s, dementia and drug addiction, which were mentioned.
The action plan considers employment and financial well-being, which I know the noble Baroness, Lady Tyler, in particular, highlighted. Many carers juggle work commitments with their caring responsibilities, but it is rarely easy or straightforward. The cost of caring can be life changing. Those caring for more than 20 hours per week, as the noble Baroness, Lady Pitkeathley, highlighted, have average incomes around 10% lower than non-carers. In some cases, professional careers can be delayed, curtailed or never even start. The action plan sets out our commitment to raising the profile of carers with employers to encourage them to be more flexible in their employment practices. The Department for Business, Energy and Industrial Strategy has established a flexible working task force to improve the recruitment, retention and progression of carers and other groups. We are also considering the question of dedicated employment rights for carers. I think it was the noble Baroness, Lady Tyler, who asked about statutory pay and, as we look into these issues even further, we will take that into consideration.
As my noble friend Lady Redfern stated, the Carers Action Plan will also consider how we can better support young carers. This was raised across the House, particularly by the noble Baroness, Lady Brinton, and the noble Earl, Lord Listowel. As they will be aware, in 2015, we changed the law relating to young carers and now they are all entitled to an assessment of their needs for support, the same as for the person for whom they care. Noble Lords are quite right to say that it is one thing having something in place and entirely another ensuring that carers know about what is available. I was not even aware of this provision and, as I have stated, I am a carer. We need to make sure that the message gets out into the community much more than it does currently.
As I have said, while some caring can be rewarding for young carers, research shows that they can experience poorer mental and physical health and miss out on opportunities in education and employment as a result of their caring responsibilities. The actions in the plan focus on improving the identification of young carers and providing them with better support to access services. There will be a review to look at best practice in this area. I was really quite moved by what my noble friend Lady Redfern said, because I entirely agree with her that young carers are the hidden army.
The plan also considers how carers can be supported by the wider community but, before I move on to that, there were some specific questions raised by the noble Baroness, Lady Brinton, and the noble Earl, Lord Listowel, regarding foster carers, which is an important issue. There are many extraordinary families fostering children; they selflessly devote their lives, relationships, resources, experiences and homes in order to provide love, care, support and stability to the country’s most vulnerable and traumatised children, often for many years. In February, the report of an independent review led by Sir Martin Narey and Mark Owers was published. This makes recommendations about what can be done to make foster care more effective and the Department for Education is considering how to take these recommendations forward.
I want to tackle the issue of carers often feeling isolated or ignored. As I have already said, carers are crucial to the wider community and the economy and we recognise that we need to better support their role. Carers rightly describe the practical frustrations they face—such as difficulties in trying to access services at times that do not fit within regular working patterns—which make their caring roles more challenging than they need to be. We need to address this and it should be easy to do. To that end, we will be launching a £500,000 carers innovation fund to find creative models of support, such as the use of technology to assist caring responsibilities. I know how frustrating it was for a member of my family who needed carer responsibility for an older member of the family. They needed to have technology in case that older member of the family fell out of bed, or so that they could just take a few hours when they knew that they were safe and go to the shops without fear. That simple technology, when it was brought to their notice, helped them, because they knew that there was a helpline to call. We know that carers can feel very isolated and lonely, and this needs to change. We will ensure that, across government, through the loneliness strategy, the needs of carers are carefully considered.
We know that there are gaps in our knowledge about the experience of carers across the country. The action plan sets out the ways in which we will work to develop the evidence base by funding more research into the drivers influencing carers. This will ensure that future policies can do full justice to the role that carers play.
While the action plan sets out the practical actions that we intend to take over the next two years, we recognise that there is still more to do. That is why the needs of carers will be central to the forthcoming Green Paper. Although I am, like other noble Lords, disappointed that it will not be available sooner, I understand the rationale behind its slight delay, because we need to ensure that there is success within it. This point was highlighted by my noble friend Lady Browning and the noble Baronesses, Lady Pitkeathley, Lady Tyler, Lady Jolly and Lady Wheeler.
The Green Paper will be key in how we move further forward and in the integration of the carers strategy. Our ageing society means that we need to reach a longer-term sustainable settlement for social care, and further reform is required to meet this challenge. The Government, as noble Lords know, have committed to publishing the Green Paper in the autumn, setting out proposals for reform. This is so that the plans for social care can be integrated with the new NHS plan, which will be published around the same time. The Green Paper will build on the additional £2 billion over the next three years that we have already provided to meet social care needs. I recognise the points made by my noble friend Lacy Browning, the noble Baroness, Lady Pitkeathley, and others about the need for the funding of carers to be revisited, perhaps by the twice-yearly review that will take place as we look at evidence and take on board the action plan and the gaps in services that there might be.
I turn briefly to specific questions raised by noble Lords. The noble Baroness, Lady Tyler, asked about access in rural areas. By passing the Care Act, the Government established the national threshold that defines the care needs that local authorities must meet. This eliminates the postcode lottery of eligibility across England. That applies equally in rural areas. She also raised carers’ respite in rural communities. Local authorities have a duty to offer information and advice to carers, including signposting carers to support, be that through the council directly or through local voluntary organisations. Of course, this is equally true in rural communities as in urban areas.
The noble Earl, Lord Listowel, asked about policy on carers in Parliament. The All-Party Group on Carers brings together carers from across the political spectrum to promote awareness and share knowledge and understanding of the needs of unpaid carers in Parliament. I am afraid I do not know too much more about its work, but of course the noble Lord can seek further information.
The noble Baroness, Lady Brinton, said that short breaks and respite care for children should be included, and I addressed that issue in my earlier remarks. However, like her, I agree that funding is absolutely crucial to be able to give those breaks, and we need to look at that area. Although I indicated that we have made some money available, we need to assess whether those resources will be sufficient in the longer term.
The noble Baronesses, Lady Gale, Lady Brinton and Lady Wheeler, raised issues around amendments to benefits to ensure that they meet specific needs. Carers have access to the full range of social security benefits according to their personal circumstances. Since 2010, the rate of the carer’s allowance has increased from £53.90 to £64.60 a week, which means an additional £530 a year for carers. I cannot say what will be in the Green Paper, but I will feed back the comments made about resources and benefits.
I am conscious that the clock now shows 18 minutes. The noble Baroness, Lady Jolly, and my noble friend Lady Redfern raised the issue of a named social worker. As in the NHS, where we have a named nurse, it is clear that we should look at that, if we can. Obviously I cannot commit to that, but I will look at that area and feed back. The noble Baroness also asked whose responsibility it is. This action plan is cross-government, but it will be for the Department of Health and Social Care to look at actions, and we will carry out a two-yearly review.
The noble Baroness, Lady Brinton, asked about funding and the engagement of carers returning to work. I will write to the noble Baroness on that, and will write to all noble Lords if I have not answered any questions. The department has developed e-learning resources in partnership with Carers UK to look at opportunities for learning in volunteering and work.
The noble Baroness, Lady Jolly, asked who will assess the cap, and which sponsoring Minister will be responsible for the assessment. As I indicated, it will be the Department of Health and Social Care.
An interesting point on teacher identification was made by a number of noble Lords, particularly the noble Baroness, Lady Jolly. The DfE and DHSC are carrying out a review of identification that will lead to young carers being identified and therefore receiving better support.
I am conscious that my time is up. However, I want to put on record that this has been a valuable debate. I understand the issues that noble Lords have raised, and I will take them all back to the department and feed back noble Lords’ views.
My Lords, I too am grateful to all noble Lords who have spoken today. Your Lordships are very well informed, and I thank noble Lords for bringing their personal experiences to the Chamber. I also thank other noble Lords, who are in the Chamber listening to the debate. I thank the Minister for her words of support, and I look forward to actions being taken.
We have all expressed our appreciation, in words of understanding and compassion, for what our army of carers do for their dearest and, obviously, for the country, and our desire to improve their everyday experiences, ensuring that carers also have access to financial support when they need it. I am pleased that we have all had the opportunity to debate the action plan, and I look forward to the next stage of receiving the Green Paper. I hope the Green Paper will ensure the sustainable, long-term future of social care. Once again, I thank all noble Lords for their participation today. I beg to move.