Carers

Paul Burstow Excerpts

Thursday 20th June 2013 Commons Chamber

[Paul Burstow (Sutton and Cheam) (LD)]

I beg to move,

That this House has considered the matter of carers.

I start by thanking the Backbench Business Committee for choosing this as the first debate of this parliamentary Session since the re-establishment of that Committee. I very much appreciate the fact that within the space of a few days after the celebration of national carers week, the Backbench Business Committee was able to grant us this time to examine how better to support carers in this country and to recognise the extraordinary contribution that each and every carer makes to their families and our society. I am grateful to my hon. Friend the Member for Banbury (Sir Tony Baldry) and the hon. Member for Worsley and Eccles South (Barbara Keeley) for their support for this application and for the contributions that I look forward to hearing from them later in the debate.

As I said, last week was national carers week. With over 10,000 events up and down the country—I am sure that many hon. Members will have had the opportunity to participate in them in their constituency—this was the biggest carers week so far. Here in Westminster, MPs were invited to a variety of events, including a speed dating event with carers with a wide range of life experiences. I had the opportunity to meet, among others, a woman called Karen whose husband has Parkinson’s. She told me about her experience of being a carer for someone with that particular condition and about the isolation she felt, having taken on that caring role. She conveyed a sense of being increasingly excluded from participating in many aspects of society. I met other carers involved with Marie Curie, who told me how, because of the nature of the diagnosis and the rapid progression of the cancers in question, they experienced additional strains and burdens in trying to get the right support at the right time for their loved ones. The week concluded with a lively carers question time event, in which the Minister and a range of experts participated.

This year’s theme was “Prepared to Care?” It highlighted the fact that people who take on caring roles are often not prepared for the physical and emotional impact of caring, nor for its impact on their lives in other ways, not least financially. In that sense, it is worth stressing that this is not a “them and us” issue. It is easy to think about this as something that is going to happen to other people, whereas the figures clearly show that three out of five of us will be a carer at some point in our lives. It will touch all of us, either through personal experience or through our family’s experiences.

I want to pay particular tribute to the carers I have met over the years in my constituency during my time as a Member of Parliament. I want to thank the Sutton Carers Centre for being a lifeline for thousands of carers—young and old alike. The carers centre in Sutton has been my guide and teacher on carer issues over the past 15 years. Whether through shadowing carers to learn directly from them or meeting carers at the centre, I have found that the things they want—the things they tell me they want—are not impossible or unreasonable. They do not want to feel that everything is a constant battle—a battle to get a diagnosis, a battle to get an assessment, a battle to get support, a battle to get a break, or, indeed, a battle to navigate around the system.

Over the years, I have met and listened to many carers in my constituency and I have met carers for whom the lifeline that keeps them sane and keeps them connected is not the formal social care support, nor even the carer centre. It may be, for instance, the local bowling club, as I learned from one of the carers whom I shadowed. The determination of the club’s members to support a friend was the most important thing in that person’s life. Not enough is made of such informal, often fragile networks of support, although they often represent the vital difference between just surviving and having a life.

There is clear evidence that the caring role takes its toll on people, physically, emotionally and financially. Six out of 10 carers report experiencing depression because of their caring role, and, as I have said, caring can be a lonely business: three out of five carers say that they have experienced difficulties in maintaining relationships with friends. Another problem is the desire of many carers to stay in the workplace so that they can remain connected through their work. More than 3 million are trying to balance their caring responsibilities with paid work, often at the expense of working hours or their career prospects.

Last June I hosted a carers summit with the forum Employers for Carers, led by BT. The aim was to explore opportunities to help carers to remain in the workplace. BT and other members of the forum, such as British Gas, have a good track record in that regard. They invest in their staff and want to retain them, so identifying and supporting carers seems logical to them. The cost to the bottom line of a business of replacing a member of staff can be huge, and one of the purposes of the summit was to enable more employers to see the business case for carer-friendly employment practices. The Government subsequently established a “task and finish” group to consider ways of creating an environment in which people could balance their caring responsibilities with their careers. That work is vital.

According to a recent survey conducted by YouGov for Carers UK, an estimated 2.3 million people have given up work at some point to care for an older or disabled loved one. One in four gave up work or reduced their working hours because the cost of replacement care was too high, and a similar number reported that services were not flexible enough to meet their needs. The impact of being forced to give up work to care for a loved one on an individual’s finances alone is clear, but the London School of Economics has estimated that the hidden cost to the economy—in benefits and lost tax revenues—is a staggering £1.3 billion a year, every year. When lost earnings are taken into account, the figure can rise to as much as £5.3 billion. That is not a cost that the United Kingdom can continue to bear as a consequence of a failure to act and provide the safeguards, supports and systems that would enable carers to remain in employment.

There is an urgent need to us to reframe the debate. We must stop focusing on the burden on the economy, and see caring as an asset and an opportunity. We must begin to view it in the way we view child care support and services. Carers must be entitled to more flexibility at work, although the Government have done much in that regard. Given the scale of demographic change—the over-85s are now the fastest-growing section of the population, and their number is set to double by 2030—and the growing proportion of “sandwich workers” who are attempting to juggle paid work with the demands of caring for both children and older relatives, the provision of flexibility is becoming an imperative. The Government must also think about how the market for low-level support services such as cleaning, shopping, gardening and befriending can be increased and, crucially, brought into the formal labour market.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate the right hon. Gentleman on securing the debate, which is timely given some of the things that have been happening in old people’s homes. Does he agree that there is a case for asking employers to help people who have to care for a family member? Such people are often under stress, and if they have to give up their jobs, their standard of living will fall as well.

[Paul Burstow]

That is a key point, and one that I want to put to the Government very strongly. Carers can only be helped to remain in the work force and balance their working lives with their caring responsibilities if the right substitute care and flexibility are available, and if employers have the right attitudes in the first place.

[Kate Green (Stretford and Urmston) (Lab)]

Will the right hon. Gentleman give way?

[Paul Burstow]

I will take one more intervention, but I must not take too many more, because I have only 15 minutes in which to speak.

[Kate Green]

Could not public sector employers be exemplars in this respect? Can the right hon. Gentleman suggest any ways in which such good practice could be spread throughout the public sector?

[Paul Burstow]

The hon. Lady is absolutely right to say public sector employers should be—and could be, and must be—exemplars in this. Indeed, it would be great if the NHS itself was an exemplar in this area, yet as I will come on to say, I think in too many ways institutionally the NHS is rather biased against carers, and certainly blind to their needs in too many cases.

There is an economic reason why we need to do more in this area. It is estimated that as many as 50% of those involved in personal and household services operate in the grey economy. This represents a further missed opportunity in terms of job creation and lost revenue to the Exchequer. Looking across the channel to France where work began almost a decade ago to address a number of these issues, market development for homecare services has led to the creation of an additional 2 million jobs, with the industry becoming one of the biggest growth sectors in that economy.

There are clearly lessons to be learnt in how to support and strengthen carers’ ability to care in a way that supports the wider UK economy. I hope the Minister will be able to tell us when the “task and finish group” recommendations will be published.

Moving on, one of the most practical ways to support carers is to provide them with breaks from caring. That can help reduce the stress and the often constant demands that caring involves, and allow them to have the time to improve their own physical and mental health.

In recognition of the value of carers breaks, the Government committed in the 2010 spending review to spend £400 million over four years on breaks for carers living in England. As the Minister at the time, I was convinced of the importance of giving carers a break and knew that it would make a huge difference to their lives. I therefore regret that the evidence suggests that that has not happened. Monitoring by the Carers Trust for the year 2011-12 found that action on the ground had often been slow or non-existent. Despite clear reporting requirements, in many areas it was impossible to track how money had been spent, and in a small minority of cases nothing at all had been spent on services for carers. Some fantastic work has been done, but progress has remained appallingly slow. To be fair, this problem has dogged not just the coalition Government, but successive Governments.

I ask this question: what is the common factor? The common factor is the institution we are using to direct the money, which is the NHS. It does not see carers as significantly important contributors to it, and therefore it does not see this money as worth spending on them. That has to change.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I acknowledge the right hon. Gentleman’s efforts when in government, and I agree that this issue has dogged successive Governments. I wonder whether we have reached the stage where we have to give some clear statutory rights to carers in respect of respite care, because whatever organisation has the budget, it does not seem able to recognise that this is an essential need if a person is going to continue to be a carer. Would the right hon. Gentleman entertain that approach?

[Paul Burstow]

To be honest, in this area the NHS is probably drinking in the last-chance saloon. If we do not see progress, legislation may be necessary. There is another way in which the money could, and should in future, be earmarked for this purpose. There have been transfers from the NHS to local authorities for the support of social care more generally, and in some local authority areas that has happened with the carers break money as well; it has been transferred. It has not happened everywhere, however, and I think it should now become mandatory, so this money gets spent for the purpose the Government said in their spending review it was for. That is a perfectly reasonable thing to expect, and the Government need to reflect on three years of this money not getting where it needed to be, after a number of years of that under the last Government as well.

A survey by Carers UK found that in one in five cases where a person who was receiving care from family or friends was admitted to hospital as an emergency, that could have been prevented if the carer had received more respite care and support. This makes big differences financially to the NHS. It uses resources better, and that is why it beggars belief that the NHS has not yet made sufficient progress, with its partners in local government, to improve access to breaks for carers.

Under the health service reforms, with clinical commissioning groups taking the lead, there have been some examples of improvement, such as in Huntingdon, where there is an interesting carers breaks project led by GPs. Partnered with Crossroads Care, they identify carers by meeting them socially, and prescribe breaks. Carers who are met in that way tell me they have for the first time had the experience of having raised their needs as carers and seen that translated into tangible action that made a difference for them. We need to see more of that. It is a vital lifeline.

As has already been said, there are huge issues to do with identification of carers. Research by Macmillan has found that while over 70% of carers came into contact with GPs, doctors and nursing staff, only 11% of all carers reported that they had been identified as a carer by a health professional. We as a Government talk about making every contact count, and we should do so when it comes to identifying carers. I hope the Minister can look afresh at what we can do to challenge NHS England to fulfil its obligations. I hope the National Audit Office will take a look at how successive Governments have attempted to engage the NHS with the carers agenda.

I want to finish by talking briefly about the Care Bill. It is no small thing that this is the first ever Government Bill to provide for carers’ rights. Until now, the cause of carers has been advanced by private Members’ Bills. Let me place on the record my appreciation for the work of the late Malcolm Wicks, whose Carers (Recognition and Services) Act 1995 was a landmark in the rights of carers and a fitting legacy for such a thoughtful and generous Member of this House. For the first time, the Care Bill enshrines in legislation carers’ rights to an assessment of their needs and, importantly, establishes a duty to meet those needs which are eligible. It also establishes clearly the need to consult and involve carers in decisions about the care of those they care for.

Although the Care Bill is hugely welcome, inevitably there are gaps and unintended consequences that must be addressed if all carers are to get the support they are entitled to. Following the Government’s welcome announcement last week of their intention to amend the Children and Families Bill to ensure that the rights of young carers are as strong as those proposed for adult carers, we must see the necessary changes to it and the Care Bill, and ensure that the rights of parent carers of disabled children, which have so far been neglected in both Bills, are not allowed to fall through the cracks.

I look forward to colleagues’ contributions and hearing them draw on their experience of engaging with carers in their constituencies. I know from talking and listening to carers, and from tweeting about carers’ issues, the genuine and palpable outrage they feel because all too often they are overlooked and under-supported. We need to change that. The Government are making good progress, but more still needs to be done.

--- Later in debate ---

[Barbara Keeley]

I thank the Minister for that point, but I have to tell him that he and the children’s Minister have to start to accept that making reassuring noises and having meetings is not enough.

[Paul Burstow]

The hon. Lady is absolutely right to be pushing this issue forcefully. We were given a commitment by the Under-Secretary of State for Education, the hon. Member for Crewe and Nantwich (Mr Timpson) last week that amendments would be drafted, and presumably they will be tabled in the House of Lords. It would helpful for us to know, and to hear from this Minister, that the Government will shortly be publishing the amendments that will be made to the Care Bill as well as those that will be made to the Children and Families Bill.

[Barbara Keeley]

I thank the right hon. Gentleman for that point. I am, however, going to push the matter with the Minister because there was an opportunity in this regard. New clauses were moved during the remaining stages on the Children and Families Bill last week that were copies of clauses from my Bill, and they would have required those bodies that I talked about to have policies in place. We are not talking about a large financial commitment; we are talking about bodies having policies in place. Our schools, our colleges and our higher and further education institutions should have policies in place to recognise young carers, but up and down the country they do not have those. The disappointment that organisations outside here that support young carers will have felt results from the fact that the debate was managed last week so that those new clauses were not reached. That does not show good faith, and if I were a member of the coalition of organisations that support young carers, I would look at that and say, “I don’t know what the Government are going to do.” The Minister will have to accept that they are still disappointing people who have not been protected sufficiently by the law.

I conclude by touching quickly on the financial context of social care and how it affects carers. Giving carers rights in the Care Bill is indeed a positive step, but the Local Government Association reminds us that the Government’s austerity programme and the need for further savings do not fit well with the aspirations of the Bill. Councils have had to reduce their adult social care budgets by 20% over the past three years. At least a quarter of those cuts are from reductions in services and increases in charges. Almost 90% of councils only meet needs that are at the substantial or critical threshold.

Staff at our local carers centre told me that carers are being affected by the bedroom tax, the increase in the value of non-dependent deductions, fewer sources of grant funding, and reductions to care packages that appear to be driven by cutting costs, not by changes in need. That is particularly true where they are caring for somebody with a learning or physical disability. Worries continue into the future when the change from disability living allowance to the personal independence payment starts to affect carers. The Government’s own impact assessment published in February indicated that almost 10,000 fewer carers will be entitled to carers allowance by 2015 as a knock-on consequence of the loss of disability benefits following the introduction of PIP. Carers UK has calculated that this represents a £31 million cut in support to carers. We should bear in mind that if those carers were left unable to care as a result of not having access to those carers benefits, replacing the care that they provide would cost at least £300 million in replacement adult social care services. That is a serious point.

This morning I asked a question about the loss of £28.3 billion of income for disabled people over the next five years through the combination of the welfare changes being made. We must take on board the fact that that loss of income will hit the carers of those disabled people. Carers, as we learned during carers week, are prepared to care. We must do better in supporting them.

--- Later in debate ---

[Sarah Newton]

I absolutely agree that local authorities should be remorselessly focused on the best possible outcomes for the people they have a duty to provide care for. They should also understand that while the vast majority of people are not eligible for local authority care, local authorities have a responsibility as market shapers in their localities to ensure that private, third and voluntary sector organisations are able to provide the care services that most people pay for themselves. By constantly engaging in a race to the bottom, they are undermining the ability of those organisations to provide services to the community. Most private or third sector domiciliary care providers need a certain amount of contracts or business from the local authority.

[Paul Burstow]

My hon. Friend is making an important point about the patchy quality of domiciliary care. There are good examples, such as in Wiltshire, where the service has been remodelled to focus on outcomes. However, there is an issue about whether the Government have the necessary powers to ensure that where poor commissioning practice is allowing contracting by the minute, which is resulting in sub-standard care to an individual, they can ensure good quality commissioning practice in the future. The Joint Committee on the draft Care and Support Bill has recommended a change in the law and the Government are doubtful of its need. Does she agree that the Government need to keep thinking about that and perhaps come back with an amendment?

[Sarah Newton]

I back what my hon. Friend says. The Joint Committee’s report was excellent and showed Parliament at its best. People with tremendous experience from the House of Lords and this place worked together to scrutinise and improve that excellent Bill. The Government should be commended for introducing it at a time of economic restraint, especially as it has financial consequences: spending more money on supporting carers is a bold thing to do at the moment and it underlines the great value we put on carers. I back my hon. Friend in his call for an amendment, because if local authorities are tempted to avoid doing what we would all regard as the right thing—to look after the most vulnerable people in our society—we need to tighten up the law to remove that temptation from them.

I would like to share another issue that was raised in carers week. The strong message from carers was that they do not always feel involved in the decisions made by professionals about the people they are caring for. The Government have, rightly, enshrined in their health and social care reforms the principle that “No decision should be taken about me without me.” I would like to extend that so that “No decision is taken about the person I am caring for without me.” I have heard far too many cases, in my own case work and during carers week—particularly from parents caring for children with disabilities—where substantial decisions, on whether their children should be cared for away from their home many hundreds of miles away, were considered without proper discussion with the parents. That is absolutely wrong. There is a prevalent attitude among some professionals that they know best: “Trust me, we know what is best for your child. Trust me, we know what is best for your wife or your husband.” While I would like to be able to trust all professionals—we think that by and large they do have the best interests of people at heart—there should be openness and transparency. Carers should be involved in decisions, so that there is a joint agreement and an understanding about what is in the best interests of the person being looked after.

On a more positive note, I would like to share some of the good practice I saw during carers week. I saw great examples of innovation involving the voluntary sector, in particular. We have talked about statutory provision and what employers can do, but broader civil society and the voluntary sector have an enormous role to play too. I would like to share two examples from Cornwall, one of which is from my own constituency.

A group of people in Falmouth in my constituency responded to the Prime Minister’s dementia challenge by wanting to ensure that everybody in the community supported people with dementia. More than 200 organisations in Falmouth got together to make it a dementia-friendly community. I was proud, in my hometown, to be at the launch a couple of weeks ago, and I was proud that it was the first town in Cornwall, and probably one of the first in the country, to be a dementia-friendly community.

What does it mean to be a dementia-friendly community? It means that the shopkeepers in the high street have gone through awareness training. It means that we have dementia cafes and that the people in the youth centre are aware of people with dementia. Overall, it means that people who suffer from dementia, or are caring for someone who suffers from dementia, can go into Falmouth with confidence, knowing that they will receive a warm welcome in the shops, libraries, public spaces and the youth centre. The people there will understand more about dementia and some of the behaviour that comes with it. Some people might find that behaviour a little bit challenging and scary, which often makes the people who care for someone with dementia want to stay at home. They can be fearful of the response they will receive in a public space and end up becoming isolated. I can honestly say that people with dementia will receive a very warm welcome in Falmouth, thanks to the huge amount of work done by a small group of volunteers ably led by the Bridges, who are Rotarians in Falmouth.

The whole community has got behind this exciting project—indeed, so much so that another group of people in Falmouth, led by a former nurse, Lisa Dann, has been working with Dementia UK over the last year to raise enough money for two admiral nurses. For those who do not know, admiral nurses, who are similar to Macmillan nurses, are specialist nurses who work alongside those with dementia and their carers, providing a lifeline for people coping with what can be a very difficult condition. Lisa was motivated to set up the charity and raise funds because of the poor support that her mum and her family received when her dad was suffering, before sadly dying from dementia.

Lisa has created a fantastic legacy in recognition of her father by raising enough funds—£60,000 in one year, which is a great credit to her, her team and the community—for the whole of Cornwall to have two admiral nurses. Her group is working innovatively in a partnership with a large social enterprise in Cornwall—Cornwall Care, which is the largest independent care provider in the county—to make the scheme sustainable. The group will be raising more money for more admiral nurses, which will provide a huge amount of support for carers, as well as people suffering from dementia. That is a good example of how the voluntary sector and volunteers can create a caring environment for carers.

--- Later in debate ---

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I congratulate the Members who helped to secure today’s debate.

During the debate on the Queen’s Speech, I referred to the experiences of two carers in my constituency. One was Lynne Hanslow, who cares for her 96-year-old father, keeping him out of residential care. All that she asks for is a fortnight’s respite break each year, but this year, despite having given the council four months’ notice, she was denied that break and was abused by a local authority employee when she complained about her treatment. Not surprisingly, Ms Hanslow ended up having to go to her GP. A carer had been made ill by neglect and worry.

I have spoken to the council’s director of adult services, but so far Ms Hanslow has not received the full apology that she deserves, along with a promise that that will not happen again. I believe that the council’s chief executive should make the apology, thus sending the signal that he means to take the needs of carers seriously and will not stand for his staff treating them with contempt. Ms Hanslow’s experience is one of the reasons for my conclusion that statutory respite care should become a legal, enforceable right for carers. We have tried the other approaches for too long.

I also mentioned the case of Margaret McGarry. She cares for her frail elderly mother, who suffers from dementia. Her direct payments have been suspended, apparently in retaliation for her having had the temerity to go to a solicitor because she felt that the local authority was being unreasonable in terms of the flawed level of support that it was prepared to provide. There should be a much simpler independent review process for carers like Margaret McGarry who are treated in such an appalling way. The current system seems almost to be weighted in favour of officials and bureaucrats, at the expense of carers. I wonder whether the time has come for local authorities to create carers champions to look out for carers’ interests. I have come to the conclusion that local authority complaints procedures in much of the NHS these days are not about problem solving at all. They are about process. They are almost a game to create an illusion of accountability. I think we need a champion who will listen to carers’ concerns.

[Paul Burstow]

I think it is worse than that. The balance of power is entirely wrong. It is too much on the side of the local authority to which the individual is complaining. That is why we need advocacy, but it is also why we need to look at the case made in the Joint Committee report on the draft Care and Support Bill for the need for a tribunal service, to start to address these matters in a more impartial way, detached from the local authority. How can a local authority investigate itself?

[Steve McCabe]

I certainly agree with that, although I would be reluctant for us to have a complex system that the carer has more difficulty accessing. I take on board the right hon. Gentleman’s point, however.

In arguing for a champion, I am looking for someone like a councillor, with sufficient clout to intervene and right wrongs and cut through the madness and bureaucracy that all too often ends up punishing, rather than protecting, the carer. That does not mean we should not also have further review and appeal processes, but I want us to have something simple that people can make use of and that will make a difference.

A champion might also do more to make sure the voices of ordinary carers are heard. I am thinking about the hidden carers that so many Members have mentioned—the people who are too busy caring to have time to attend the consultation sessions, which are organised to suit the convenience and working hours of the NHS and local authority officials, so these people are never heard.

[Steve McCabe]

I welcome what the Minister says. I am able to identify these people in my constituency, and I do not understand why it is so hard for the caring organisations to identify them.

I wonder why we do not say that at the point when an individual qualifies for attendance allowance the local authority should be notified and instructed to commence consultations with the person and their carer, with a view to establishing a long-term care plan and review strategy. That could reduce the occurrence of crisis care episodes, and the authority could simultaneously start to develop a support plan for the carer, so the needs of the carer are at the centre of the care plan.

[Paul Burstow]

The hon. Gentleman’s point about attendance allowance is interesting and important. He may know that this week the Strategic Society Centre think-tank published an interesting report setting out how this area might be reformed in a way that provides just what he has described: a front door into the social care system. Does he share my surprise that we have a system that does not talk to social care at least in part because it is entirely paper-based? It is not electronic, and perhaps the Department for Work and Pensions needs to consider putting it on that basis, so the information can be shared more freely.

[Steve McCabe]

I think I probably would agree with that, although the right hon. Gentleman must recognise that the Government are moving increasingly towards systems that do not allow for face-to-face exchange. I understand that that is one of the major disputes about what is happening in the DWP. I think it would make classic sense, however. All of us hear enough about joined-up government, and this is one area where a bit of joined-up government could save money and provide a much better service.

--- Later in debate ---

[Paul Burstow]

Will my hon. Friend confirm that the Government will be publishing amendments to give effect to this within the next week or two? Will he set out the timetable? Will the Government also address the other gap, which is the one regarding parents who are caring for disabled children? We need to make sure that none of those who have caring responsibilities get left behind.

[Norman Lamb]

I cannot give my right hon. Friend a specific time scale for what might happen—he needs to watch this space, and I am sure he will. On the question of parent carers, the view of my hon. Friend the children’s Minister is that there is sufficient provision under section 17 of the Children Act 1989 to provide for the assessment and support of disabled children and their parents. In addition, special educational needs reforms in the Children and Families Bill will give parents more choice in and control over the support they and their children receive.

--- Later in debate ---

[Paul Burstow]

In that case, I shall be very brief indeed, Mr Deputy Speaker, and simply thank all those who contributed to this debate, ask the Minister to write to all Members who have taken part in the debate about the issues that he did not have time to address, and underscore the fact that this debate recognises the invaluable work of carers and the fact that they are the backbone of our care system. Without them we would not have a health and social care system worth its name. We owe them a great debt, and as a result of that debt we must strive to do more.

Question put and agreed to.

Resolved,

That this House has considered the matter of carers.