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Personal Care at Home Bill

My Lords, I declare an interest as vice-president of Carers UK. I want to give a carers’ perspective on this Bill, but let me be clear about what I mean when I use the word "carer", as there is an increasing tendency to conflate it to mean both the families, including the neighbours and other informal carers who provide care free of charge, with what I would properly term "care workers", or those people who are paid to provide care. I will talk about the informal sector. This Bill will, for the first time, provide for people who have savings or an asset such as a house to be entitled to free care from the state. As Carers UK has been campaigning for that for many years, naturally I support it. It will help families to meet the costs of care, which can be very high and which contribute to the poverty faced by disabled people and carers. A survey of 1,700 carers in December 2008 found that 66 per cent were spending their own income or savings to pay for care. It also found that 74 per cent of carers were struggling to pay essential utility bills and that, because of the costs of care, 52 per cent were even cutting back on food. Carers UK research has always found that carers want to care for their elderly and disabled relatives at home whenever possible. They also want to ensure that the person for whom they care gets the best possible care, which usually means looking after them at home, as that is what both parties want. This Bill will support those wishes. However, realising the desire for people to receive care in their own home should not be based on the assumption that families will provide the levels of care, which may be inappropriate given their circumstances or detrimental to their health or well-being. We need clarity about the expectations placed on carers, as the noble Baroness, Lady Gardner, reminded us. One in five carers is currently giving up paid employment in order to care, so removing one element of the cost that they face will help families to manage their finances and remove some of the stress of caring. Carers, of course, have strong views about charging for care. They want an element of care to be free of charge. As I said, Carers UK has been campaigning for this since the introduction of community care in 1993. Early research in 1995 found that, as a result of councils increasing charges, one in four carers and their families were experiencing hardship and that around one in seven were cancelling services. In the 1995 research, three-quarters of carers surveyed thought that a guaranteed package of services should be free irrespective of income. I am pleased to say that that research was carried out for us by the noble Lord, Lord Warner, who said that, ""by the year 2000, all carers providing over 35 hours per week should have access to a respite care programme which provides regular weekly and some weekend breaks together with an annual holiday"." He costed this at £1.4 billion per year and said that, ""public expenditure of this kind looks a good bargain compared with the alternative of letting carers collapse and taking those they care for into residential accommodation at a cost to the public purse that would put 20p on income tax"." He suggested that guaranteed care should be free of charge to carers. The report was very influential and widely circulated at the time. We were very grateful to the noble Lord, Lord Warner. As we know, criticisms have been made of this Bill. The debate in the House of Commons suggested that families would give up caring in order to receive free care. The evidence published by the Joseph Rowntree Foundation two years ago, after the implementation of the model in Scotland, found very little evidence of this. Most families continued to provide personal care because this is what they preferred to do. The modelling provided by the Government mirrors that. We consistently underestimate the willingness of families to provide care and overestimate their desire to get out of the caring situation, however hard that situation may be. Carers are the absolute antithesis of what people are wont to call "broken Britain", and politicians would do well to remember that. To give noble Lords a case-study, Alan has cared for his wife for many years since she had a stroke. He is now in his late 60s. They have applied for continuing care, but have been turned down, and they have spent down their savings to pay for care. The wife is severely disabled—she needs to be moved several times in bed, and regularly stops breathing and needs to be resuscitated. She needs help with all forms of personal care. Alan says, "if I had got free personal care years ago, it would have made such a difference to my life. I am sick of poor quality care and having to pay for it as well". The Government have said that this Bill is a stepping stone towards the longer term goal of a national care service and I certainly welcome that vision. This Bill is by no means a solution to the problems that we face with social care—I am the first to admit that—but it is a step along the way. The view that I have taken for years about changes to the social care system is that change should be incremental, not revolutionary, and should come—salami-like—in small, sometimes very small, slices. That was the case with all the legislation for carers. The first carers Act in 1995 was not what I or carers wanted, but it was step along the way. It could be used as a launching pad to argue for other, greater rights for carers, and that has proved to be the case. I know that the White Paper on social care is expected soon. It will be important that the Government look in that at the wider picture, and not just at alleviating stress at the heaviest end of need. For example, would support put in earlier mean that fewer carers would break down and that families would thereby be enabled to go on caring for longer? Would reablement and more independence for older people make it easier for their families to continue in paid work? People giving up paid work to care for a relative is a cost to the economy and to business which we can ill afford at the moment. Can the Minister assure me that the White Paper will look at the wider economic impact for families, rather than merely at expenditure with regard to residential and NHS costs? There is no doubt that carers have concerns about the Bill. The evidence from some councils is that they are poorly assessing disabled and older people by assuming that families will provide care. This is against the current legislation, but it is also short-sighted, since it can lead to families struggling without appropriate help, as I have already said. Most carers want to continue to provide care and will continue to do so. However, they do not wish to be taken for granted and they do want their needs and support to be taken into account when looking at what services will be provided to the person being cared for. Can the Minister assure me that the Government will ensure that guidance on this Bill clearly states that local authorities should not assume carers’ willingness and ability to care, but that they should check with them that they are able to do this? Will the Government stress in their guidance that the sustainability of the caring role must be carefully considered in assessment? If the carer is at risk of breakdown because insufficient support is provided, this will result in enormous costs for several people rather than limited costs for a few. I also seek assurances from the Government that if this Bill becomes law its operation will be regularly reviewed. Finally, I remind your Lordships that all the significant charities and third sector organisations supporting carers and older people have issued statements in support of this Bill. They said: ""Care charges for those with critical needs are often a crippling cost to families already struggling with the financial impacts of illness or disability. This Bill would mark an historic end to means-testing and charging for some of the most vulnerable people in our society to provide for their most basic care needs. The older and disabled people, families and carers we represent have long called for an end to charging for care services—and"," these people, ""would not forget if this opportunity was missed to end unfair charges for those most in need."" There is no doubt, they go on, that, ""the care and support system is in need of a complete overhaul, and this Bill does not come close to solving the inequalities, inconsistencies and profound funding challenges"," which we face. ""However the principles set out in this Bill are a vital first step in reforming social care"." I hope your Lordships will remember that.