Carers (Equal Opportunities) Bill - Second Reading Speech

Mr. Paul Burstow (Sutton and Cheam) (LD): I add my congratulations to the hon. Member for Aberavon (Dr. Francis) on his success in the ballot, his wisdom in selecting such a subject as the basis for a Bill, and his diligent drafting to get it to where it is today. I appreciate the level of work in negotiations and discussions of the nuances of the text and how Government lawyers and others look over that. That process is ongoing and I appreciate the hon. Gentleman's hard work.

I come to this debate not only to respond from the Front Bench on behalf of the Liberal Democrats, but with the honour and privilege of being one of the Bill's sponsors. That might indicate my party's general approach to the Bill: we support it and hope that it will secure support from the Government and ultimately make its way on to the statute book. I agree that it is important not just to progress this legislation to enactment but to ensure that it is implemented, rolled out across the country and leads to the changes in attitude and culture to which hon. Members, especially the hon. Member for Reading, East (Jane Griffiths), have referred.

As has been said, the Bill is about the health and well-being of people; it is about stepping back and recognising that when one looks at a carer, one should see first the person and identify their needs as a whole rather than trying to isolate their role as a carer. The latter is not possible, yet all too often we have tried to make that distinction. The Bill is about the culture and attitude in organisations, and the way in which society values and regards carers. It is about knowledge and information. Such knowledge is all too often held in the wrong places or by people who do not appreciate that it is their duty to share it with carers, their families and others. This is all about ensuring that people have access to that information, and that in turn they can access the services and support to enable them to realise their full potential and to enjoy a rounded life in which they feel able to continue to discharge what they see as their responsibility to care for a loved one.

The Bill is one of a number over the years that have sought to drive forward and widen the rights of carers. That process began with the Carers (Recognition and Services) Act 1995, which established for the first time the right to an assessment. However, that right was coupled with the right of the individual who needed care to seek an assessment. In effect, the Bill blocked the opportunity of carers to receive a separate assessment once the individual receiving care services chose not to have a local authority assessment. That anomaly was rightly sorted out by the Carers and Disabled Children Act 2000, which decoupled the requirements on the assessments of carers and of those receiving care services.

The Bill rightly goes on to recognise one thing that we missed when scrutinising the 2000 Act: the need to place a duty on organisations that carry out the assessments and others to tell people that they are entitled to such assessments. The hon. Members for Tiverton and Honiton (Mrs. Browning) and for Reading, East rightly asked why on earth we should have to include such a provision in a Bill. As today's speeches have shown, it is necessary to create a clear duty to tell people of their entitlement so that a real difference can be made to their daily lives.

I agree with many of the comments of the hon. Member for Tiverton and Honiton, and I want to pick up her point that we are not talking about rocket science or things that necessarily add greatly to expenditure from the public purse. We are talking about doing things differently in service provision and the way in which organisations are configured and operate. Ultimately, we are talking as much about saving money as we are about spending it. I will come to how the Bill could result in profound savings and make a difference to quality of life.

It is right to state clearly that we must support carers in their caring role, but that we must go beyond that. As has been said, carers are undoubtedly the backbone of our care system. The 2001 census revealed that there were 5.9 million carers. The Carers UK report, "Without Us", which used an Institute of Actuaries model, came up with the savings to the rest of us in society made by that caring: £57 billion. It is worth bearing in mind that the estimate by Carers UK back in 1993, on the previous occasion that such a figure was produced, was £34 billion. Therefore, in the space of eight years, the estimate of the value of carers' contributions in this country has risen by 70 per cent., which is much more than the rate of inflation. The cost of alternative care has risen by 42 per cent. over the same time. The proportion of care provided by carers has substantially increased over that period; it has more than doubled.

I shall not dwell on this point today-perhaps it is a matter for other debates-but it is interesting to note that more home care hours are provided today to fewer households. I cannot help but wonder whether there is some relationship between the fact that informal carers are caring for more hours and the state is caring for fewer people in their households for fewer hours. That is an interesting correlation. I am sure that the Minister will assure me that it is not a statistical one on which we can rely, but it certainly seems to feature in carers' minds. They do not always get access to the services because of eligibility criteria that often have regard for the fact that there is a carer in the household, which results in the downgrading of the need of the person receiving care and they do not receive quite as much.

In addition to the census figure, the Carers UK report, "Could It Be You?" estimated that at some point three in every five people will end up as a carer of a person with a long-term medical condition or disability. The study concluded that, on the basis of existing public policy on community care and so on, by 2037 nearly an extra 3.5 million carers will be needed to cope. That suggests that there will be 9.6 million carers in this country by 2037. On the basis of the £57 billion saving, and let alone any effect of inflation, carers will be saving the country £92.7 billion by that year.

I want to talk about why the Bill can make a difference to the health of carers. There is mounting concern about the health and well-being of carers, particularly among the young and old who are vulnerable in their own right. Carers UK research, "Ignored and Invisible", found that half of carers surveyed had suffered a stress-related illness and that half had suffered a physical injury. According to the Office for National Statistics, those caring for 50 or more hours a week are twice as likely to become permanently sick and disabled and twice as likely to describe their own health as poor.

According to data in the 2001 census, 9,000 children aged five to 15 provide at least 50 hours a week, and a further 18,000 provide 20 hours or more a week. As interventions on the hon. Member for Aberavon revealed, there is a need to explore in Committee how we ensure that children who are carers are properly supported and how we might make the Bill more applicable to their needs by dealing with the interrelationship of legislation on carers and the Children Act 1989.

More than 1 million people aged 65 and over provide care and 382,000 of them are providing care for more than 50 hours a week. Less than a third of those people provided a heavy burden of care, and they did not regard their own health as very good. More than a quarter, or 103,000, rated their health as not good, and 44,000 people over 85-I could not believe that figure, and checked it again today-provided 50 hours or more of care a week. That is a stunning number of people who, at that stage in life, may be afflicted by their own problems, disabilities and ailments. What view would the Government take if 9,000 children aged five to 15 worked outside their homes for 50 hours a week or more? Education Ministers would rightly protest about the effect on their academic education, and others would rightly campaign about their welfare. Surely, that is an unacceptable burden to place on children. Whether it is the young or the over-65s who are working as carers, if they were in paid employment, they would be breaching the European working time directive. There would and should be an outcry about the numbers who are shouldering that heavy burden of more than 50 hours of care a week.

Caring, as has already been said, can seriously damage people's health, and the Bill offers a practical way of addressing that health consequence. At present, as has been said, the NHS is not very good at identifying and meeting the needs of carers, whom it treats as just the friends or relatives of the patient. However, the dynamics of the relationship between the carer and the cared-for is far more complex than a simple dependency. It is about interdependence between the carer and the cared-for at psychological, social and biological levels. I therefore hope that the Bill will enable the NHS to focus clearly not just on patients needs but on carers needs, and will ensure that in health promotion activities carers are given proper priority. The need for training in, for example, lifting, should be properly addressed.

The national priorities guidance of 1998 gave GPs the task of identifying carers by April 2000 although the target was reset to 2002 because of data protection problems. This is one of the few issues affecting carers about which I have not asked a written question, so I wonder whether the Minister would save me the trouble of tabling one by telling us about progress towards that target. It would be extremely useful if he could do so.

I have minor concerns about some clauses, which I hope to explore further in Committee. Clause 1(1) refers to "social services functions". The hon. Member for Kingswood (Mr. Berry) asked whether we needed to take a systemic approach to the problem and embed within local authorities a view of carers needs and welfare that may extend beyond social care and social services departments. Why does the Bill simply refer to "social services functions" in respect of promoting equal opportunities for carers? That issue needs to be considered, and we need to explore in Committee the way in which clause 1 interacts with clause 2.

The hon. Member for Stourbridge (Ms Shipley) made some important points about leisure opportunities, and I know of the need for such opportunities from my experience over the past few years of shadowing carers in my constituency, thanks to the local carers centre in Sutton. I met a woman called Jenny who has a 10-year-old son called James with attention deficit hyperactivity disorder and autistic spectrum disorder. She has struggled to get services, but is now reasonably happy with those that are provided. However, she has a second son, Lewis, who is in infant school. Lewis is an informal carer-he supports his mother, makes her laugh, and looks out for his older brother. Jenny told me how isolated she feels, particularly in school holidays, when it is difficult to manage the play needs of both children and find something appropriate for them. Consequently, school holidays are difficult. The centre identified the need for regular supervised holiday activities to be available for the child with autistic spectrum disorder but also for Lewis. I hope that such provision will be made when the Bill is rolled out across the country. Clause 4 refers to the role of the local education authority. We also need to consider the role of children's trusts, and examine the way in which they will interact with the new legislation in fulfilling children's needs. I therefore look forward to the opportunity to examine the Bill in more detail.

I should like to draw the attention of the House to some good practice because, as been said, we must make sure that the rest catch up with the best. My local authority, the London borough of Sutton, has worked with and for carers since about 1986, and was one of the first local authorities in the country to produce a carers strategy, which it has recently revised and updated. Next week, on 9 February, it will launch its revised and updated multi-agency strategy, which has been drawn up by professionals, but has also sought to involve and consult carers themselves. I should like to put on record my appreciation for the work that the Princess Royal Trust for Carers does to support carers centres throughout the country.

My locality has been blessed with an effective carers centre since 1994. It has helped to change the lives of many hundreds of people by providing the information that we have discussed today. I was struck by some of the words in the carers plan that it produced. For example, one carer said:

"When life is difficult, well meaning people will offer kind words and flowers, but what I really need is practical help and solutions".

Those poignant words from a Sutton carer are included in the plan. At the end of the day, we are offering important and perhaps useful kind words, but we are not necessarily delivering change-change will be a consequence of the Bill being enacted. Life changes when people become carers. Things that they took for granted stop, and it is hard suddenly to find that one's husband or wife needs support, but can themselves no longer provide as much support as they once did. No matter how deep the love that binds people together, caring 24 hours a day, seven days a week grinds people down. The price that carers pay goes unrecognised.

The hon. Member for Kingswood made a crucial point about self-identification. Many people do not identify themselves as carers, as the hon. Member for Tiverton and Honiton said. In my constituency, there are 16,000 carers, but only 3,000 on the register. Three thousand carers show up on the radar, but the rest do not. The Bill must help people to recognise that they are carers, and ensure that local authorities and other agencies take the necessary steps to seek them out. If we do not do so, the health bill and the consequences for society will be huge. I applaud the hon. Member for Aberavon for introducing the Bill, and hope that we can turn fine words and rhetoric into practical action and a tangible change in the quality of life for all the carers in this country.

To read the debate in full take the following link:

http://pubs1.tso.parliament.uk/pa/cm200304/cmhansrd/cm040206/debtext/40206-01.htm#40206-01_head0