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Primary Health Care (Carers)
1.30 pm
Barbara Keeley (Worsley) (Lab): I am pleased to have secured this debate with the Minister. As a newly elected MP, I went to a meeting of the all-party group on carers yesterday, one of the aims of which is promoting awareness in the House of the needs of carers. I am glad to have the chance to do that today.
I congratulate the Minister on his role. He has responsibility for some of the key areas affecting all our communities. Carers are an important group in our society. We know from the 2001 census that at least 5.2 million people give unpaid care to family members and others. We also know from the census that more than a million carers care for more than 50 hours a week. Research into the health impact of caring at such levels is not yet extensive. However, a number of surveys and other research have pointed to the fact that caring has an impact on the carer's health, particularly at the heavier commitment levels, and that will be a major theme in my speech.
I want to discuss the extent to which current practice in primary health care is supporting the needs of carers and suggest what the Government can do to ensure that that support is improved. Those working with primary health care teams find that many say that their workload prevents them from changing practice or taking on new tasks, but many general practitioners and primary health care teams are changing practice and taking on new tasks. I shall set out what I think can be done to move forward on these issues to improve the health and quality of life of carers.
In 1999, the Government brought carers' issues to the fore when they published the national strategy for carers. Previously, the role of carers had been under-recognised and undervalued. The health and social care analyst, Melanie Henwood, summed that up in 1998 when she chose the title "Ignored and Invisible?" for the report on her research into carers' experience of the NHS. That was why it was particularly important that, in their national strategy, the Government identified the NHS as the single most important first point of contact for carers.
The strategy identified some important roles for primary health care staff. First, they should identify patients who are carers and patients who have a carer; secondly, they should check carers' physical and emotional health wherever a suitable opportunity arises, and at least once a year; thirdly, they should inform carers routinely that they can ask for an assessment of their own needs; fourthly, they should ask patients who have carers whether they are happy for health information about them to be given to their carer; and fifthly, they should signpost carers to other sources of support such as support groups and the local carers' centre. That checklist for primary care was an important step forward, but, six years on, it is now time to look at the extent to which primary health care teams are following it.
It is clear that we should do that if we want to build on the national strategy, both to protect carers' health and enable them to continue caring. From 2001 to the start of this year, I worked as an independent consultant with colleagues on research into carers' needs and issues
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for the national charity, the Princess Royal Trust for Carers. I do not feel the need to declare an interest, because that work ceased when I became a Member of Parliament.
In 2002, I co-ordinated for the Princess Royal Trust for Carers the largest ever survey of carers in the UK. Three years on from the publication of the national strategy, that survey provided a snapshot of carers' needs and priorities. A second project, in 2003, focused more specifically on primary health care and the most effective ways to identify carers and get them using support services. Ministers with responsibility for social care, my right hon. Friend the Member for Redditch (Jacqui Smith) and later my hon. Friend the Member for South Thanet (Dr. Ladyman), spoke at the national launch of those reports. The reports from both projects, and a number of other surveys, have pointed to the fact that caring has an impact on the carer's health, particularly at the heavier levels of caring commitment.
More than two thirds of the carers responding to the 2003 survey I mentioned felt that their own health had been affected by caring. That was in line with national findings. Symptoms reported to the general household survey by those caring for more than 50 hours a week included loss of sleep, reported by half the respondents, and physical strain, reported by almost a quarter, while one third felt depressed. It is becoming accepted that caring has an impact on carers' health. The effects of caring can cover a range of conditions including back pain or injury caused by lifting and handling, stress and mental health problems, poor immune responses, and hypertension and the associated risk of coronary heart disease.
On mental health issues, it seems from a number of surveys and studies completed since the national strategy was published that carers at the heavier end of commitment, those living in the same household as the cared-for person and female carers are all at high risk of mental ill health. Further, a study from the United States of people giving care to patients with stroke and dementia found that their health was affected in ways that would accelerate the risk of age-related diseases. The study found that the stress that the carers experienced was prematurely ageing their immune systems. That is clearly a significant finding for carers.
Understanding carers' health problems and needs and identifying what forms of support could alleviate the stresses on carers are therefore key areas for further research by the NHS. Maintaining and improving carers' health is correct in principle, because they are patients in their own right. For the NHS and social care agencies it is also a cost-effective way of maintaining the essential support that the carers give to the cared-for. The health of groups of patients such as those suffering from diabetes or heart disease is made a priority in the NHS through specific targets and incentives. Heavily committed carers should also be a target group for support and health improvement.
The necessary first step in enabling new and more targeted work to take place with carers within a GP practice population is to step up the pace of the work on identifying carers. In the late 1990s that was seen as essential. The Government had issued national priorities guidance on it in 1998, asking GPs, primary
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health care teams and social services staff to identify carers by April 2000. However, that target date was deferred and no new date has been set. The good news is that the momentum of the work that started in the late 1990s carried on for a number of years, and much good practice has been developed. Now it is seen to be important that carers be identified in a more focused way. GPs and their teams see limited value in wholesale identification of carers, and often reject such an approach for workload reasons.
Current good practice suggests that it is worth identifying carers who would benefit from being referred to other agencies for support and assessment of their needs. Carers with the highest level of caring commitment are likely to be in greatest need of support, and also need to have their own health monitored more frequently. In a GP practice population of 2,000 there are likely to be some 200 carers, of whom about 40 are caring for more than 50 hours per week, so the task of identifying the most heavily-committed carers is manageable. Also, a wealth of good practice, protocols, guides and training is available on how to identify carers most effectively.
It was clear from the report of the research done in 2003, which I mentioned earlier, that the work being done by GPs and primary health care staff on identifying carers is patchy. Some GPs and their staff work on it enthusiastically while others say that they are too busy. That means that carers using the GP practices that do not do such work are denied access to the services and support that they could get if they were identified and referred by their GPs. It would help if this work by GPs were better recognised in GP contracts. In current contracts, out of a maximum of 1,050 points available for quality of service, having a protocol to identify and refer carers is worth only three points. That is not a significant incentive; a larger contractual element would now seem appropriate. Also, if the Government were to set a new target date by which primary care teams working with social services staff were to identify carers—perhaps starting with the most heavily committed carers—that would send out the message that the Government considered the task to be important. If GPs identified those carers, they could offer them a health check. Standard 6 of the national service framework for mental health explains that carers of a person on the care programme approach should have
"an assessment of their caring, physical and mental health needs, repeated on at least an annual basis".
A similar approach could be introduced for other heavily committed carers.
In Salford, the carers' centre is working with local GPs to identify and refer carers for support. Staff at the centre told me about a recent case that exemplifies the way in which a carer's health can improve when they receive the right support. The carer presented at the GP's practice suffering from stress and depression. The doctor prescribed anti-depressants and referred the carer for counselling. At the first counselling session, the counsellor asked whether the carer knew about the carers' centre and whether she had received an assessment of her needs, and the answers to both questions were negative. The counsellor referred the carer to the centre, which arranged a carer's assessment. It identified the need for respite care and help with
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personal care for the person cared for. With that counselling and extra support, the carer has already been able to reduce her use of anti-depressants. The primary care worker from the carers' centre contacted the GP's practice and found that it had no policy for identifying and referring carers. The example of that patient showed the practice how it could benefit from working with the centre. The staff have now received training in supporting carers, and the practice is making referrals to the centre. GPs and primary care teams would be helped greatly in the task of identifying carers if the Government had a publicity and awareness-raising campaign to encourage carers to identify themselves to their GP. Friday 2 December is carers' rights day, and that would be a good target date for such a campaign.
Finally, I want to talk about the idea of extending the concept behind the expert patients programme to create an expert carers programme. The expert patients programme has been one of the more innovative concepts in NHS thinking, and I urge the Minister to look at extending it to create an expert carers programme. The NHS, social services and others rely on carers' knowledge and experience in managing many illnesses and chronic conditions. From the parents caring for a teenager with a chronic eating disorder to the spouse, son or daughter caring for a person suffering from Alzheimer's, we can see that there is a role in health care for the expert carer. The Institute of Psychiatry at King's College is interested in developing an initiative on expert carers to help those with anorexia nervosa and other eating disorders. The self-management scheme for carers at the Long-term Medical Conditions Alliance could also provide a starting point for an expert carers programme.
The suggestions that I have made to improve the support that primary health care gives to carers include more research by the NHS into the impact of caring on the carer's own health, particularly at the heavier end of caring commitment; ensuring that the work of identifying carers in a GP practice population attracts a larger contractual element in GP contracts; setting a new target date for identifying the most heavily committed carers; a Government-run publicity and awareness-raising campaign asking carers to identify themselves to their GPs; and developing an expert carers programme. I look forward to the Minister's response.
1.43 pm
The Parliamentary Under-Secretary of State for Health (Mr. Liam Byrne) : I congratulate my hon. Friend the Member for Worsley (Barbara Keeley) on securing this debate on carers and primary health care. I also thank her for her congratulations on my appointment. As she will probably know, I have not replied to many Adjournment debates yet, but I can say in all honesty that of all the contributions to which I have replied, hers has been by far the best. She has already distinguished herself in this Parliament as a first-class representative of her constituency and a voice on matters of national concern. She introduced herself very modestly, but she is already one of the leading authorities on this issue in the House. That is why her remarks were so welcome.
I shall preface my remarks with a few words about the Government's national approach to this issue. The 2001 census showed that there are 5.2 million carers in
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England and Wales. That is one in 10 of the population and not far short of the population of London. Of those 5.2 million people, 68 per cent. provide care for up to 19 hours a week. That is 3.5 million people, which is more than the population of Wales. About 11 per cent. provide care for between 20 and 49 hours a week, which is about three to seven hours a day every day, and an incredible 21 per cent.—one in five or just over 1 million carers—provide care for 50 or more hours a week, which is more than the working time directive maximum of 48 hours. More than 225,000 people providing 50 or more hours of unpaid care per week state that they are not in good health themselves. As my hon. Friend said, if anyone is providing care at that level, it can and does have an impact on their health. More than half of the people providing that care are themselves over the age of 55.
The 2001 census tells us that, at the other end of the age spectrum, there are around 150,000 young carers—that is 17 years old or younger—in England and Wales. Some 13,000 of those care for a disabled person, usually a parent, brother or sister, for between 20 and 49 hours a week. Almost 11,000 care for more than 50 hours a week, which is more than double the time that they spend in the classroom. As my hon. Friend described far more eloquently than I could, caring can have serious negative consequences for the education and social lives of those young people, as well as their emotional and physical health.
The Government are committed to supporting carers. We were the first Administration to recognise the vital contribution that they make to society, which we made clear in publishing our carers strategy in 1999. We have also demonstrated our commitment to carers by supporting two private Member's Bills that have resulted in more rights for carers. First, the Carers and Disabled Children Act 2000 involves a new right for carers to an assessment of their own needs and circumstances. It also gives local councils mandatory duties to support carers by providing services to carers directly and in the provision of short breaks and by providing direct payments for carers' services.
The second Act, the Carers (Equal Opportunities) Act 2004, came into force on 1 April 2005. It makes three main changes to the existing law on carers services. Section 1 places a duty on councils to inform carers, in certain circumstances, of their right to an assessment of their needs; section 2 says that when assessing a carer's needs, councils must take into account whether the carer works or wishes to work and/or undertakes or wishes to undertake education, training or leisure activities; and section 3 facilitates co-operation between authorities in relation to the provision of services that are relevant to carers.
We have acknowledged the research that tells us that carers need a break from caring to help them carry on in the longer term. To support that, we introduced the carers grant in 1999 to support councils in providing breaks and services for carers in England. The grant has increased each year and has provided an extra £450 million over the past six years, and in 2005–06 it is worth £185 million. I am glad to say that, in the last local government finance settlement, we confirmed our commitment to continue the carers grant until the end of the 2007–08 financial year.
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We recognise that a great deal more is still to be done, and I have set out three themes to guide my work this year. First, we need to give everybody a flying start in the world. For carers, that means that we need to find ways to support young carers and parent carers of disabled children more effectively. Secondly, we need to deliver independent living. That means that we need to be able to offer carers more choice about how and when they care. Thirdly, I am determined that we deliver dignity for life. That means that we must stop treating carers as amateurs: they are partners with the social services work force even though they are unpaid. They are also involved in the close family or personal relationships that underpin the caring relationship and, as with any relationship, deserve respect, privacy and freedom from unnecessary intrusion.
Up to now, carer influence on the development of health services has largely been about including them in the decision-making process when determining the services for the person for whom they are caring. However, we need to seek their views on the help that they need in their caring role. Their views should be just as important as the views of patients and staff in helping us to draw up the blueprint for everyday support for people using local health and care services outside hospital. It is vital that councils can engage at a planning level with their partners in health and social care, because that means that at a strategic level social services will have a lever to influence the priorities of their partners in health and other council departments.
My hon. Friend mentioned the good practice in Salford. I was delighted to hear her report of it. It is exactly the sort of thing that we should encourage. This emphasis on cross-authority co-operation was reinforced by the supporting carers theme in round 6 of the beacon council scheme, ensuring that the best councils have the opportunity to share their ideas and showing just how innovative services for carers can be through working across boundaries. We had already recognised that the quality of assessment and services for carers in the NHS are variable. We have taken steps to develop standards and indicators to ensure that the primary care needs of carers are recognised. Where it has been possible, we have promoted the idea of local primary care support for carers.
But we cannot stop there. More needs to be done to support carers who are invaluable but often undervalued. That is why we are exploring other ways in which primary care needs of carers can be improved, focusing specifically on the carer as well as the person being cared for. We have started that job. My hon. Friend mentioned that as part of the general medical services contract we have developed the quality and outcomes framework, which is a voluntary system of financial incentives. It is about rewarding contractors for good practice through participation in an annual quality improvement cycle.
The original version of the QOF guidance and evidence base, which was published with the contract agreement in 2003, has been revised by the NHS Confederation and the British Medical Association. In addition, since the 2004 Act came into force, a number of core and developmental standards relating to carers have been published through the new performance
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framework for the NHS and social care. A couple of standards are particularly important and worth spelling out.
Core standard 22 states that health care organisations promote, protect and demonstrably improve the health of the community served, and narrow health inequalities by co-operating with each other and with local authorities and other organisations and making appropriate and effective contribution to local partnership arrangements including local strategic partnerships.
Several other standards are pertinent to support for carers. Core standard 13 says that health care organisations must have systems in place to ensure that staff treat patients, their relatives and carers with dignity and respect. Core standard 14 states that health care organisations should have systems in place to ensure that patients, their relatives and carers have suitable information about, and clear access to, procedures to register formal complaints and feedback on the quality of services, are not discriminated against when complaints are made, and are assured that organisations act appropriately on any concerns and, where appropriate, make changes.
Barbara Keeley : On the quality and outcomes framework guidance, in my experience the people working in primary care projects in different parts of the country ran into difficulties with the definition of carer. For instance, in some areas PCTs did not accept that people caring for those with alcohol or drugs problems were carers. Talking of people being heavily committed or at the sharp end of things, young carers are often involved in the care of people with mental health and drugs problems. When these issues are clarified, it is important that everyone accepts a national definition of carer that includes those conditions.
The inclusion of carers in the core standards is key. It is a step change that some PCTs and other authorities have to make in recognising that this is a key constituency and in thinking it through properly. In some ways it is the overall links to PCTs and the big message that needs to be got across, rather than the detail. We are moving to a situation where the detail of everything that is produced includes carers. Provision is still patchy across the country. This constituency is being ignored in some places. Many organisations and people concerned about carers do not know how to get them further up the agenda. It is almost as if we have to do something big to show that we really mean this.
Mr. Byrne : I am grateful to my hon. Friend for that intervention. Having started the job, we must finish it. There is one opportunity to do that on which I might elicit her support. Having announced at the end of June that we will set out a vision for family health services fit for the 21st century, we are now going into a period of consultation, which will help us to draw up that White Paper. Our desire is to ensure that health care outside hospitals is delivered to high standards and in a way that people want. That must take into account the needs of carers. My hon. Friend's point about the need for a national definition is one that can be usefully considered as part of that consultation. It is especially true for people with long-term conditions who are being cared for in the community, where carers often play important roles.
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We have made it clear that we want as many people as possible to contribute to that discussion because our aim is to listen to and learn from the public and people who come across such issues in their daily lives. To undertake that consultation, we are setting up an extensive public engagement programme, which will start in the autumn. It will include national, regional and local events. I will write to the team in the Department that is working on the project to ensure that the points that my hon. Friend made are taken into account when that consultation process is being designed, rather than when it is under way.
I turn quickly to a couple of the other points that my hon. Friend made. She made a point about the systems being used in GP surgeries to track the number of carers. That was considered. We decided that it was hard to specify one direction because of the diversity in systems and practices in GP practices. Most importantly, we are moving from processes to outcomes—a focus on all patients. That must include carers. As my hon. Friend said, they have better outcomes.
I also take my hon. Friend's point about how only three points out of 1,050 in the GMS contracts relate to carers. I stress that carers are individuals in their own right, so other parts of the contract will apply to them in addition to the carer-specific issues. Although the quality and outcomes framework cannot be altered locally, it is worth stressing that PCTs can commission extra services from any or all of the GP practices if they choose. Those services are called locally enhanced services. They are negotiated locally and funded from the PCT's main allocation. They are outside national negotiations and agreements, and the only prescription is that they are additional services. That is possibly another area for us to explore.
My hon. Friend also made the point about setting a date for a campaign to raise awareness among GPs about carers needs. Although I cannot commit to that specifically, I shall write to the Department of Health
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team working on the White Paper consultation. I may also write to the carers organisations with which I work in my portfolio to alert them to the debate and to flag up the point that, as the White Paper consultation gets under way, they may need to think about these issues.
My hon. Friend mentioned a useful point about expert patients. I have met some of them, and their stories are extraordinarily powerful. We must consider how such programmes can be introduced more widely.
I should underline the importance of the White Paper consultation. It is vital that the consultation is broad, and that experts such as my hon. Friend have the chance to input into it. I am reminded of the time when the mother of a very disabled man in his 20s spoke at an event that I was speaking at in Birmingham. She pointed out that carers consultation events often start at 10 am, finish at 4 pm, and have no facility for the cared-for person to attend, no paid expenses, no close parking and no messaging service. That will not be helpful if we are genuinely to take into account the views of carers. I am determined that we shall not make that mistake with the White Paper consultation.
Barbara Keeley : I should value a note about that matter, and I am sure that the carers organisations will be happy to help. Sometimes carers want to get away from the cared-for person for the day. Sometimes it suits people to come with the cared-for person. Sometimes people find it easier to talk about their situation if the cared-for person is not present, and it is then a question of respite care, and of help with it.
Mr. Byrne : My hon. Friend underlines the need to get the White Paper consultation right. I hope that she will get involved in the consultation in September, and that she will encourage others, particularly carers, to do so as well.
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