Health Bill [HL]

My Lords, I always have two main interests in any health Bill in your Lordships’ House. My first interest is as a long-time and long-term patient of the NHS; I owe my life to it and am grateful to it every day. My other main interest is as someone who has spent a great deal of her working life trying to get the NHS and other care services to be more focused on patients and users, and in that regard your Lordships will not be surprised to know that I welcome this Bill very much. However, I have several other specific interests to declare in relation to issues that I want to raise today. I am chair of the Council for Healthcare Regulatory Excellence, chair of the Specialised Healthcare Alliance and vice-president of Carers UK. From the point of view of patients, the constitution is an extremely welcome development, which will have far-reaching effects by putting privacy, dignity and cleanliness at the heart of care and giving patients a better understanding than ever before of their rights and responsibilities. Because it is based on existing legislation, it may be vulnerable to change under different Administrations. Consistency is of the utmost importance from the point of view of patients, so we shall have to ensure that the constitution is an enduring document. The commitment to review the handbook every three years to take account of policy developments is therefore very important. As we introduce this important new development, the Government will have to ensure that the principles outlined in the constitution fit broader NHS policies. There is a considerable overlap between the goals of the constitution and those of the regulation of health professionals. It is important to ensure that the rights and responsibilities of NHS staff, as laid out in the constitution, work in harmony with and not in opposition to the standards of the regulators of the health professions. During the consultation phase last year, the Council for Healthcare Regulatory Excellence expressed concern that there were potential inconsistencies between standards and the guidance issued by professional regulators to their registrants and the responsibilities described in the constitution towards confidentiality and access to records. The council is pleased that these have been addressed in the final document, but we must ensure that the professional regulators and the CHRE are involved in subsequent revisions of the handbook and the constitution. The status of the handbook is also of concern to the Specialised Healthcare Alliance. There is, I am pleased to say, a paragraph on page 15 about the existence of specialised services, but it seems to limit the alliance’s concern to a small number of people who are suffering from rare conditions. As specialised services account for 10 per cent of NHS expenditure and many hundreds of thousands of patients who are often in the most extreme need, as the noble Baroness, Lady Thomas, has reminded us, this is inadequate recognition and needs to be amended. So far as patients are concerned, the Bill requires the Secretary of State to publish a report every three years on how the constitution has affected patients, staff and members of the public. As others have said, however, it does not provide any details about how this will be assessed or how the effectiveness of the constitution will be evaluated. I hope that, as the Bill proceeds, we will receive more details about this. We also need to work a little more on patient choice. There is a lot of emphasis in the Bill on patients’ duties, but patient choice is not given sufficient prominence. The Bill also requires that patients and the public are consulted during each review of the constitution, but it does not make that requirement for the reviews of the handbook. I am not sure that the public will be able to understand the meaning of the rights and pledges in the constitution without the aid of the handbook, so consideration will also have to be given to public/patient involvement in regular reviews of the handbook. I will make specific suggestions about consultations in a moment. I draw your Lordships’ attention, as other noble Lords have done, to a serious omission in the constitution. Given the increasing overlap between health and social care and the fact that most patients do not know where one ends and the other begins—why should they?—it is an anomaly that there is not one mention of social care in the constitution and no equivalent constitution for social care. If the Government are committed to providing a seamless service, we will have to address this omission. The constitution sets out a number of responsibilities that patients and carers have towards the NHS. Carers—there are 6 million of them, as I am glad to say other noble Lords have reminded us—argue that they are going above and beyond their responsibilities, as set out in the constitution, by already providing more than £87 billion of care, which is the same as the value of the NHS when that was calculated. The constitution states that it is a patient’s responsibility to attend appointments and screenings and to register with GP practices. For some carers to be able to do this, social care needs to work proactively. Carers UK has provided me with several examples of carers having been unable to attend routine screenings, register with GP practices or attend follow-up appointments for cancer because they have been unable to secure the right social care services to do so. One woman has been unable to attend a check-up since she had bowel cancer eight years ago, because the screening was likely to leave her incapacitated for several days and she could not get care for her husband to cover that period. Health bodies must be encouraged to work proactively with local authorities to ensure that carers can fulfil what the constitution sees as their responsibilities towards their own health and well-being. A further concern is that, although Clause 3 requires the Secretary of State to consult patients, staff, service providers, members of the public and, "““such other persons as the Secretary of State considers appropriate””," in the regular revision of the constitution and handbook, there is no specific mention of consulting carers. Carers must be recognised in the Bill as key stakeholders in the provision of healthcare services, and health bodies must be given similar duties to consult, involve and generally have regard to carers alongside patients, users and the public. Many carers are also patients and will therefore have rights in this regard, but they interact with the NHS often solely as carers and must be specifically consulted as such rather than under the catch-all term ““the public””. They often play a vital role in mediation, advocacy and negotiation in helping patients to access services, and their lives are influenced considerably by the quality and accessibility of services. The constitution should reflect the reality that patients and service users exist not in a vacuum but within families, many of which provide high levels of care. I am pleased to say that health and social care policy is finally recognising that carers should be seen as partners in care. We should not let them down by denying this special and important recognition. I turn finally and briefly to personal health budgets and direct payments. These will enable patients to purchase their own services in the same way as the model used in social care for some time, which could make a real difference to people who receive continuing care and those with complex health and social care needs. However, several issues need to be resolved, such as how personal health budgets that are used to buy care from unregulated providers will be policed. If that can be done, will some of the conflicts to which I referred earlier in relation to regulation also arise here? In particular, it is essential that we heed the lessons learnt in the social care field so far as direct payments are concerned. I hope that these will be apparent from a full evaluation of the pilots, but we can do no better than listen to the noble Baroness, Lady Campbell, on this issue.