Health Bill

I congratulate Members of the Committee on ensuring that we have had a good debate on palliative care during the course of the Bill. I pay tribute to the persistence of the noble Earl, Lord Howe, on the subject of hospices—particularly children’s hospices—and his willingness to keep plugging away. I also acknowledge and recognise the dedication of the noble Baroness, Lady Finlay, to the cause of those patients in need of palliative care and her contribution in that field. Again, I pay tribute to her persistence in bringing these issues before the House. Can I be mildly boring by talking about the amendments, before coming to some of the questions that a number of Members of the Committee have raised? First, I shall deal with Amendment No. 96A, but I shall come to the amendment moved by the noble Earl. Amendment No. 96A states:"““Each Primary Care Trust shall publish an annual report on their progress in implementing their local plans for community and in-patient palliative care services, including specialist palliative care services””." The noble Baroness, Lady Barker, talked about being boring on a particular issue. I must also be boring on the issue of primary care trusts and their responsibilities. They are the locally accountable body within the NHS for commissioning and funding of services for their resident population, including palliative care. That is one of their functions. They receive funding direct from the department, bypassing the strategic health authorities, so they are the accountable body for ensuring that their local population has the health services that it needs. They are responsible for ensuring that those services, including palliative and specialist palliative care, are provided with the resources made available. Schedule 5A of the National Health Service Act 1977, as amended, states:"““As soon as practicable after the end of each financial year every Primary Care Trust shall prepare a report on the trust’s activities during that year and shall send a copy of the report to," each strategic health authority whose area includes any part of the trust’s area,"““and to the Secretary of State””." It is worth mentioning that the Secretary of State also has the power in that schedule to require the PCT to prepare and send such other reports or information as she requires, in case the report sent annually did not contain the necessary information. The requirement of the amendment is therefore already covered in existing legislation. In addition, under the planning and priorities framework, the NHS is required to set out action plans to achieve compliance with recommendations in guidance published by NICE in March 2004. That guidance, entitled Improving Supportive and Palliative Care for Adults with Cancer, provides evidence-based recommendations on those service models most likely to lead to high-quality care and services, which help patients and carers cope with cancer and its treatment through the cancer journey. The guidance applies to all cancer patients and their carers and covers aspects such as co-ordination of care, communications, information, psychological support services, specialist palliative care, general palliative care and social support services. I could go on. Although oriented towards cancer, many of the principles and recommendations in the guidance apply equally to other long-term conditions. As part of that planning process, cancer networks have provided a description of current and future organisation of services for the delivery of NICE guidance, including milestones, broadly costed investment milestones and an assessment of the management of risk. Those agreed action plans and progress in implementing them are being monitored by strategic health authorities, acting on behalf of the Secretary of State. Progress is also being monitored through the cancer action team and through the cancer peer review process. I spell that out because there is already an accountability process in place in this area. It is not that we have neglected it; it is possibly that some noble Lords who are real enthusiasts for palliative care do not see progress as soon as they would like; but there is a good accountable management process in place to ensure that NICE guidance is being pursued in this area and that progress is being made. I am sure that we all want progress to be quicker, but, as I said, we must all understand that PCTs have the responsibility to balance the needs of their local communities across a range of services with the resources available. I turn briefly to Amendment No. 82A, moved by the noble Earl. It calls for the Government to carry out an assessment of the state of palliative care services in this country and to present a report to Parliament after 12 months. As I said, we have a process to take PCTs forward. At the national level, in recent years we have produced annual reports on progress in implementing the NHS Cancer Plan 2000 and the Government are also able to assess and monitor progress in the development of palliative care services through the reports we receive via the various advisory groups that we have established, including the National Partnership Group for Palliative Care. A number of noble Lords also mentioned the Government’s recently published White Paper, Our health, our care, our say, in which we set out a clear strategy for end-of-life care; and the noble Lord, Lord Carter, quoted accurately some of the provisions in the White Paper in which we are trying to take that forward. Our manifesto commitment on palliative care will be delivered through the programme of action set out in the White Paper. We are currently working with stakeholders to take this forward and the issue of reporting on progress in implementing the strategy is an aspect that we will be considering. The noble Earl drew attention to the amendment’s reference to palliative care services to children. Children’s palliative care is different to that for adults, which tends to focus on end-of-life care, mostly in relation to cancer. In contrast, palliative care for children and young people is for life-threatening or life-limiting conditions, and care may be need from birth through to death. It needs to be provided in a variety of settings—home, hospital, hospice or school—to enable the child to live as normal a life as possible for as long as possible. We published the National Service Framework for Children, Young People and Maternity Services 20 months ago. It set standards for health, social services and education to help achieve the five key outcomes in Every Child Matters. They are underpinned by the Children Act 2004. Within the children’s NSF, there is a dedicated standard for services for disabled children and young people and those with complex health needs, including palliative care. Local authorities, PCTs and NHS trusts are required to ensure that palliative care services provide high-quality, sensitive support to children, young persons and their families and are sensitive to their cultural and spiritual needs. This NSF is being rolled out and will be fully implemented, but it will take time. There is a long way to travel. We are on the right path. The Healthcare Commission is responsible for reviewing progress on implementation, but we have also put some measures into place. We want PCTs to start to implement the standards for services for disabled children who require palliative care. Again, the White Paper, Our health, our care, our say states that in relation to disabled children, children with complex health needs and those in need of palliative care, PCTs need to ensure that the right model of service is developed by undertaking a review to audit capacity, including children’s community nursing and delivery of integrated pathways against NSF standards, agreeing service models, funding and commissioning arrangements with their SHA. We take this matter very seriously and have put in place accountability and arrangements with PCTs to take forward this area. I hope that that has provided the Committee with some reassurance. Turning to some of the specific matters raised with me: regarding my noble friend Lord Carter’s suggestion that money should be used to fund palliative care and his question as to what happens if the consultants are not appointed; again, it is down to the PCTs to make judgments about what should be done with money that cannot be spent on filling particular posts. The PCTs make such judgments as part of managing their resources over time. The fact that a need has been established usually means that a post is filled at some time, but it may be that the PCT may temporarily use some of that money for other purposes—but the need for the post to be established would mean that that would be taken forward. The noble Baroness, Lady Finlay, raised issues in respect of Marie Curie pilots. My honourable friend, Rosie Winterton, the Minister responsible for this area, is closely engaged with Marie Curie and has worked closely with that organisation in setting the strategic direction mentioned in the White Paper. She will be pleased to launch the next pilot in Leeds on Thursday this week—so we are very much engaged with Marie Curie in this area. I cannot give a specific answer to the noble Baroness, Lady Barker, on Agenda for Change; however, it is a job evaluation process that tries to provide a fair result for similar jobs and I am sure that it has been put in place in the appropriate way. If the noble Baroness has a particular concern, I would be happy to look into it. The noble Baroness is persistent in pursuing me as to whether the new PCTs will honour commitments given by others. I can give her a clear and unequivocal answer: it will be for the new PCTs, when they come into operation on 1 October 2006, to consider what they do with all changes that have not been implemented. Under their statutory responsibilities, it will be for them to decide how to move forward on matters that were not implemented by their predecessor bodies. That is not to say that the new PCTs will not implement them, but in law they will be responsible in their communities for taking forward certain issues. The noble Baroness, Lady Finlay, raised the matter of our manifesto pledge. We will be delivering that through our commitments in the White Paper, particularly through end-of-life networks, which a number of noble Lords raised. I draw attention to the passage in the White Paper on the importance of getting all professionals to be skilled as far as possible in end-of-life care, including implementing the good example of the Liverpool Care Pathway for the dying, which is a tool to enable professionals provide high-quality symptom control and support for families during the last days of life. That is currently being practised in 60 per cent of all acute trusts. I have dealt as best I can with the subject of children’s hospices. The noble Earl, Lord Howe, raised the question of payment by results. The funding for that is currently under discussion. The tariff is applied at present to the NHS. We are engaged with the National Partnership Group for Palliative Care in taking forward issues that affect it under the tariff. I have nothing more to say on that issue at the moment. I cannot reply in detail to many of the other points raised by noble Lords, but I will study Hansard carefully and I will write to them about points that I have not covered. I turn briefly to Amendment No. 101A in this group. It is a general principle of law and medical practice that everyone has the right to consent to or refuse treatment, and healthcare professionals should discuss possible treatment options with patients and should, where the condition makes it appropriate, include how they would like to be treated if or when they lose capacity. An adult with capacity is able to refuse any form of medical treatment, even when that might result in their death. They can also make an advance decision, setting out what they want to happen to them if they lose capacity in future. Sometimes that will mean that medical treatment that is not longer beneficial to the patient should be withdrawn. Such decisions will depend on the specific circumstances of the person involved, an assessment of the person’s prospects of recovery, the pain they are suffering and any burdens associated with available treatments. In all cases, however, suitable medical care should be provided to ensure that the comfort and dignity of the patient is maintained. Those general points of principle are, of course, relevant to decisions about cardio-pulmonary resuscitation, including when resuscitation would not be appropriate. Those principles apply also to decisions about the involvement of palliative care teams. Such decisions will be based on the expert professional knowledge of the attending physician or clinical team, and will, whenever possible, have involved the patient and the family. The Government’s view is that end-of-life care needs to be provided by those with expertise in the particular disease in question. Often specialist palliative care consultants may not have specific knowledge of the disease process, and to place a duty to refer a patient to such a specialist, as the amendment provides, could sever or fragment this important patient/professional relationship at a most critical time. Of course, there will regularly be occasions when it is entirely appropriate to engage the expertise of the specialist in palliative care. Indeed, it will often be important to do so, even when no formal decision not to resuscitate a patient has been taken. But it must be down to the clinical judgment of the attending physician about when and to whom a patient is referred. Although patients who require the expertise of a specialist in palliative care should receive it, it is our view that, should the proposed amendment be enshrined in legislation, the available capacity of specialist palliative care consultants could not meet the demand of all ““do not resuscitate”” referrals. Indeed, it would not be an appropriate use of their expertise. I do not want to go into any detail about the drafting problems, but I will write to the noble Baroness to point out, as gently as possible, that there are some shortcomings in the framing of this amendment. I will not detain the Committee by going into those. I have set out the main reason why this amendment is inappropriate. I have done the best I can, without detaining the Committee longer, to try respond to the amendments. We do not think that Amendment Nos. 96A or 82A are necessary, for the reasons I have set out in terms of the processes that are already in place. I have explained why we do not think that Amendment No. 101A is professionally appropriate.