Health Bill

I begin by declaring my interests in all aspects of palliative care. I am most grateful to the noble Earl, Lord Howe, for his introduction of these amendments and I shall speak to all three in the group. The noble Earl is absolutely right to point out that the underfunding of children’s palliative care services is indeed a scandal. There is an enormous shortage of expertise available to general paediatric teams from those who specialise in paediatric palliative care. Indeed, currently there are only four specialists in paediatric palliative medicine in the country. One of those, I am proud to say, is in my own university, but it was a long and hard battle to get that post set up. Sadly, commissioners do not have palliative care implementation plans. We know that many PCTs and local health boards do not have implementation plans in place and the first stage towards driving up standards must be to highlight the inequities. In 2004, the House of Commons Health Committee published a report on gross inequities in the provision of specialist palliative care services by diagnosis, by place of domicile and so on. Indeed, it is well known among clinicians in the field that palliative care expertise is often required from the time of diagnosis. This is not simply a problem that is confined to the last days or hours of life; that expertise needs to be available earlier on. Also in 2004 the National Institute for Health and Clinical Excellence produced guidance on supportive and palliative care for adults with cancer. That guidance is equally applicable to those with life-threatening diagnoses other than cancer. However, there is a real danger that the guidance is beginning to gather dust because it has not been rolled out and the levers are not in place. The National Council for Palliative Care is particularly supportive of Amendment No. 96A, as are Marie Curie Cancer Care and Sue Ryder Care. The palliative care manifesto produced by the council asked specifically for the introduction of monitoring of the care of the dying as a key element of performance management for NHS organisations at board level, and to establish on a continuing basis a national training programme in palliative care for all health and social care professionals who look after patients with advanced, progressive illnesses. It should be noted that that is not just for the last days or hours of life; the involvement is necessary for longer than that. Another problem is that there are some areas of extremely good practice, but because there is no annual reporting, they are not well disseminated to other commissioners. I should like to take a moment to highlight one particular example from Marie Curie Cancer Care. As I have said, I declare an interest in that I have a role with that organisation. Marie Curie Cancer Care has set up a palliative care co-ordination centre in Lincolnshire for patients in the community. It estimates that for every patient the co-ordination centre supports, it frees up about four hours of district nursing time. However, the main benefit is seen with its 24-hour, seven days a week palliative care rapid response service, which it has just established. In April alone, the rapid response team provided 90 episodes of care that would normally have required a hospital admission. Marie Curie believes that in 88 cases this was avoided, so only two cases out of the 90 ended up eventually in hospital. This provided an estimated saving to the acute trust of over £100,000 in April alone, which suggests that the rapid response team cost could be recouped within three months. Marie Curie Cancer Care is investing over £9 million in three years in three existing Delivering Choice programmes in Lincolnshire, Tayside and Leeds, but it is keen to share the learning and welcomes interest from commissioners in other areas who want to learn more. This is exactly the sort of project that should be reported annually, showing progress and cost savings. That is the background to Amendment No. 96A. In Amendment No. 82A, there is a call to undertake an assessment on the nature and extent of palliative care services. A baseline assessment has already been done for the Government by the National Council for Hospice and Specialist Palliative Care Services, under the guidance of Peter Tebbit. That can simply been built on; all the baseline data have already been collected, so the main work is already done. I turn briefly to Amendment No. 101A, which stands in my name. We know from the reports that come through that bad care at the end of life occurs particularly in isolated geriatric units, psychogeriatric units and in places which are particularly distant from specialist palliative care services. But it is precisely in those areas that decisions are often taken that cardiopulmonary resuscitation would prove futile and should not be embarked on. The idea behind the amendment is to ensure that whenever that decision is taken on a patient, there is attention to their needs in the last days and hours of life, using the tools that are already in place, such as the Liverpool Care Pathway or, for patients in the community, the gold standards framework. They have already been evaluated and we know that they drive up standards of care. It would also mean that in each service there would be a need to identify one of the generic members of the team, who would then up-skill their palliative care knowledge, link in to the specialist palliative care services and take responsibility for leading and updating the rest of the team on an ongoing basis. That person would have a responsibility to meet with the specialist palliative care team from time to time—it would not have to be terribly often—to make sure that they really were up-skilled and keeping up to date. It would be a way of driving up services. The other area in which these decisions are sometimes taken is Accident and Emergency, when patients are brought in with life-threatening injuries or illnesses and it is clear that active resuscitation would not be appropriate. Again, the Liverpool Care Pathway can easily be implemented to ensure that the relatives are informed and drugs that may be needed to keep someone comfortable are written up. But another extension could be added. When a person is in an acute situation and dying, and the decision has been taken that attempting further CPR would not be appropriate, the trigger question could be asked whether the organs should be offered for transplant. We know that over 6,000 patients are currently waiting for organs and that the supply of organs will never meet their needs. More than 5,000 of those patients will die of their disease without ever receiving a transplant. Having a question on that pathway as a trigger would raise the profile among staff and empower them to at least have the courage to ask the question. We know very well that often the question should be asked but the staff are timid, frightened and not sure how to do so. The pathway could even include some suggested wording or phrasing to help staff to make that approach. That would help to meet another need. The bereaved, especially parents, often state that they regret that they were not approached about transplant at the time of the crisis in accident and emergency, or wherever. They did not think about it or know what to do and no one asked them about it, and they regret it later. Again, that may avoid a fall-out in bereavement. Having a generic worker in each service designated within the framework of the Bill to have responsibility should avoid some of the morbidity in bereavement that we see and which currently occupies a lot of time in primary care.