Care Bill [HL]

Debate between Baroness Wheeler and Baroness Emerton

Monday 29th July 2013 Lords Chamber

[Baroness Emerton]

My Lords, I support the amendment proposed by the noble Lord, Lord Warner, and agree with what all the other speakers have said. I remind noble Lords that when care pathways were introduced by the previous Government end-of-life care was not a pathway. The noble Lord, Lord Darzi, listened to a group of hospice workers. They said that they very rarely saw a death in a surgical ward and that they believed that we should look at a care pathway for end of life. What has been said today indicates that we need to concentrate on bringing together health and social care, bringing together social workers and health staff and, above all, seeking the choice of patients. As has already been said, most patients wish to live in their own surroundings and the end-of-life care pathway would take care of not only the person whose life is ending but also the relatives and family around them. I suggest that we think about how we progress the care pathway for end of life.

[Baroness Wheeler]

My Lords, we on these Benches are grateful to my noble friend Lord Warner and the noble Lord, Lord Patel, for bringing forward these amendments which ensure that end-of-life care is discussed in the context of the Bill. The Government have confirmed to the Joint Committee that primary legislation is not required for the introduction of the proposed new palliative care funding system or free end-of-life care once the Bill is passed. It is right to seek up to date information on the progress of the end-of-life care pilots and the proposed timescale for the publication of the regulations and consultation, if the April 2015 deadline for any new systems is to be met.

The amendment of the noble Lord, Lord Patel, endorses the Joint Committee recommendation that assessment of the need for the care and support of an adult who is terminally ill should be treated as urgent by the local authority. We fully support that. As Marie Curie Cancer support says, people get stuck in hospital at the end of life because the system cannot move quickly enough to get a care package for alternative care in place. It is established good practice in some authorities to fast track assessment of people not covered by NHS continuing care. It is a very fundamental requirement for people who are terminally ill and should be a duty reinforced in the Bill.

There is also a strong argument for joining up access to social care and support with the DS1500 system for quick accessing of welfare benefits such as DLA, although it is recognised that some of the degenerative diseases such as motor neurone disease may not be easily dealt with in this way. Will the Minister advise the House of the Government’s view on this, and what work is being undertaken to ensure that benefits and the care and support system work in a more integrated way for terminally ill patients? It is now six years on from the introduction of the 2008 End of Life Care Strategy to help people have the end-of-life care and support they need, in the words of the Nuffield Trust,

“beyond the gates of the acute hospital setting”.

The strategy has made a vital contribution to increasing the profile within the NHS and social care of end-of-life care through such excellent programmes as the NHS End of Life Care, the Marie Curie Delivering Choice Programme and the 2009 Dying Matters campaign to tackle the taboo on discussing death and dying. However, as my noble friend has shown, progress on providing real choice for people to die in the place they want to, whether that is in their home, at a hospice, nursing home or in hospital, if that is where they can receive the best palliative and nursing care appropriate for their condition or personal circumstances, has been frustrating and disappointing.

The current main focus of palliative and end-of-life care is still on cancer patients and hospices, but even then, Macmillan Cancer Support research shows that 91% of cancer patients in England who die in hospital wanted to die elsewhere, with 65% wanting to die in their own homes. Only 29% of people with cancer are able to be at home when they die. The amendment of my noble friend Lord Warner seeks to specify in the Bill that regulations may include the right for an NHS patient to die in the place they regard as home or their normal residence. As he readily acknowledges, this can be achieved only if end-of-life care is integrated across the NHS, local councils and hospices, and if it is properly funded. His case for an integrated service for free end-of-life care for terminally ill people who are likely to die within six months is a convincing one.

Macmillan’s research among health and social care professionals shows that 97% identify the lack of financial integration between the services as a key barrier to people receiving the care they need at the end of life. As the noble Baroness, Lady Jolly, reminded us, the Nuffield’s and other research projects point strongly to the cost-effectiveness and potential savings that could be achieved with greater access to social care and reduced hospital admissions at the end of life. The Nuffield research also found that the use of social care currently varies between local authorities and health conditions—for example, people with dementia, falls and stroke use considerably more social care in community settings than those with cancer, probably because that is where they are already being cared for before terminal illness has been diagnosed. Individuals with the highest social care costs tend to have lower average hospital costs.

We fully recognise how crucial the seven adult palliative care funding pilots are to mapping and understanding current patterns and resource use across health and social care at end of life, and to collecting the vital data from which the costs of an integrated end-of-life care system can be properly assessed. These data span across care provided by the NHS, voluntary and private sector in both acute and community settings. The final data analysis report for the adult pilots and the consortium pilot for children’s palliative care services is due in June 2014, and the Government are committed to introduce a new per patient funding system for palliative care by April 2015. Can the Minister update the House on the progress being made under the pilots, the emerging key themes and whether the timescale has been impacted by the recent transfer of responsibility to NHS England? I understand that there is a problem with progress and that the pilots have only recently been provided with guidance on social care data collection—for example, as regards where data are underdeveloped and will probably take longest to collect. Is the Minister confident that the timescale for pilot reports, evaluation, policy decision and consultation can be met in time for implementation and that the Government will make a decision on free end-of-life care by the end of this Parliament?

Finally, two further issues need to be added to the debate. First, my noble friend Lady Pitkeathley reminded us of the recent Carers UK Carers Week survey which shows that much more support is needed for carers to help them plan for the end-of-life care of the person for whom they are caring. Many do not know how to plan for the death of a loved one and how to look ahead to life when caring ends in terms of returning to or taking up work, making social contacts and managing financially. My noble friend was right to underline how crucial it is to get this support right.

Secondly, it is as well to remember the findings of last month’s report from Public Health England and Marie Curie Cancer Care on palliative and end-of-life care for black, Asian and minority groups in the UK. It is a timely reminder that, with black, Asian and BME groups aged 65 and over set to treble in the next 25 years, there is urgent need to address the reasons for their low levels of use of palliative and end-of-life care services. The report identifies major problems, including lack of knowledge about services, misunderstandings, mistrust and lack of cultural sensitivity on the part of service providers. How are the Government addressing this issue and including it in their work to assess future service needs and funding? Are the pilots collecting data on these vital issues?