My Lords, we welcome another opportunity to consider the very important issue of how people are cared for at the end of their life. The
Joint Committee on the Bill urged progress on this vital matter and strongly endorsed the case for the introduction at the earliest opportunity of free social care for terminally ill people. In this context, the Government’s amendment is very much work in progress as it makes explicit the local authority’s power to treat end-of-life care as urgent, in a similar way to how fast-tracked access to welfare benefits such as the disabled living allowance is expedited and works in practice under other legislation, which the noble Baroness, Lady Finlay referred to. The amendment makes it clear that local authorities have the ability to consider the needs of terminally ill people as urgent and to meet their needs ahead of conducting assessments.
We welcome this provision. Many councils already fast track social care in this way, and I hope that this amendment will give those councils that do not the push and impetus that they need to take up this very self-evident and fundamental requirement. The new clause in the Bill is rightly welcomed by the Sue Ryder Foundation, Help the Hospices and Macmillan Cancer Support. However, as Macmillan also points out, the provision is permissive and does not legally require local authorities to meet a terminally ill person’s need for care and support without a needs or financial assessment.
We recognise that there is still much work to be done on this matter. The Government are currently undertaking a review and refocus of the end-of-life strategy and I read in the press over the summer that it was shortly to be published. It is now six years since the strategy was introduced under Labour so I would be grateful if the Minister could update the House on the timetable for that.
As we recognised during the debate in Committee, the results of the seven adult and one children’s palliative care pilots will be crucial to considering the move towards the provision of free end-of-life care as called for by the Joint Committee and as set out in Amendment 137 in the name of my noble friend Lord Warner, supported by the noble Baroness, Lady Greengross, and the noble Lord, Lord Patel. We need to understand current patterns and resource use across health and social care at the end of life, and to have the vital data—from across care provided by the NHS, social care, and the voluntary and private sectors—from which the costs of an integrated end-of-life care system can be properly assessed. The Minister reassured the House that the pilots are on track, despite the handover of responsibility to NHS England and concerns that the work was falling behind. We certainly hope that this is the case as the pilot findings will be so important to how future services can be shaped and delivered.
We acknowledge and share the Government’s concerns about the issues raised in Amendment 137 that the infrastructure may not be in place to support people’s preferences about where they wish to die; commissioners need to be sure that the right services are in place in the community to support people being looked after in their home. My own party is currently working on this as part of our policy review and whole-person care commission, and I know that my noble friend Lord Warner’s contribution to that work will be much appreciated and valued. Enabling NHS patients to have the right to die in the place they regard as home or their normal residence can be achieved only if end-of-life care is fully integrated across the NHS, local councils and hospices, to foster mechanisms to make it achievable and not simply an aspiration.
Once again, the position of carers of people who are terminally ill, as well as those they are caring for, needs to remain to the fore when we are looking at this matter. In Committee my noble friend Lady Pitkeathley cited the Carers UK survey that showed just how much more support is needed for carers to help them think and plan for the end of life of the person they are caring for—something that we can and should be taking action on now. Many carers just do not know how to plan for the death of a loved one and how to try to look ahead when caring ends—returning to or taking up work, social contact and managing financially.
One of our bereaved carers I spoke to recently through our local Carer Support Elmbridge had had a nightmare experience over funding and not being able to ascertain who was paying for what in the transition from social care to NHS continuing care before her husband died. This included two months’ overpayment by social services, which had to be sorted out after the death, at a time of great anxiety about family finances. To add to this, an ambulance turned up two months after her husband’s death to take him to his routine blood test at the local hospital. Your Lordships can imagine how devastating this experience was for the carer. Sadly, this is not an isolated case, and an integrated end-of-life strategy has to make sure that these things do not happen.
Finally, in Committee I raised the issue of access to palliative care and end-of-life care for BME groups following the recent and alarming findings of the Marie Curie Cancer Care and Public Health England survey and the shockingly low use of these services among black, Asian and ethnic minority groups. The report identified major problems involving lack of knowledge about services, misunderstanding, mistrust and a lack of cultural sensitivity on the part of providers. In his August letter to noble Lords, the Minister referred to the work that NHS England is undertaking on this in conjunction with palliative care pilots. Will the Government be responding specifically to the Public Health England report, or is it part of the strategy review and refocus? Will the Minister set out for the House the Government’s outline timetable for the review and publication consultation, the timing of the publication of the pilot’s results, as requested by my noble friend Lord Warner, and the introduction of the new funding system for palliative care as promised for 2015?