The Parliamentary Under-Secretary of State, Department of Health (Lord O'Shaughnessy) (Con)
My Lords, I thank the noble Baroness, Lady Finlay, for precipitating the debate. In many ways this is the most difficult of all subjects to discuss. I pay tribute to her courage and leadership in the work she has done to bring it to the fore and to make it an issue of such public policy importance.
As the noble Lord, Lord Carlile, said in his speech, in recent years there has been a much greater focus on improving the quality of people’s experiences of end-of-life care—to help them, as my right honourable friend the former Health Minister, Ben Gummer, put it in his foreword to the Government’s response, to experience a “good death”, or as the noble Baroness, Lady Finlay, put it, gentle dying. As the noble Baroness said, bad care should never happen. We know that many people in England already receive good end-of-life care and internationally we continue to lead in the overall quality of end-of-life care provided. That is the result of sustained effort over recent years to improve people’s experiences of end-of-life care. I join all noble Lords in thanking the staff who work in our health and care system, and the many charities that have been mentioned tonight and others besides that support people at the end of their lives.
However, as we recognised in our response to the independent review of choice in end-of-life care, and as all noble Lords have rightly argued, there is too much unacceptable variation in quality and provision. This can have real consequences for the care that some people receive at this all-important time in their lives. I thank deeply the noble Baroness, Lady Masham, for sharing the moving story of her husband’s death and the noble Baroness, Lady Massey, for sharing the story of her brother’s death. I and, I know, the whole House will agree wholeheartedly with them that the description of what end-of-life care should be like, with compassion at its heart, is what motivates us. That is what sits behind everything the Government are trying to do and is what motivates people who work in this important sector.
To address the issue of variation and to provide the kind of patient choice that the noble Baroness, Lady Meacher, called for, last year we set out our ambition for everybody approaching the end of life to receive high-quality care that reflects their individual needs, choices and preferences. I thank my noble friend Lord Suri and other noble Lords for welcoming these plans. The plan is based on six commitments, setting out what all people at the end of their life should be able to expect from care. They include honest discussions between care professionals and dying people, and dying people making informed choices about their care. The noble Baroness, Lady Meacher, brought out a helpful statistic that while 82% of people have strong views, they may not be informed of the choices available to them. The third commitment is personalised care plans for all; then there is discussion of personalised care plans with care professionals, the involvement of family and carers in dying people’s care, and a key contact so dying people know who to contact at any time of day.
These commitments apply to all end-of-life care, whether delivered in a hospital, a hospice, or as part of a community service in a care home or a person’s own home. They apply to all parts of the country and underpin local plans to deliver end-of-life care in every clinical commissioning group.
The national end-of-life care programme board has been set up to oversee the implementation of this plan. It is chaired by Sir Bruce Keogh, NHS England’s medical director. We have also called on local health and care leaders, including commissioners and all health and well-being board chairs, to prioritise improvements to end-of-life care in their plans to improve local services. We are taking a number of specific actions to support these commitments. I will give a few examples.
To improve the quality of care in hospitals, all NHS trusts that have a poor CQC end-of-life care rating been visited by NHS Improvement to support them to improve their offer.
Several noble Lords have highlighted the importance of training. Health Education England is changing its training standards so that care workers have the right skills mix, including, I hope, digital skills, as the noble Baroness, Lady Lane-Fox, pointed out. I will check that that is the case. They should have the right training to support honest conversations and personalised care. NHS England is currently working with two new care model sites in Airedale and Southend to test an innovative approach to serious illness conversations, in which clinicians are trained to support people with serious illnesses to discuss what is important to them.
I thank the right reverend Prelate the Bishop of Durham for highlighting the important and very powerful impact that chaplains have on people at the end of their lives. They provide an invaluable service. I will write to Sir Bruce Keogh, who, as I mentioned, is chairing the national board, to emphasise the important role that chaplaincy can and must play in provision of end-of-life care for people with or without a religious belief.
On greater personalisation of care and care planning, NHS England is working to ensure that shared digital palliative and end-of-life care records will have been rolled out to the majority of local areas by 2018 and all areas by 2020 to enable preferences to be recorded, shared and achieved more easily. As the noble Baroness, Lady Lane-Fox, highlighted, good data and digital provision can help enormously to improve end-of-life care. I am encouraged by the work that she is doing, although alarmed by the statistics that she mentioned about care homes not having wi-fi—that has been addressed in hospitals but not in that setting, and is something that I will investigate.
To improve access to urgent clinical advice and support for end-of-life care, including expert advice on specialist palliative care, NHS England is ensuring that each clinical advisory hub across the country will include clear and explicit processes for access to palliative care and will be accessible to individuals who need the service, their families and professionals involved in their care.
Several noble Lords mentioned the importance of good commissioning, including the noble Baroness, Lady Meacher, who demonstrated the impact that good commissioning can have on improving outcomes and quality of life. In line with the plans we are setting out in the government response, we are also taking a number of actions to improve the way in which care is planned and commissioned. This includes work between NHS England’s regional offices and local commissioners to put end-of-life care at the centre of activity as part of local sustainability and transformation plans.
The noble Baronesses, Lady Wheeler, Lady Meacher and Lady Walmsley, all mentioned sustainability and transformation plans—indeed, the noble Baroness, Lady Finlay, mentioned them both today and in an earlier debate on this issue. The plans are now being consulted on, so this is now an opportunity to make sure that they properly represent all the imperatives that they should. The national programme board, chaired by Sir Bruce Keogh, is preparing a support offer to those STPs that have not yet planned for it well to make sure that it is done properly.
The noble Baroness, Lady Walmsley, asked about care currencies. She was quite right about the tendency to jargon in this area; it is described as a specialist palliative care currency model, I am afraid, so it is worse than she feared. But the idea is a good one—she highlighted the importance of it—which is to provide a level of transparency and certainty on the kind of funding that will follow. It will not be precisely payment by results or payment by outcome, because of the importance of the charitable sector, but it will provide greater transparency and certainty on the funding of hospices. We aim to publish that shortly.
The government response has made key commitments on holding the system to account for the improvements that we want to see, including addressing unacceptable variation. It includes introducing a separate priority area within the CCG improvement and assessment framework for end-of-life care, as the noble Baroness, Lady Walmsley, pointed out. We are also developing new metrics for end-of-life care that have been put forward for potential inclusion, which will allow us to hold CCGs to account for their performance in this area.
Several noble Lords referred to children’s hospices. In a difficult subject, the heart-breaking idea of tiny children with short lives and life-limiting conditions makes it even harder. I agree with all noble Lords about the importance of palliative care for children. Some £11 million is available through the children’s hospice and hospice-at-home grant which goes to support children’s hospices on top of what clinical commissioning groups do. NHS England is engaging in consultation with Together for Short Lives on its 2017-18 grant allocation. It is intended that this new palliative care currency will also help to provide greater transparency, clarity and consistency for the funding of all hospices, both for adults and for children.
The noble Baroness, Lady Finlay, asked about better outcomes for dying people. There are now new NHS clinical guidelines that those working in the sector must follow, as I am sure she will know. We have also commissioned the charity Sands to develop a standard bereavement pathway so that there is greater consistency across the country. The noble Baroness asked about a framework funding model. I hope that I have addressed her questions on that in describing the palliative care currencies, which will be published shortly.
The noble Lord, Lord Rees, asked about more resources. There was of course an announcement in the Budget of additional support for social care, which I realise is not the same as end-of-life care, but does incorporate people who are at the end of their lives if they are in a care setting. I hope this was welcome. We also have an important commitment to a long-term solution for care, and a further Green Paper to follow on that issue. For that to be truly comprehensive and sustainable, it must also incorporate a sustainable regime for end-of-life care within those kinds of settings, so I hope noble Lords will welcome the announcement that that will be coming later this year.
To conclude, I thank the noble Baroness, Lady Finlay, for highlighting this incredibly important issue. I remember as a teenager reading A Happy Death by Albert Camus. As a teenager, I think you veer between being horrified by the idea of death and thinking that it will never happen to you; and then you grow up. While I may no longer be an existentialist, I still agree that a happy death—gentle dying—is the right outcome that we want to achieve universally in this country. We are starting from a point of variation and, as the noble Baroness said, there is bad care and there should not be bad care. We are fully committed to working with all people in the care sector, with carers, to ensure that anyone with a terminal illness has access to the high-quality, personalised care that they deserve.