My Lords, I support both these amendments, and I refer to my interests as laid out in the register as a trustee of the Neurological Alliance of Scotland and chair of the Scottish Government’s National Advisory Committee for Neurological Conditions.
There is evidence, as we have heard, that people provided with early palliative care and support in all settings, as is laid out by Amendment 52, achieve better
outcomes and, as the right reverend Prelate the Bishop of Carlisle said, that it prevents unwarranted hospital admission. I would commend the Minister to look at the model in Scotland, where the Scottish Partnership for Palliative Care brings together health and social care professionals from hospitals, social care services, primary care, hospices and other charities to find ways of improving people’s experiences of declining health, death, dying and bereavement.
Perhaps what differentiates palliative care from just good care is the awareness that a person’s mortality has started to influence clinical and more personal decision-making. However, I beg to disagree with the noble Baroness, Lady Finlay. This is not about the fact that we are all going to die; it is about life. It is about the care of someone who is alive—someone who still has hours, days, months or years remaining in their life. It is about optimising well-being in those circumstances.
A major problem for people who need and would benefit from specialist palliative care is that they are often referred very late to such services or not referred at all, because such services are erroneously perceived by many other professionals, and the public, as relevant only at the end of life. Unfortunately, access to specialist palliative care is therefore not available to people dying with neurological conditions. Although there has been some progress, most people dying with terminal or progressive neurological conditions die under the care of generalist health and social care teams, in hospitals, care homes or at home. The recent research by Marie Curie, quoted by many noble Lords this evening, points out the patchy access to palliative care, and people with neurological conditions are overrepresented in not being able to access it.
There is a very high level of unmet need. As the noble Lord, Lord Patel, mentioned, we should be angry that end-of-life care is not available—and for over half of people with neurological conditions, I am angry. For those who are receiving support from generalist teams, we know that hospital beds and suitable care packages are extremely scarce, especially as the health and care system seeks to cope with the Covid pandemic and its impact. As a result, we have a problem, and people are facing the end of their life without the support they require.
In a caring society, palliative care should be embedded into this Health and Care Bill. It should be a core service, available to all those who need it. I urge the Minister to support these amendments.