My Lords, I draw attention to my interests as set out in the register. I applaud my noble friend’s persistence in introducing this very important Bill. I am particularly pleased to see Clause 1(b), which recognises the need for psychological support for the person and their relatives.
According to Hospice UK, most hospices face cost pressures and their efforts to improve and extend access to palliative and end-of-life care to meet unmet need will be achieved only if local health and social care decision-makers play their part. If only death could be funded the NHS on the same basis as birth. I suspect that one of the reasons that it is not is because we do not talk about death in our society in an informed way. We need much better and wider education about death so that healthcare staff and relatives are not afraid to raise the subject and that death is something that people think and talk about prior to its impending arrival.
Marie Curie, the charity providing expert care and support for people living with a terminal illness and their families, has highlighted that each year in the UK as many as 150,000 terminally ill people do not receive adequate care and support at the end of life. I encourage noble Lords to come to listen to Irene Tuffrey-Wijne, the world’s first professor in learning disability and palliative care, deliver the Marie Curie lecture in the House of Lords next Wednesday. I declare an interest as Professor Tuffrey-Wijne is a former PhD student of mine. She will be looking at the challenges faced at the end of their lives by people with learning disabilities. There are many reasons why access to high-quality palliative care may not be available, but the reasons are compounded for people with learning disabilities, on whom I will focus my brief comments today.
There are more than 1 million people with learning disabilities in England. This is an ageing population, which means that growing numbers of them will need palliative care. Public Health England estimates that around 3,400 people with learning disabilities die in England each year. For decades, concerns have been raised about the health inequalities faced by this group, and this inequality becomes even more serious within end-of-life care provision. There have been shocking cases of failure in care leading to avoidable deaths and poor-quality end-of-life care. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities, which published its findings in 2013, found that the deaths of people with learning disabilities are often not anticipated and are poorly planned for and poorly co-ordinated. The subsequent learning disability mortality review programme now aims to review all deaths of people with learning disabilities in England. Its recently published third annual report states that 71 adults with learning disabilities whose deaths were reviewed by the programme—that is 8% of reviewed deaths—received care that fell so far short of good practice that it significantly impacted on their well-being or directly contributed to their cause of death. Reasons included a lack of co-ordination of care and poor-quality end-of-life care.
In the new NHS Long Term Plan, learning disability is highlighted as an NHS priority for improvements in care quality and outcomes, and reducing health inequalities for people with learning disabilities is specifically highlighted as an area of concern and in urgent need of improvement. On page 41 is a commitment to,
“ensure that reasonable adjustments are made so that wider NHS services can support, listen to, and help improve the health and wellbeing of people with learning disabilities”
On page 52 it states:
“The whole NHS will improve its understanding of the needs of people with learning disabilities”,
and stresses the need to work more effectively with people with learning disabilities and their families.
A 2015 white paper by the European Association for Palliative Care noted significant inequalities in access to palliative care for people with learning disabilities and found that good palliative care is more dependent on the commitment of dedicated individuals than on good policies, systems or guidelines. It recommended that policymakers prioritise equitable palliative care specifically for people with learning disabilities and commit adequate resources to it.
So what problems have been unearthed by the national mortality review programme? The recent annual report found that a key problem is the difficulty in recognising that the end of life is approaching or that palliative care is needed. Recognition is the first step in ensuring good access. A significant recommendation for 2019 from the authors of the mortality review is that the Department of Health and Social Care should prioritise certain programmes of work: those that support the recognition of deteriorating health or early signs of illness in people with learning disabilities. Why is this so complex? There are many reasons, including communication challenges, polypharmacy and the fact that many people with learning disabilities have high levels of comorbidity, some of which have been lifelong. Such comorbidity can obscure the signs of advancing illness or increasing frailty.
Professor Tuffrey-Wijne’s research programme at Kingston University and St George’s, University of London has found that people with learning disabilities are often excluded from knowing about death and are not told about terminal illness, so their death education is even more lacking. This means that they are inadequately prepared for what is happening to them and are not involved in making the decisions that affect them. This is relevant to the Mental Capacity Act and issues about how to empower this group and enhance their capacity for decision-making. Improving access to palliative care for people with learning disabilities must include ensuring that staff in all healthcare settings learn how to assess the needs of this group, how to make reasonable adjustments and how to communicate with them.
The new government proposal for mandatory learning disability training for all NHS staff, which has been out for consultation, is an important step in the right direction. I would welcome an update on the progress of the consultation and its relevance to the Bill. However, staff training alone is not enough to address existing inequalities and to prevent a repeat of some of the tragic situations that have been widely reported. Good palliative care provision for people with learning disabilities is just too haphazard. A clear policy focus is needed to ensure that people get the right end-of-life care, in the right place, at the right time. I always say that if we could get it right for people with learning disabilities, we could get it right for everybody else.
Preventable deaths must be prevented, and unpreventable deaths must be well supported. There is an urgent need for further understanding and knowledge about how health and social care services can make that happen, so research into this area is also an urgent priority. I hope that my noble friend will keep this vulnerable group in mind as the Bill progresses.
I understand that there is the possibility of an amendment to this important Bill with respect to very sick infants and their parents. Speaking as a former president of the British Medical Association and as a doctor, I know how distressing conflict between doctors and the parents of unwell children can be. I am also aware that not enough is done at the moment to mitigate those conflicts. Having worked with the parents of Charlie Gard, I am in awe of their humility and willingness to sit around the table with those who opposed them at a critical time for their son, who sadly died. Together with senior doctors, lawyers and ethicists, they have crafted a very modest proposal which I strongly believe will improve the situation for parents and doctors alike. Acceptance of their amendment would save public money through the avoidance of court fees and the unnecessary prolongation of treatment, and would help protect the bond between patients and those responsible for their medical care. I trust that the Minister will engage with the interested parties at her earliest convenience, because I know how widely these measures are supported in this and the other place. I wish my noble friend good speed with her Bill.