Access to Palliative Care Bill [HL]

Baroness Hollins Excerpts

2nd reading (Hansard): House of Lords
Friday 14th June 2019 Lords Chamber

[Baroness Hollins (CB)]

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.

--- Later in debate ---

[Baroness Barran (Con)]

My Lords, I start by expressing my great respect for the noble Baroness, Lady Finlay, and her long-standing contribution to palliative and end-of-life care, not just in the UK but worldwide. As noble Lords have all said, every one of us in your Lordships’ House has had experience of death, whether, tragically, in our role as parents, as children, as friends or as family members, so this debate touches every one of us personally in a particular way. I also recognise the invaluable and tireless work of all the end-of-life care charities, staff and volunteers around the country.

While we know that the vast majority of services are delivering excellent end-of-life care to patients, we also know that more needs to be done to meet our ambition to reduce variation in care at the end of life and to ensure that everyone can access care of the highest quality with the greatest possible choice. Of course, I include children in that, as the noble Baroness, Lady O’Loan, articulated so clearly. I therefore understand the intention of the Bill, which is to improve end-of-life care and tackle the variations in provision, whether those be regional variations or variations touching more vulnerable groups, such as those with learning difficulties, as the noble Baroness, Lady Hollins, explained.

As we have heard, the Bill seeks to introduce a range of measures relating to the provision of palliative and end-of-life care services and to create a duty on all clinical commissioning groups to publish a palliative care strategy including these service elements. I fear that I am going to disappoint my noble friend Lord Bridgeman and the noble Lord, Lord Browne of Ladyton, when I say that the Government believe that decisions regarding the configuration of services and the approach to meeting need in a local population are for clinicians, commissioners and providers—of course, taken in consultation with patients as far as is practicable. I will try to explain later in my speech what measures we are introducing which mean that these inequalities—in the words of the noble Lord, Lord Browne of Ladyton—do not persist.

No other area of clinical care is mandated in this way in primary legislation. We believe that such an approach would set an unhelpful precedent and suggest that each condition, service or treatment pathway should also be enshrined and stipulated in legislation, along with the need for a corresponding local plan. We are concerned that this could unhelpfully and unnecessarily complicate local planning and interfere with best practice decision-making.

Clinical commissioning groups are bound by a duty to commission health services based on the assessed needs of their local populations, and palliative care is covered by this general stipulation. However, I accept that—as many noble Lords including my noble friend Lord Sheikh pointed out—there are significant variations in the provision of palliative care across clinical commissioning groups in England, including in access to 24/7 specialists in hospital and the percentage of people dying in their own homes. The noble Baroness, Lady Jolly, echoed by the noble Baroness, Lady Thornton, raised points about how we oversee the commissioning by CCGs of end-of-life services and the inspection regime. On support, NHS England works with local area teams to support CCGs and sustainability and transformation partnership areas to develop and improve their end-of-life services. On inspection, the CQC inspects end-of-life care providers on the quality of their services, including on the choice indicators in place at death, and where there are three or more emergency admissions to hospital in the final three months of life. The status of the GP palliative care register also helps to assess performance. However, in recognising that the intention behind the Bill is to ensure that everyone can access high-quality end-of-life care, I will set out some of the key progress that has been made over the last few years and what steps will be taken as we continue to drive up the quality of services.

As noble Lords know, choice at the end of life is the centrepiece of the Government’s drive to improve end-of-life care. Where there is real choice, and where it is personalised and matched by healthcare services that respond in an effective and timely way that places patients, families and carers at the centre of decision-making, the NHS gets it right. In Our Commitment to You for End of Life Care, published in July 2016, we set out what everyone should expect from their care at the end of life, and the actions being taken to make high quality and personalisation a reality for all and to reduce the variation in end-of-life care. NHS England is responsible for delivering the commitment, in partnership with system partners and other key stakeholders, through its end-of-life care programme board. This has led to improvements in hospital care, where the CQC had found gaps, and to innovation in community-based care. The noble Lord, Lord Low of Dalston, and the noble Baronesses, Lady Brinton and Lady Hamwee, all mentioned training. That has now been introduced to the curriculum for doctors and nurses. We obviously acknowledge that there is more to do.

Looking to the future, on 9 January 2019 NHS England published its long-term plan for the NHS. This set out key actions to drive improvement in end-of-life care and to support choice over the coming years, including a focus on culture change, which the right reverend Prelate the Bishop of Coventry so wisely observed. As part of this, we are accelerating the rollout of personal health budgets to up to 200,000 people, including those with palliative and end-of-life care needs benefiting from a PHB, by 2023-24. We are rolling out further training to help staff identify and provide personalised care planning for everyone identified as being in their last year of life, improving care, reducing emergency admissions and supporting more people to die in the place that they have chosen.

We are putting in £4.5 billion of new investment to fund expanded community multidisciplinary teams, providing rapid and targeted support to those identified as having the greatest risks and needs, including those at the end of their lives. We are upgrading NHS support to all care home residents and making end-of-life care one of two new quality improvement areas for the revised GP quality and outcomes framework. We are match-funding CCGs which commit to increase their investment in local children’s palliative and end-of-life care services—raised rightly raised by the noble Baroness, Lady Brinton —by up to £7 million a year by 2023-24. However, we recognise that we need to do more, particularly because home and hospice are the preferred places of care and death for many people, yet 47% of all deaths currently occur in hospital. The £4.5 billion that NHS England is investing in primary and community care will go some way to addressing this.

Furthermore, earlier identification of patients approaching the end of life is crucial. It means effective care planning can take place, and people can express their views on the interventions that they may or may not wish to receive. I note the concern of my noble friend Lord Balfe about the Dying to Work campaign and undertake to highlight this to my honourable friend the Minister in the other place. However, all employees with progressive or debilitating diseases are protected against any discriminatory conduct by the Equality Act. The noble Baroness, Lady Meacher, asked me to write to the department about how many hospital admissions could be avoided if palliative care is provided. I am happy to undertake to do that. I would be equally delighted to meet the noble Baroness, Lady Jolly, to discuss her amendment, which touches on such an important and sensitive area.

In conclusion, I again thank the noble Baroness, Lady Finlay, for raising the issue of end-of-life care through this Bill and giving the Government a chance to set out our plans to achieve continued improvements. If she has any continuing concerns, I will of course write to the Minister in my department suggesting that they have a meeting, so she can explore them more. In general, I hope that my response has reassured noble Lords that the Government are taking action and are absolutely committed to improving end-of-life care through the choice commitments and the initiatives in the long term—

[Baroness Hollins]

The Minister asserted that no other condition is mandated and that this would set a precedent. Surely midwifery services are mandated? Birth and death are just either ends of life. I do not quite understand.

[Baroness Barran]

I will have to write to the noble Baroness to confirm. I questioned and triple-checked that point with the department, so I undertake to write and clarify it if there was a misunderstanding. I hope she will accept that. To recap, our view remains that legislation is not required on this issue.