Access to Palliative Care Bill

Posted by Lord Sheikh

My Lords, I pay tribute to the noble Baroness, Lady Finlay, for tabling this Bill. It is an important Bill and I have the pleasure to speak in support of it. I begin my contribution by making reference to the conversations I had with Dame Cicely Saunders. Dame Cicely was a pioneer of the modern hospice, which takes a holistic approach to palliative care, managing physical symptoms and tailoring care to meet the social, emotional and spiritual needs at the end of a person’s life.

I met Dame Cicely Saunders because I support the hospice movement. She recognised the important role that hospices play in palliative care. In fact, I have a connection with St Christopher’s Hospice, which was founded by Dame Cicely. She emphasised to me that there is much more to be done to improve palliative care.

I have spoken in opposition to assisted dying in your Lordships’ House and at other meetings. I feel that we should not debate ending the lives of people who are suffering. We owe a duty to people who are ill—in fact, to all people—not to give up on them. A right to die can easily become a duty to die. The law ?should not affirm that some lives are not worth living. A vulnerable person may start to think that they are better off dead, but those tempted to think about themselves in this way need protection and care, as no life is less worth living than another. Life is sacred. I believe our time would be better spent discussing how the state, the medical profession, hospices and society at large could better take care of people who are vulnerable in the final years of their lives.

To prepare for my speech in support of the Bill today, I had discussions with St Christopher’s Hospice, which was able to provide me with some additional information. St Christopher’s Hospice fully endorses the Bill, as it will ensure high-quality care for all dying people and that those close to them have access to care and support, whenever and wherever they need it. I must emphasise that hospices and the voluntary sector do not have the resources and capacity to provide palliative care for everyone who needs it. We ought to take a holistic approach to these issues.

Palliative care focuses on maximum quality of life. It seems inhuman to me that specialist and generalist palliative care is not accessible to everyone. I am grateful, therefore, to the noble Baroness, Lady Finlay, for providing us with an opportunity to remedy this inequality. Every year, approximately 500,000 people die in England. This figure is set to increase by 26% by 2040, due to England’s ageing population, and it is suggested that the demand for palliative care will rise by 40% in this time. The funding and commissioning of palliative care is a responsibility the Government should undertake diligently. For three-quarters of people, death is not sudden but expected. I was shocked to discover that, as recently as May 2016, it was identified that 27% of clinical commissioning groups did not have a strategy to address end-of-life care. Increasing numbers of patients express their wish to die at home—this reflects 81% of patients, according to families who responded to the National Survey of Bereaved People in 2016.

Despite this, the majority of people still die in hospital, with only 23.6% of deaths in England taking place at home. What is required is a strategy for clinical commissioning groups to provide appropriate palliative care services. I am therefore pleased that the Bill seeks assurance that clinical commissioning groups will take palliative care needs seriously. They will need to review and prepare strategies as necessary and at least every three years.

The Bill also provides for the clinical commissioning groups to establish parameters for their strategies. The strategies will need to establish what palliative care needs are locally, develop an approach to combating these needs, provide for specialist palliative care needs and ensure that methods of reporting and collecting the necessary data are available, so that patients have the best possible service. I note that around three-quarters of people will need some form of palliative care when they die but, at present, the palliative care needs of an estimated 118,000 people are not being met.

Figures from Marie Curie suggest that one in four people in the UK do not receive the care and support they need at the end of their life. The noble Baroness, Lady Finlay, stated that the report Dying without Dignity ?by the Parliamentary and Health Service Ombudsman found that the key themes in complaints about end-of-life care are: not recognising that people are dying; not responding to their needs; poor symptom control; poor communication and inadequate out-of-hours service; poor care planning; and delays in diagnosis and referral for treatment.

Politicians often talk of a postcode lottery for certain services, but this can be seen no more profoundly than in palliative care. At present, there is no parity in accessible care across England. For instance, there appear to be wide discrepancies in access to beds between some areas. As there is disjointed health and social care provision across England for people nearing the end of life, there needs to be better co-ordination and standardisation between services for end-of-life care.

The Bill rightly places duties on clinical commissioning groups to ensure that palliative care is accessible to all patients of all ages. There also needs to be better communication with the patients themselves. Patients of course rely on the guidance of their carers and medical professionals, but they also need to know that their voices are being heard. They need to be able to express their concerns and have them listened to.

When people are in their final days, we often speak of wanting to stop their suffering. A Time and a Place, a report published by the Sue Ryder charity in July 2013, notes that, when asked what they want at the end of life, 78% of people want to be free from pain and discomfort. Even with the huge medical advances we have seen, it is not always possible to completely remove someone’s pain. We need to do all we can to remove the worries from patients and improve their quality of life as much as we can. The Bill has the provision to ensure that patients have access to appropriate health services, such as pain and symptom management.

We also need to engage in constructive dialogue with patients’ families. It puts great strain on families to know that their loved ones are suffering and have discomfort in their final days. In addition, according to project work carried out by the BMA, a key concern of patients at the end of life is their family members’ well-being and the impact their passing will have on them. Psychological support provisions will help relatives in the short and long term, as well as reduce anxiety for patients.

I therefore welcome the Bill, which will ensure that there is an obligation on clinical commissioning groups to provide support for families, as well as patients, and provides an assurance that all parties involved are well informed about the support services available to them. I end by saying that death is one thing we can all be certain of, but we cannot currently be certain that, in our dying days, we will have the help we need. I hope that this discussion is continued by the Bill’s progression, so that palliative care receives the recognition and support it so greatly deserves.

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