Access to Palliative Care and Treatment of Children Bill

Posted by Lord Sheikh

My Lords, I begin by saying that I support this tremendously important Bill. I commend the noble Baroness, Lady Finlay, on her tireless dedication to the improvement of palliative care across the country and on introducing the Bill in your Lordships’ House. As someone who has supported the hospice movement for many years, I am glad that we are putting palliative care on the agenda and ensuring that it receives the recognition it rightly deserves.

Death is the only certainty we have in life. However, I believe that life is sacred. We have a duty not to give up on those who are suffering in any way. I therefore feel that we should not debate the ending of lives. This is why I have previously spoken in opposition to the Assisted Dying Bill in your Lordships’ House and in other places. The right to die can easily become a duty to die, but no life is less worth living than another.

Dying is an important stage of life, and, unfortunately, almost everyone will experience the passing away of someone close to them. It is regrettable that dying is made difficult for some people, their families and their carers. I therefore believe that our time should be spent discussing how we can better take care of adults and children or the vulnerable in their final part of life.

I am pleased that the Bill rightly places a duty on clinical services commissioners to ensure that palliative care is accessible to all patients of all ages, all over the country. In the next 10 years, over 5.5 million people in England will die, and around 75% of them will need some form of palliative care. For three-quarters of people, death is not sudden but expected. In the National Survey of Bereaved People, published in 2016, patients’ families recorded that 81% of patients expressed a wish to die at home or in a hospice. Despite this, nearly half of all deaths occur in hospital, while only 23.5% in England take place in the home.

It is important that we focus on recognising people who would benefit from receiving care in the community and move them away from hospital settings. If the increased palliative care needs are not met, acute and A&E services will take the burden. Indeed, around 30% of emergency admissions are for people in their last year of life, which amounts to 11 million bed days, costing the NHS over £2.5 billion. That is projected to double by 2041, and an additional 8,000 hospital beds will be needed. Therefore, we must actively pursue sufficient access to 24-hour general and specialist palliative care services in homes and care homes that provide the same standard of care as hospitals. We should all recognise that we have a duty to provide palliative care ?in the same way that we do for maternal health, because we are born and therefore we will at some stage die.

Community end-of-life care allows for a holistic approach that emphasises collaboration between the various health providers. Our hospices and the voluntary sector do not have the resources and capacity to provide palliative care for people of all ages who need it. Some hospice services are running on as little as 10% NHS funding, with the rest being raised by charitable means. In some cases, the funding received by voluntary organisations has not risen in 20 years. I note that the Government have pledged £25 million to protect hospices and palliative care services which support around 200,000 people. This cash boost will be distributed by clinical commissioning groups. I would like to see that sum being paid annually—I reinforce the point made by my noble friend Lord Ribeiro and the noble Lord, Lord Hunt.

We need to ensure that the postcode lottery of access to palliative care services must end. Figures from Marie Curie suggest that each year around 150,000 people in the UK do not receive the care and support they need at the end of their life. Furthermore, its fast-track continuing healthcare analysis found that only 22% of clinical commissioning groups were delivering palliative care packages that fell within the guidance timeframe of two days. We must have parity in accessible palliative care across the country and ensure that hospices are treated on the same basis as any service commissioned by clinical commissioning groups.

I am glad that the Bill would entitle hospices providing palliative care services to access pharmaceutical services on the same basis as other services commissioned by clinical commissioning groups. It has been brought to my attention that people are less likely to receive palliative care if they are over 65, have a non-cancer diagnosis, are from a BAME background or are single. I am therefore pleased to note that the Bill provides for general and specialist palliative care services that are consistent with the duty to reduce inequalities. I am also pleased that it contains a requirement for clinical service commissioners to produce end-of-life statistics that include the provision of specialist palliative care and hospice plans to meet the needs of patients.

I find it shocking that Hospice UK identified that in May 2016, 25% of clinical commissioning groups did not have a strategy to address end-of-life care. While preparing for this speech in support of the Bill, I communicated with various hospices, as well as the Rainbow Trust Children’s Charity, which provides emotional and practical support to families where a child has a life-threatening or terminal illness. I have been made aware that the number of children and young people requiring palliative care is rising. This is due in part to advances in medical science which mean that more seriously ill babies are surviving birth and children are living longer with complex conditions. Children’s conditions are also more unpredictable than those of adults.

Another challenge in palliative care for young people relates to the giving up or withdrawal of medical treatment. I am satisfied that the Bill emphasises mediation, with an independent mediator to reduce ?and resolve any differences that may arise when a child is ill. Mediation is a transparent and holistic process. I worked as a mediator in disputes relating to contracts, so I am a great believer in the mediation process. I stress that a child suffering from a life-limiting illness has an impact on the entire family—parents and siblings. Court cases in this environment can be traumatic for everyone involved and can often be a lengthy process. I emphasise that children are best when they are alive. Furthermore, court cases can lead to high costs for the NHS if a case is not resolved in time.

I feel that this Bill solves many problems, especially concerning the approval of treatment for children. It is significant that it has provision for an independent mediator, as I feel it is important to have an aspect of impartiality in mediation so that a solution can be found.

I end my contribution today by recognising the contribution of Dame Cicely Saunders to palliative care. She was a pioneer of the modern hospice movement, 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 and had conversations with her regarding the important role that hospices play in palliative care. In fact, I have a connection with St Christopher’s Hospice, which she founded. She emphasised to me that there is so much more to be done to improve palliative care. I agree with her and I certainly do all I can to support hospice movements in this country.

Palliative care focuses on maximising quality of life, and to me it seems inhumane that specialist and generalist palliative care is not accessible for everyone. So I am grateful to the noble Baroness, Lady Finlay, for providing us with an opportunity to remedy this inequality. I hope that this discussion can be continued by this Bill’s progression, so that palliative care receives the recognition and support it so greatly deserves.

Link to full debate on Hansard.

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