Charlie's Law Blog

Opinion and Editorial – Baroness Finlay of Llandaff

7th February 2020,

Many people are not given the right care at the end of their lives – here is my plan to achieve this

Two things in this life are certain, we are born and one day we will die. In between, we rely on our wonderful NHS for diagnosis, treatment and care from birth. But, despite the certainty of our eventual end, thousands of people are simply unable to access vital services to make their final days as comfortable and pain free as possible. 

Today, the day this article is published, many people will die peacefully and gently with the right physical and mental health services whether at home or in hospital, knowing their family are prepared and supported.  But sadly that does not apply to all. It is estimated that 92,000 people each year in England do not receive any palliative care. They do not receive the symptom control, communication, out of hours services, care planning, and timely expert advice if a crisis occurs. In many areas, palliative care is excellent – a comprehensive set of services with the voluntary sector and NHS working together to give people the support and care to address their and their family’s needs. In other areas, palliative care access is variable and services struggle for funding.  Where services are patchy people are more likely to die in pain and distress. 

During my career as a doctor, I specialised in palliative care medicine and, because I know how good the service can be, I have dedicated much of my time in the House of Lords to championing equal access to end of life care across the country. This is why I introduced the Access to Palliative Care and Treatment of Children Bill, which I hope will do just that. 

This isn’t just a Bill; it’s about conversation. One that is still often a taboo. When we do talk about death, it’s around the corner. It’s often too difficult in crisis to talk calmly and openly, listen attentively and put plans in place.  Palliative care often should start at the point of diagnosis and can run alongside treatment of disease. In fact, with early palliative care, patients live better and longer at no additional cost overall. 

We know what to do, but we aren’t always doing it 24/7. And so, therefore, there must be comprehensive provision in place everywhere and the right training for all NHS staff. That is the purpose of this Bill: it will ensure that wherever you live there are provisions in place – led and monitored through each local commissioning group’s  strategy – to have end of life care at a hospital, hospice, nursing home or your home in the community you love. 

Hospices carry the weight of palliative care on their shoulders. They do this without having the same pharmacy support as hospitals when patients need complex medication. This Bill aims to support their tremendous work meticulously attending to their patients and supporting families. 

My Bill recognises that children with life-limiting illness also need specialist care.  Sadly, there will be heartbreaking circumstances when decisions will have to be made about whether they should continue to receive life-extending treatment. These decisions are incredibly difficult for all.  They can lead to high levels of stress and tension, with disagreements between doctors and parents about a child’s course of treatment.  Some recent court cases, including the tragic case of Charlie Gard, are unbelievably distressing for all involved. This Bill will ensure early access to mediation services to quickly resolve conflicts, to safeguard the relationship between doctors and parents, and avoid conflicts escalating to the High Court – which benefits no one. 

Palliative care services, both general and specialist, must be accessible to meet needs. I hope this legislation will ensure dignity and quality of life even at the very end; and give people, as far as possible, the support to have meaningful final days in comfort. Today, [Friday 7th February] the Bill will be debated in the House of Lords and I will call on my peers to support the call for people to be able to access the care they need.