Access to Palliative Care Bill [HL]

Lord Howarth of Newport Excerpts

Friday 23rd October 2015 Lords Chamber

[Lord Howarth of Newport (Lab)]

My Lords, it is a pleasure to follow the noble Lord, Lord Howard of Lympne, whose work on behalf of hospices I admire just as I admire the hospices themselves. I add my congratulations and thanks to those offered to the noble Baroness, Lady Finlay of Llandaff, for tabling this Bill, which I fully support.

I shall start by talking about the needs of children in palliative care, responding to the urging by the noble Lord, Lord Crisp. I am sure that all noble Lords have received the briefing from the admirable charity, Together for Short Lives, which tells us that, in the United Kingdom, some 40,000 children live with life-threatening or life-limiting conditions.

Children’s palliative care is different and needs to be different, if only for one important reason: because it may well, sadly, be needed for the whole of a child’s life. Yet the availability of resources for children’s palliative care is even more inadequate than it is for adult palliative care. Clinical commissioning groups contribute on average 10% of the cost of children’s hospices compared to 30% of the cost of adult hospices. Thirty-five per cent of children’s hospices had their funds frozen between 2013 and 2015 and 23% had their funding cut. Some families in remote rural areas have no access to specialist children’s palliative care. There is a dearth of people with the skills and knowledge to care for children who suffer from complex and life-threatening conditions.

The Health Select Committee noted also that a wide variety of childhood conditions can cause death before adulthood. Many of them are rare and, therefore, the requirement for diversified specialist care is all the greater. A Royal College of Nursing survey in 2015 found that nearly a third of children’s nurses said that they did not have the resources to deliver adequate care in a home setting, which of course is what most families want; and 31% of nurses acknowledged that they lacked the confidence to discuss end-of-life issues with children and their families.

The RCN calls for a greatly increased number of undergraduate training places to address what it describes as,

“massive gaps in children’s nursing”.

Only 17 community children’s nurses were due to qualify in 2014-15. Many consultants in this field are approaching retirement; too many are not trained to level 4. The training of general practitioners in paediatrics and in physical and mental healthcare for children needs to be improved. There is a 15% vacancy rate among children’s social workers. The commissioning of children’s palliative care is patchy and inconsistent, insufficiently integrating the various disciplines and agencies that need to be involved. The Bill addresses this range of problems. I do not know whether the noble Baroness intends in due course to provide model guidance, but guidance would be preferable to amendments to the Bill.

As to the predicament of children who are bereaved or face bereavement, the Childhood Bereavement Network, to which the noble Baroness, Lady Hollins, referred, has again briefed us extremely helpfully. Its 158 members are supporting children before and after bereavement. The network estimates that some 30,000 children under 18 lose a parent each year and, of course, more lose a sibling or a grandparent. It is a very sensitive issue and it is very difficult for children, parents and professionals to communicate in these situations.

Gillian Chowns, writing in Bereavement Care and reporting on her research among adolescents facing the death of a parent from cancer, quotes those children. We hear their own voices describing their struggle with their isolation, their anxiety—who is going to care for them when a parent is gone? They want to know the full truth and they need the opportunity to release strong emotions. All such children should have access to well-organised support, proper information, a plan as to who is to do what, and advice and support for other family members, carers, their peers and their teachers. Only 65% of local authorities have an open-access service for bereaved children and most of those services are provided by the voluntary sector through charities such as the wonderful Winston’s Wish.

As the noble Baroness, Lady Hollins, also mentioned, children who suffer bereavement typically face worse outcomes in their future lives, including earlier mortality, mental health problems and entanglement with the criminal justice system. It is not only better but cheaper to ensure that these children come through the emotional crisis of losing a parent or someone important to them without being traumatised.

Many noble Lords will have read the beautiful book by Atul Gawande, Being Mortal, in which he argues that the role of those caring for the terminally ill is not to fight death to the ultimate but to ensure well-being—to ensure what the noble Lord, Lord Howard, called good deaths.

I will make one final point. The arts have an important contribution to make in palliative care. Music therapists, storytellers and those practising other art forms are able to help terminally ill people to prepare mentally, emotionally and spiritually for crucial transitions; to turn depression into hope; to have a sense of agency; to integrate feeling with cognition and sensation; and to gain insight and a sense of meaning and value in what would otherwise be a deeply unhappy and traumatic situation. The arts provide a safe opportunity to organise intense, confusing and contradictory thoughts and feelings; to find self-expression; to share important information that has previously been too difficult to talk about; and to mitigate isolation.