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Access to Palliative Care and Treatment of Children Bill [HL] - Second Reading

Part of the debate – in the House of Lords at 3:04 pm on 7th February 2020.

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Photo of Baroness Brinton Baroness Brinton Party Chair, Liberal Democrats, Acting Leader, Liberal Democrats 3:04 pm, 7th February 2020

My Lords, I thank the noble Baroness, Lady Finlay, for bringing this Bill back with some amendments, which have undoubtedly strengthened the one that we debated in this House in June last year.

For far too long, patients across England have been victims of a system of palliative care that lacks not only consistency but the resources to help them. I join noble Lords in being delighted that the Government have announced that they will provide £25 million for hospice and palliative care services, but I am concerned that the Library briefing tells us that the purpose of this investment is to

“help keep facilities open and ‘improve’ the quality of end-of-life care”,

as that is well below the target of this Bill. The Bill seeks to absolutely mainstream palliative care throughout the country. Given the debate and the comments from expert colleagues in the House today, I am sure that if that happens, money will be saved in the acute hospital system as well. What is not to like?

Noble Lords have covered an enormous amount of ground. From the Liberal Democrat Benches I confirm that we consider virtually all the Bill to be important and correct, and it certainly needs to be found a space so that it becomes legislation. I urge the Government, and particularly the Minister, to move us forward from the statement on 29 October that the Government would work with patients, families, local authorities and voluntary sector partners to ensure equity of access to general and specialist palliative care throughout England. My grandmother often used to say, “Fine words butter no parsnips”, and the problem with that statement is that you cannot ensure that equity of access unless the resources are there to support it. Therefore, I apologise to the Minister because, once again, I am going to say that we must have the resources to enable the Government to deliver on their extremely strong words. Let us make sure that Clause 1 is enacted as fast as possible.

Your Lordships will know that I have a particular interest in palliative care services for babies, children and young people. The briefing from Together for Short Lives has a brilliant opening statement:

“If passed by parliament, this bill would help to overcome many of the barriers children and families face. This bill could also help to make sure that parents of seriously ill children and the professionals and services caring for them resolve conflicts about what is in a child’s best interests by mediation and not in court”.

Hear, hear—we on these Benches echo that, as does the British Medical Association.

The Liberal Democrats have long sought to fund palliative care and the hospice movement through NHS funding, so we are pleased to support Clause 1 in its entirety. I thank the noble Baroness, Lady Finlay, for putting back on the face of the Bill the stronger form of the legal duty for the relevant bodies—“appropriate health services”—to provide and commission palliative care and psychological supports for patients and their families. That is extremely welcome.

There is still no method of accountability to ensure that CCGs and other health bodies serve patients to the best of their ability. The situation is begging for a catalyst that will empower CCGs and hold them to account in the work that they do. Your Lordships know that I have spoken often about the position of parents with young children in Hertfordshire who need palliative care. We saw a CCG close the respite care centre 100 yards down the road from my house without making arrangements elsewhere for these children. Eighteen months after the provision closed, the alternative beds have only just opened 20 miles away in Hertfordshire, but these beds do not in any way replace the ones that were closed. The standard of variation between the lowest and highest budgets allocated for some patients by CCGs is extraordinary. No patient deserves to receive care so lacking that it is not palliative care at all.

Focusing again on children and young people, the provision in the Bill regarding pharmacies is important. However, we remember that NICE has stated that children with life-limiting conditions should be cared for by multidisciplinary teams. Together for Short Lives has found through its surveys that across England this is sometimes, rarely or never the case. It talks about a number of other facilities but there is not time this afternoon to go through them all.

However, I want to point out one absolutely chronic problem for the children who require these services that has worsened considerably over the last six months. There is a major discrepancy between the services planned and funded between 8 am and 6.30 pm from Monday to Friday, and services commissioned to provide care outside those hours. Some 93% of clinical commissioning groups commission community children’s nursing teams but only 67% provide out-of-hours care. This has resulted in parents frequently having to call an ambulance to take their child to A&E—the last place these children need to be—to have their feeding tube reinserted. This is so short-sighted; it needs to be remedied.

Nikki Lancaster, mother to Lennon, who died nearly two years ago, said:

“Nine to five, my community nurses were amazing, but come five o’clock in the evening, you’re very alone. It’s a massively overwhelming responsibility keeping a child alive. When you’re out there on your own and you’ve got no support it’s hard—emotionally hard. If you were in hospital, it would be a consultant making those decisions. When you are at home, it’s you.”

Following the death of her son Lennon, Nikki Lancaster faced the other problem that bereaved parents in receipt of benefits face: she got absolutely no benefits from the day he died because they were all linked to his care. During the passage of the parental bereavement Bill, I specifically asked the Minister to talk to DWP to make sure there was comparable provision for parents who had had to give up work to look after their chronically or terminally ill children. That has not happened. So, while we celebrate the parental bereavement Act, there is unfortunately a cohort of parents who are still being left high and dry.

Like other noble Lords, I had a problem with Clause 2(4). I am grateful to the noble Lord, Lord Balfe, for his comments about mediation, which were excellent. Before I came into the Chamber today, I was thinking, “An ACAS for the NHS and patients”; the noble Lord absolutely got that point. The noble Baroness, Lady Butler-Sloss, has taken most of the wind out of my sails but, as somebody who has been a UNICEF trustee, I point out that Article 3 of the UN Convention on the Rights of the Child says:

“In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”

The problem with Clause 2(4) is that, no matter how loving the parents are, their views should not come before the interests of the children. That is why I very much welcome the family courts using children’s guardians to make sure that the voice of the child is heard, particularly in the case of very small children, who have no voice of their own.

Another, related issue, concerning teenagers, was briefly touched on. I am reminded of the importance of the Gillick competence. What do we do about teenagers, or perhaps even younger children, who could consent to and fully understand the medical treatment proposed? Which would come first—the Gillick competence or the relevant clause in the Bill? I am delighted that my noble friend Lady Jolly has proposed an amendment for Committee stage. I am not quite sure that I support it in its entirety; I do not believe that it passes my two tests of the UN Convention on the Rights of the Child and the Gillick competence. But I hope that the noble Baroness, Lady Finlay, will be open to discussing how we might best improve the Bill to ensure support and satisfaction for parents who are clearly suffering at an extraordinarily difficult time, and support for the rights of the child, which must always remain paramount.

I hope that this Bill will have further space in the Government’s schedule and, even if it does not, that it is sufficiently high up in the system. Please can the House authorities make sure that it is scheduled swiftly for Committee and subsequent stages? I hope the Minister can reassure us that there will be more than £25 million available for palliative care, and that the Government will take to heart the detail of this Bill in seeking to mainstream palliative care and ensure that it is available for absolutely everybody in this country who needs it.