Hospices: Funding

Lord Farmer Excerpts

Thursday 24th October 2024 Lords Chamber

Asked by

[Lord Farmer]

To ask His Majesty’s Government whether they plan to review how the state funds hospices.

[Lord Farmer (Con)]

My Lords, I thank all noble Lords contributing to this important and timely debate. Hospice care, which of course includes hospice-at-home care, began 60 years ago and is one of the UK’s greatest achievements. The first voluntary hospice in 1967 paved the way for the modern hospice movement, which spread across the UK and around the world. This movement has profoundly, and I hope permanently, changed how people are treated when they have an incurable condition.

Dame Cicely Saunders’s hands-on medical experience taught her the need for a dedicated place where end-of-life care could be provided. She pioneered and oversaw St Christopher’s Hospice in London where, I believe, my noble friend Lord McColl, the eminent surgeon and professor, who is in his seat today, also practised.

Voluntary sector beginnings are still very much in evidence, with many good partnerships between charities and the NHS alleviating much pressure on the latter and giving freedom to the former. A review of funding would find a highly variable model for hospices; some are run by the NHS, with large annual charitable grants from local friends of the hospice, and others are run by a charity that gets some funding from the NHS. A common hallmark is a holistic, bespoke and patient-centred approach that values their relationships.

Dame Cicely said:

“You matter because you are you, and you matter to the last moment of your life. We will do all that we can not only to help you die peacefully, but also to live until you die”.


We should not forget that all receiving hospice care are on the edge of eternity, and dying peacefully also requires spiritual palliative care.

Why do people matter until the last moment of their lives, and why should we spend scarce resources to help them live until they die? It comes down to human dignity, a word that occurs five times in the United Nations Declaration on Human Rights and refers to the special value of human beings. However, the way it is used needs to be teased apart as it can be deployed to argue both for and against hastening death. Logically, hastening death cannot mean the same thing as helping a sufferer live until they die. The American medical ethicist Daniel Sulmasy identified three different basic meanings of dignity. For time and simplicity, I will focus on the two that can end up being used antithetically to each other in debates over whether end-of-life care should focus on hospice care or assisted dying. Many will say, “But it’s not either/or” and I will come to that. Sulmasy describes intrinsic dignity as the worth or value that a person has by virtue of being human. It is the basis of human rights, equal across all people and, as he says,

“does not admit of degrees”.

Attributed dignity, on the other hand, is a value that we confer on others or ourselves and very much admits of degrees. People can have varying amounts of it, as it depends on the esteem in which they are held in their or other people’s eyes. Importantly, attributed dignity would not have any ethical basis or exist at all without its root in intrinsic dignity.

When those who support assisted dying argue that dependence, loss of control and their self-perception of being a burden diminish that sufferer’s dignity, they are referring to attributed dignity. Opponents of assisted dying do not downplay that threatened loss of attributed dignity but give primacy to a sufferer’s intrinsic dignity. They uphold the moral obligation to bolster their humanity to the utmost, regardless of double incontinence, uncontrolled dribbling and the like. They reduce as much as possible the suffering, but not the sufferer.

Assisted suicide and euthanasia turn a somebody into a nobody. Those who morally justify eliminating a human on the grounds of concern about their attributed dignity undermine the foundation of human rights—namely, respect for the intrinsic dignity and worth of human beings. This is the basis for palliative care and why hospices were set up in the first place. The philosophy of palliative and hospice care over 60 years rests on a sound and logical understanding of the relationship between attributed and intrinsic dignity. It is precisely because the dying’s sense of self-worth and significance can be so ruthlessly challenged when the end of life draws near that their intrinsic dignity needs to be just as, if not even more, ruthlessly reinforced.

Hospice and palliative care professionals’ central concern is to improve, sustain or slow down the loss of quality in a dying person’s life, and that quality is multi-dimensional. When they sense that they are experiencing unconditional love, perhaps for the first time in their lives, that quality might be priceless despite severe pain. In 2023, however, Quebec passed provincial law mandating that medical assistance in dying be available in all hospices. Not only is this one of many measures that bulldozed medics’ conscientious objections, but it is a warning that, down the line, hospices could lose any state funding that they receive if they are not willing to evolve into a completely different service.

Given the financial pressures on the hospice movement, and of course the wider NHS—I am sure that many speakers will articulate that very clearly—we really could be looking at a brave new world where choice for ordinary people to end their own lives today becomes necessity for them tomorrow. Poorer people and those from ethnic minorities already have far less access to hospices than wealthy celebrities and other elites. Yet, if these elites change the law, they will still have choices but might inadvertently narrow them down even further for the less well-off, if hospices and other palliative care begin to wither on the vine. This has happened in jurisdictions such as Canada that have introduced and widened access to assisted dying.

Earlier this year, a report by the All-Party Parliamentary Group on Hospice and End of Life Care found that many hospices and the essential support they provide to dying people, their families and the wider health system are already in funding famine. The Health and Care Act 2022 legally requires integrated care boards—ICBs—to commission sufficient palliative and end-of life care for their population. However, the report found that the funding that hospices receive from ICBs still varies significantly across the country, and hospices describe it as “stubbornly insufficient” and “flat”, while costs rise. Where hospices had seen a change in their funding following the change in law, this had been for the worse, with some reporting a deterioration in funding from commissioners.

Notwithstanding the high value that many hospices place on the independence that flows from being mainly or partly charitably funded, will the Minister explain what her Government will do to ensure that ICBs uphold the Health and Care Act in this important regard? Further, what progress are they making to implement recommendations of the APPG report, particularly the development of

“a national plan to ensure the right funding flows to hospices”,

requiring a review of the state’s own role and responsibilities?

I will finish with an observation from a hospice matron with 20 years’ experience in end-of-life care. She has found that a decision about how someone wants their life to end taken when they were still well, or not too ill, can change when faced with the nearness of death. Paradoxically, the human spirit, she says, often wants to fight on. At present, and most thankfully, hospices facilitate that choice to fight. Will this Government commit to sustaining that choice, and improving how it is delivered, as long as it is within their power to do so?

Support for Infants and Parents etc (Information) Bill [HL]

Lord Farmer Excerpts

2nd reading
Friday 6th September 2024 Lords Chamber

Moved by

[Lord Farmer]

That the Bill be now read a second time.

[Lord Farmer (Con)]

My Lords, a vast amount of evidence unambiguously points to how critical the first 1,001 days of life, from conception to age two, are to the health, well-being and opportunities of children throughout their lives. Those days are also incredibly stressful for the vast majority of parents. Is the baby feeding properly? Is she putting on enough weight or too much weight? Why will she not stop crying? Is she sleeping too much? What am I doing wrong? What should I be doing? What information can I rely on? Why are we arguing so much? These questions are typical during those early days after a baby is born. This is therefore a vital stage of family life to support.

I know that one of this Government’s key missions is to turbo-boost opportunities for babies, children and young people. Parents are a key means of achieving gains in this area. Being child focused requires being parent and family focused, as I am sure they are aware. Finnish research shows that the bond a parent has with their child is the most potent and all-consuming form of love. Using MRI scans, researchers could see how feelings of parental love provoked the strongest level of brain activity and fired up the largest number of regions within the brain, sparking areas untouched by other forms of love. Support to harness, encourage and strengthen that parental love, also known as kin altruism, complements the clinical support that everyone needs when a baby is born and is the heart of the intent of this Bill.

In outlining the Bill, I declare my interest as a guarantor of FHN Holding, the not-for-profit owner of the Family Hubs Network Ltd. Vital though they are, GPs and health services cannot do it all. NICE reports that in the first year after birth, around 15% to 20% of women and possibly one in 10 men experience depression and anxiety. This is frequently missed or undertreated in general practice. The risk is greater if new parents are isolated, or relationships are not good between parents. Many break down in these early days. These non-medical issues have massive knock-on effects on mental and physical health, requiring a holistic and whole-family approach. My interest in the Bill stems from an awareness that many fathers are treated as incidental in the antenatal and postnatal periods, yet they are often the mainstay of support to the new mother and will, of course, be of considerable importance to the growing child.

A new joined-up and continually improving Start for Life offer was the focus and first action of Dame Andrea Leadsom’s early years healthy development review. This reported in March 2021 and named a welcoming family hub as the place where families could access those Start for Life services. Although much support and many services were available to new parents, her review established how hard it is for families to access information about what is available so that they can draw on it when they need it most.

Moreover, access to help is often inconsistent across the country. For example, great ambitions over several decades to increase breastfeeding will be constantly thwarted if parents do not get the support and information needed to keep breastfeeding beyond the earliest days, when extreme tiredness, pain and mastitis often set in. Baby tongue-tie is another issue, but many must go private to resolve it or for accessible advice. Many go online for help, without knowing how reliable that will be. But now, thanks to the family hubs and Start for Life programme, mothers in Derby, for instance, have support from breastfeeding experts and from each other in their local family hub. Peer support can be decisive for women to keep breastfeeding. This is one of the five named services that the early years healthy development review said should be universally available to support parents and carers and to ensure babies’ sound cognitive, emotional and physical development from pregnancy to age two.

But, as the 2023 progress report from this review points out, just providing better services does not go far enough: all families need to know what support is available to them and be able to access it easily. Funding was provided to ensure that expectant parents in the 75 eligible local authority areas receive a physical copy of their local Start for Life offer and can find it online. However, without the Bill, which simply and modestly requires all local authorities to publicise their Start for Life offer to all new parents, future funding is not guaranteed.

The Start for Life offer is information on services that a local authority is aware are available in its area for infants, parents or carers of infants, and prospective parents or carers, provided by or on behalf of public authorities. The named services in the Bill are maternity; health visiting; services promoting positive relationships between infants and their parents or carers; mental health; and breastfeeding and other infant-feeding services. Local authorities should also provide additional information on other services as appropriate. The Bill includes a regulation-making power so that the Secretary of State can include information on other specific services in the future. This future-proofs the Bill by ensuring that services that become indispensable are also systematically included.

The transformation fund for 75 local authorities, mentioned earlier, is allowing much innovation and good practice to emerge. This could eventually become universal. For example, family hubs in Bishop Auckland in County Durham have begun to offer birth registration to make this process easier for new parents, starting with just one day a month—but this could grow with demand. There have been many calls over the years to make this standard across the country. The Bill introduces a further duty on the Secretary of State to publish guidance to local authorities relating to those duties. Current guidance is non-statutory and does not include the learning from the Government’s family hubs and Start for Life programme, because evaluations from these have not yet been completed.

Finally, the Bill requires the Government to publish an annual report that sets out information about support being provided in England for infants, their parents and carers—and prospective parents and carers—as well as outcomes. Certainty about what can reasonably be expected and where it can be accessed makes a great difference during a phase of life when very little is certain and everything is being experienced for the first time. Everyone wants to enjoy this period when a new baby comes, but not knowing where to find help if things go wrong puts a major dampener on that.

Information is vital, which is why we need family hubs right across the country so that parents can access that joined-up early support to help them overcome difficulties and build strong relationships. Family hubs do not replace children’s centres. Many local authorities still run these nought-to-five facilities and integrate their work into the family hub network of buildings and services across an area. Family hubs do not deliver everything but are the access and connection points for families of children aged nought to 19, and up to 25 where there are special educational needs. They draw together all the family support available, which combats fragmentation of help and costly duplication.

Many family hubs in Essex provide paediatric healthcare that would otherwise be delivered in hospitals far from the community, as well as inoculations and oral health drop-ins for children aged nought to 19. Westminster includes GP clinics in family hubs so that families have access to a wide range of other support. GPs report how working in this way facilitates early intervention, holistic practice and a better grip on the myriad determinants of health.

Family hubs also draw in support provided by faith and other community organisations, in which parents place a high level of trust. Relationships are key to how they function. Family hubs in North Tyneside and Camden, among many others, adopt a “barefoot professional” model, which recruits local people from communities of greatest need and who have experienced poverty or family difficulties. Through peer-to-peer learning and appropriate supervision and support from the family hub, their ability to overcome adversity becomes a transferable skill set.

For family hubs to be sustainable, they need to draw in and on the local community and build prosocial peer support networks. Research has shown that these are invaluable to health visitors and other professionals, and certainly do not replace them—but they can never on their own address the problems of isolation I mentioned at the beginning. University College London research proves that well-functioning relationships are themselves health assets, and the relationships that parents have with their children can be most powerfully so. I reiterate that information about where help is available supports these from the earliest point before birth and afterwards, giving all children the best start for life. I beg to move.

--- Later in debate ---

[Lord Farmer (Con)]

My Lords, I should start by welcoming my right honourable friend Dame Andrea Leadsom. I was not aware that she was on the steps of the Throne, and I welcome her here today to hear this debate. Obviously, I am saddened and disappointed by the Government’s response. However, I want to thank all noble Lords who have contributed to this debate, which has been wide-ranging; a lot of deep thought has been put into it and there has been agreement from all sides of the House on this matter.

In answer to the Government, we are talking about information. I understand the Government’s argument that they are working on a comprehensive plan for families and children for addressing poverty among children, but this is just a small point about getting information out, and information can deal with a lot of problems quite quickly. The noble Lord, Lord Bird, talked about poverty, and we have heard from other people. I have found throughout my life that poverty is caused by a lack of information. When we learn something, it helps us to deal with it. I ask the Government, if they are not supporting this Bill, that they might nevertheless instruct departments to encourage councils to improve information given to families on what services are available for the whole natal area—prenatal, perinatal and antenatal. It seems to me that it would not be that difficult without a statute to get departments of government to see this as important, because lack of information is causing so many problems—I come back to the poverty issue as well.

I thank all noble Lords. I was very honoured by the noble Lord, Lord Blunkett, saying that it was a granddaughter of Sure Start. I should mention that I once attended a Labour conference in Brighton on a very blustery day. I was placarding a meeting about family hubs. I was being blown about all over the place and all of a sudden I heard, “Lord Farmer, what are you doing in enemy territory?”. I turned around and there was the noble Lord, Lord Ponsonby. I said, “Family hubs, family hubs. Building on Labour’s Sure Start centres.” That is what family hubs are doing, so I really press that point.

I thank noble Lords for some very good contributions; I hope that the Government will pay attention to them and move quickly, even in this area. I would be very happy to work with the Minister. I thank her for the meeting and the advice. Obviously, it is disappointing—this is a simple Bill that could be enacted quite quickly and would bring immediate benefit—but things are as they are. With thanks to all noble Lords who contributed, I would still like to press on.

Bill read a second time and committed to a Committee of the Whole House.