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.

Covid-19 Vaccination: Coronary Disease

Lord Farmer Excerpts

Tuesday 23rd April 2024 Lords Chamber

Asked by

[Lord Farmer]

To ask His Majesty’s Government what assessment they have made of the connection between COVID-19 vaccination and increased prevalence of coronary disease.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Markham) (Con)]

The Government are taking action to tackle cardiovascular disease and coronary heart disease, including through supporting improved uptake of the NHS Health Check England cardiovascular disease prevention programme. There is no evidence linking Covid-19 vaccines to increased levels of coronary heart disease. All vaccines used in the UK are authorised only once they have met robust standards of effectiveness, safety and quality set by the UK independent regulator, the Medicines and Healthcare products Regulatory Agency.

[Lord Farmer (Con)]

I thank the Minister for his reply. A considerable number of cardiologists, other medical practitioners and scientists have raised concerns about a link, especially among younger people, amid a pervasive sense of a lack of transparency. A reluctance to disclose the full gamut of information sits uneasily with the Government’s ongoing encouragement for people to get vaccinated. To resolve this, can the Government at least publish data on cardiac deaths in the ever vaccinated and never vaccinated by age group for 2022, 2023 and onwards?

[Lord Markham (Con)]

I thank my noble friend for this question. The ONS has provided this information and made it available for research purposes to make absolutely sure that we get to the bottom of this issue. For the understanding of noble Lords, every medical vaccine has side-effects, but the MHRA has investigated this, and the side-effect that people are worried about is heart inflammation. One to two people per 100,000 who have had a vaccine experienced side-effects, but, for people who have had Covid, it is 150 per 100,000. Having these vaccines is a much safer route to go.

United Kingdom: Future Pandemics

Lord Farmer Excerpts

Monday 16th January 2023 Lords Chamber

[Lord Markham (Con)]

Given the detailed nature of the question on sequencing, it probably deserves a detailed response. I will happily write on that. The 100 Days Mission—to deploy effective diagnostics, therapeutics and vaccines within 100 days—is all about having UKHSA ensure that we have a preserved capability to act when we need to.

[Lord Farmer (Con)]

My Lords, in any future global health emergency, legitimate concerns—such as effects on mental health, education, aspects of healthcare, and the psychological side-effects of terrifying people into self-isolation—about measures must not be silenced. They will be extensively aired anyway, in online echo chambers, and amplified, typically with much ignorance of the facts and inadequate nuance. Will the Government ensure that concerns are debated in public and by senior leaders in society and government?

[Lord Markham (Con)]

I agree with my noble friend that some of the lessons learned from all this are around consequences of lockdown that we had not quite imagined. Clearly, the impacts on mental health are impacting us to this day. We need to make sure that we are learning all those lessons, so that we do not walk into situations in the future where we put in lockdowns without fully considering the impact on the whole of society, including the mental health consequences. That is what the inquiry is about.

Primary and Community Care: Improving Patient Outcomes

Lord Farmer Excerpts

Thursday 8th September 2022 Lords Chamber

[Lord Farmer (Con)]

My Lords, it is a pleasure to follow the informative and thoughtful speech of the noble Lord, Lord Kakkar. I too thank the noble Lord, Lord Patel, for securing what is a very timely debate, given the new Health Secretary’s pledge to put patients first, and the opportunity to talk about how community-based care can improve patient outcomes.

I declare my interest as director and controlling shareholder of the Family Hubs Network Ltd, which advocates for family hubs and advises local authorities on how to establish them. Family hubs are well-placed to deliver a broad range of paediatric physical and mental health services that are more accessible for families. The noble Lord, Lord Hunt of Kings Heath, mentioned accessibility. That accessibility, and the integration of health with other family support in a non-stigmatising and parent-educating environment, has the potential to transform outcomes. Paediatric health needs that are psychosocial and practical require a whole-family approach. Moreover, delivering them in hospital settings a couple of bus rides away from where people live makes it far less likely that children will attend.

Watson and Forshaw’s study found that a third of all paediatric hospital appointments were missed over a six-month period. Even more concerningly, a third of those children who were “not brought in” by their parents were known to social services and therefore likely to come from families already struggling greatly with the basics of child-rearing. Distance from home contributes to the social gradient in health and perpetuates the inverse care law that those with the greatest healthcare needs have the poorest access to that care.

Accessibility matters greatly if services are to be delivered for the convenience of hard-pressed parents and their children, rather than the system. I welcome family hubs’ inclusion in the statutory guidance for the preparation of integrated care strategies. These are described as

“a way of joining up locally and bringing existing family services together to improve access, connections between families, professionals, services, and providers, and putting relationships at the heart of family support. The Family hub model brings together services for families with children of all ages (0-19) or up to 25 with special educational needs and disabilities … with a ‘Start for Life offer’ at its core.”

Otherwise, access was not prioritised in this guidance, but it should be.

A provider of healthcare services in one county, contracted to provide similar services in two integrated care systems and in two very different ways, told me:

“In one ICS, our contract to deliver children’s community health provision gives us the autonomy to deliver in the community and close to people’s homes. Where we can, we deliver this in Family Hubs so we can provide education for the parents, early help and appropriate expertise. We provide allergy, continence, perinatal mental health, speech and language and other support, all of which prevents unnecessary attendances in GP practices and A&E. However, in another ICS where we are sub-contracted by an acute hospital, we are required to deliver the same services from a hospital setting. The parent and patient experience differs significantly from one that is educated, empowered and supported to one that is the recipient of a treatment.”


Moving on to how health is described in the DfE’s Family Hubs and Start for Life Programme Guide, the lens always seems to be the very early years. Reference is made, for instance, to

“a clinical setting such as a maternity hub”,

mental health is couched in terms of helping families receive appropriate support for their parent-infant relationship and the specific conditions mentioned, such as neonatal necrotising enterocolitis, infer babies’ health needs. This is an important start, and the Department of Health and Social Care is, at this point, mainly interested in family hubs as the place where start for life services can be delivered, but their potential is so much greater than that, as my earlier example made clear.

Can my noble friend the Minister let me know what encouragement DHSC is giving to the wider provision of health in family hubs? I ask because, at present, the Family Hubs Network and others have found a distinct lack of awareness of their potential to ease the load on health providers. Health professionals tell us that paediatricians at local hospitals still do not know about family hubs, but need to. They often see families with well-established problems, such as obesity and incontinence, which are best treated closer to home with regular contact with early-help practitioners in family hubs. Social prescribers and therefore local GPs, even in areas where there are flagship family hubs, are similarly unaware.

Hubs are also a better place to take on the non-health problems which consume so much of GPs time. In 2015, Citizens Advice’s report, A Very General Practice, itemised how much time GPs spend on various non-health issues and found, unsurprisingly, that 80% of GPs said that such demands cut into their time for meeting patients’ health needs. Citizens Advice called for non-health demands to be met in ways that free up GPs to focus on patients’ health, particularly where they require specialist knowledge. The top three non-health issues that patients raise during consultations could and should be part of the family hub offering: 92% of patients mentioned personal relationship problems, 77% problems with housing and 76% problems with work or unemployment. Only one-third of GPs felt they were advising patients adequately.

Family hubs already join up services, including housing and employment coaching, from a wide range of government departments. DWP runs reducing parental conflict programmes in family hubs, where it is easier and less stigmatising to access relationship support, particularly for low-income families. Similarly, the MoJ’s pilot family hub in Bournemouth links with the family court and enables separating parents to get help earlier, and avoid costly and adversarial court processes.

Last week, the Children’s Commissioner’s Family Review said that every government department should bring forward family-strengthening policies, led strongly from the top. Family hubs should be the key delivery sites for them and expand their remit, for example, to include better support when parents make child maintenance claims, measures to tackle rural loneliness and disadvantage and intergenerational opportunities. A Cabinet-level Minister needs to co-ordinate these across government, backed by the new Prime Minister. Liz Truss pioneered this in government when she commissioned my review into the importance of prisoners’ family ties to prevent re-offending and intergenerational crime. She has also promised to look at family taxation, so I am expecting great things from her.

The Children’s Commissioner also said how important family stability is for children and parents. Profound mental and physical health ramifications flow from family breakdown. In a major study of more than 43,000 children, clinicians said that family relationships problems are the most common reason children and young people access mental health services. Resolving them often requires a whole-family integrated approach that it would be better for the health service to deliver in family hubs rather than secondary or primary care settings, which necessarily individualise conditions. Reform to make this a mainstream, default approach, where appropriate, is urgently needed for better patient outcomes, but it requires leadership from government to divert the NHS away from its well-worn tracks. Will the Minister kindly arrange a meeting for us to discuss this further with his new boss?

Cannabis: Medicinal Use

Lord Farmer Excerpts

Tuesday 12th July 2022 Lords Chamber

[Lord Kamall (Con)]

Yes, but I should start by saying that I have been warned a number of times that it is inappropriate for Ministers to tell doctors and clinicians what they can prescribe. In certain cases, given that it has not been regulated as a medicine in this country, doctors can make an exception and ask for it to be prescribed on the NHS. They will go to their CCG—and now to their ICS—and ask for that. However, that has been agreed to in only a few cases.

[Lord Farmer (Con)]

My Lords, will the Government heed warnings from respected addiction psychiatrists in US states where cannabis has been legalised that medical marijuana acted as a Trojan horse to get recreational use in, that the upward trend in medical potency means that people get addicted, and that super-strength products are associated with a significant rise in cannabis-related psychosis? Are they aware that states are now tightening restrictions on cannabis prescribing, having previously liberalised it, not least given sharp increases in teenage suicides with marijuana in their systems post-mortem?

[Lord Kamall (Con)]

I thank my noble friend for his question and note his concerns. However, I think we should look at this in two ways: there is medicinal cannabis and there is recreational cannabis, and we must be quite clear on that. Some people clearly want to liberalise both. I cannot comment on my own particular views because I am conflicted on this, but what is really important here is that we take a cautious approach and look at the particular issue of medicinal cannabis. The MHRA is ready to regulate medicinal cannabis; it just needs companies to come forward and spend money on the trials.

Down Syndrome Bill

Lord Farmer Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Lord Farmer (Con)]

My Lords, I rise to support the Bill and congratulate my right honourable friend Dr Liam Fox, who is with us today, and the noble Baroness, Lady Hollins, on bringing it to this House. I also thank the Minister for his correspondence to me on this legislation, and I take this opportunity to congratulate him more widely on reaching the end of Report on the epic Health and Care Bill yesterday at 2.15 am, when I was with him. It was an early baptism of fire after entering this House, and a much prolonged one at that. The Bill and Front Bench teams, including my noble friends Lady Penn and Lord Howe, are also to be commended for their energy, stamina and courtesy—as, of course, are the Opposition Front Bench teams. It was a marathon.

I confess to mixed feelings about this Private Member’s Bill, despite its laudable aims, because with the mapping of the human genome, many other genetic disorders have come to light. Though not as common as Down’s syndrome, they are not incredibly rare “black swan” events in our population, although they can seem so to the individuals and families coping with them. As I understand it, the Bill seeks to educate the public particularly about the opportunities technology now avails individuals with Down’s syndrome to have a better and longer life than many realise is possible; to ensure that Down’s syndrome is properly considered in service provision across different sectors; and to plan for future impacts of longer life expectancy for people with this condition. All these aims are just as relevant to individuals with other genetic disorders, yet they can struggle additionally to those with Down’s syndrome because there is still so little public and clinical awareness of the ramifications of their chromosomal abnormalities, hence my ambivalence. What guarantees can my noble friend the Minister provide that the Bill will not widen this inequality further?

I will illustrate the complexity of what these genetic conditions can entail by focusing on the second most prevalent after Down’s: 22q11 syndrome, the APPG for which I am a vice-chair of. But there are of course others, such as Prader-Willi syndrome and Smith-Magenis, or 17p, syndrome. 22q syndrome is caused by a genetic deletion on the longer q portion of the 22nd chromosome, meaning a small part of genetic material is missing from the DNA in every cell of the body. It is the most common microdeletion syndrome in humans. In most cases, it occurs de novo in a child’s very early development, but it can be inherited. Doctors have struggled to diagnose it due to the very wide variety of symptoms and conditions which arise from the same missing genetic material. It was only relatively recently discovered to be the one root cause for multiple diagnoses, including DiGeorge syndrome and velocardiofacial syndrome.

22q manifests itself in nearly 200 different physical and mental health issues spanning the cognitive, endocrinological, behavioural, immunological, cranio-facial, sensory and cardiac. That can mean hearing and speech problems, facial abnormalities, scoliosis, calcium deficiency, eye problems, seizures and constipation, with poor development of various bodily “tubes”, as I will describe in a moment. Some 50% to 85% of those with 22q have congenital heart disease, 10% have cleft palate, 30% have kidney anomalies, 1% have severe immunodeficiency and 60% to 90% have psychiatric disorders.

One family whose baby was diagnosed within a year of his birth describe 22q as the Pandora’s box, because they were never sure what new medical nasty would emerge. He nearly died at five days old because the end of his bowel had not formed properly, and sepsis took hold when he could not void meconium. Thankfully he survived, but twice a day the exhausted parents had to wash out his bowel using tubes and suction; I will not dwell on that. After several months, he was admitted for an operation on his bowel, but the anaesthetist was concerned that his throat was as narrow as a newborn’s. Basically, it and his larynx had not formed properly either, which explained why he never cried but made slightly strangulated coughing noises.

Again, thankfully, he was admitted to Great Ormond Street Hospital, where they widened his throat and removed the laryngeal web which would have prevented him ever speaking. Although his parents had to travel a long way within the UK to get there, they met families who had come from other countries for the same operation, because Great Ormond Street is a centre of excellence. We cannot take such provision for granted. His heart and the vessels to and from it were also giving the many medics looking after this little boy cause for concern, and they decided to do some genetic testing. To cut a long story short, he was diagnosed with 22q.

He continues to risk becoming dangerously ill when there are colds about, due to his compromised respiratory system, so the pandemic was a tough time for his family, and he will probably always have to attend a special school because of cognitive delay. Facially he looks quite normal to the untrained eye, but his life and his parents’ experience have been anything but.

Every 22q child presents in a completely unique way, and many do not get diagnosed until much later in life because of the variability in severity. Hence one of the top asks from Max Appeal, a support group for parents with 22q children, is that 22q be part of the newborn heel-prick test. A 2017 study in the Journal of Clinical Immunology concluded that

“the clinical characteristics, diagnosis, management, and treatment of 22q11.2 Deletion Syndrome have been shown to meet the criteria for new-born screening programmes and support the need for earlier diagnosis.”

Far less prevalent conditions such as cystic fibrosis are included, but they, like Down’s syndrome, are in the mainstream of medical consciousness. Without screening it is very hard to determine prevalence accurately, although some studies estimate that one in 2,000 children are born with it, which would make it half as common as Down’s syndrome.

I mentioned my ambivalence, but my optimistic ambition for the Bill is what has been mentioned already: that it will provide an awakening for the Government and the public to this world of genetic disability. The medical establishment also has some catching up to do although, thanks to grass-roots pressure from organisations such as Max Appeal, significant progress has been made in treatment and raising awareness, which is of course what I am trying to do right now.

What guarantees can the Minister give that this Down Syndrome Bill will lead to a floor of provision for genetic disorders on which to build, not a ceiling on our aspirations for helping these unique and uniquely precious individuals and their families cope and indeed flourish despite the lifelong implications of immutable chromosomal disorders? In the meantime, I welcome the Bill and support its passage through the House.

Health and Care Bill

Lord Farmer Excerpts

Lords Hansard - Part 1 & Report stage
Thursday 3rd March 2022 Lords Chamber

[Baroness Tyler of Enfield (LD)]

I support and very much welcome government Amendments 36, 157 and 185 in response to the powerful debates in Committee on children’s health, safeguarding, data-sharing and particularly the case for a unique identifier for children, on which I put forward an amendment in Committee. I thank the Minister for engaging so fully and positively on these issues and for the various meetings which led to these amendments being tabled. It is also very welcome that Amendment 36 includes children in the Bill, which so many of us have argued for.

On the unique identifier as a means of identifying children in touch with multiple services, aiding safeguarding and promoting joined-up support, I strongly support the government amendment to lay a report before Parliament on information sharing and on a single unique identifier for children. That is a real step forward, and it is clear that the Government acknowledge that there are serious and distinct challenges with sharing relevant information across not just children and social care sectors but others too, including schools and the police.

There is always more to do, so I will never be 100% satisfied and I note that the amendment as tabled does not actually commit the Government to any specific timed action beyond publishing the report. Therefore, it was good to hear the further assurances that the noble Lord, Lord Kamall, gave at the Dispatch Box. I think I heard him say clearly and unequivocally that the Government are committed to developing plans not just to look at the case for but to adopt a single unique identifier for children. I think I also heard a commitment to developing a set of cross-government proposals for implementing that, and then, I hope, acting on the findings of this report within a defined timescale. If the Minister could reiterate those commitments, I would be extremely grateful. I would also welcome a commitment to involving those organisations representing children and young people, who have been so much a part of our discussions and debates, as part of the production of that Bill.

I support Amendment 59 from the noble Baroness, Lady Hollins, which I signed, requiring NHS England to assess annually how well each ICB is doing in meeting the needs of children and young people; it provides much-needed accountability and transparency, particularly in relation to the new and crucial safeguarding responsibilities that ICBs are taking on. I welcome the statutory guidance, which I know the Government intend to produce, on having a children’s lead on the board of every ICB. That is really important.

I support the suite of amendments in the name of the noble Lord, Lord Farmer. I will leave him to set out the case for them, but I agree that family hubs play a really important role in improving early intervention services, helping integration and data sharing among public services and involving the voluntary sector. Importantly, and germane to this Bill, that includes children’s health services, which are often better delivered in community settings with other family support services. I particularly support Amendment 75, which calls for each local authority to provide a family hub. That is central to a national rollout of family hubs. which I would like to see at the very core of a national strategy on child vulnerability.

[Lord Farmer (Con)]

I start by thanking the noble Baroness, Lady Tyler, for her support; it is very much appreciated. She has been a doughty warrior accompanying us along this path for many years.

I will speak to my Amendments 64, 66, 68 and 75 and I thank the Minister for the meetings I have had with him and the Bill team to hear his concerns, particularly around being overprescriptive.

Amendment 64 simply replaces “may” with “must” and thereby requires integrated care partnership strategies to lay out how health-related services can be more closely integrated with health and social care. In Committee, I said that “may” made that aspect of integration voluntaristic, and I would be grateful if the Minister could explain why, as I am genuinely mystified, the ICP is at present only invited to do that.

Amendment 66 has been revised after the discussions mentioned earlier. I propose adding new subsection (5A) to Clause 116ZB to specifically invite ICPs to consider how family help services, including those accessed through family hubs, could be more closely integrated with arrangements for the provision of health services and social care services in that area. I avoid using “must” in that case, because it could place an overly prescriptive requirement on ICPs. I also avoid mandating the use of family hubs. They are simply mentioned as an important potential access point.

I recognise and applaud the many ways that the Government have improved the Bill with respect to children’s health. However, I explained in Committee that many children’s health needs are psychosocial: they need practical, not just medical, solutions and addressing them needs a whole-family approach. That is also particularly important when parents experience drug and alcohol problems, which can affect their children almost or as much as the parents themselves.

Early family help commissioned by local authorities therefore needs to be integrated with health as well as many other departments of government. Family hubs are mentioned in my amendment, not prescriptively but as the model that could enable that to happen. In Committee, I described how DWP’s Reducing Parental Conflict programme, DLUHC’s Supporting Families and the MOJ’s private family law pilots all looked to family hubs as an access point for those who need this support. The Bill could and should help to make that model proliferate to benefit families. As it operates according to principles, not an overly prescribed framework, it can be tailored to local need, including by drawing in the bespoke work of the local voluntary and community sector. Historically and currently, health services have had a poor track record in integrating with local government and wider partners. The Children’s Centre movement frequently lamented the lack of engagement with health. The opportunity the Bill provides to avoid that pattern being repeated should not be missed.

My Amendment 66 gives meaning to the phrase “family help” and points towards an amended Schedule 2 to the Children Act 1989 to explain what is meant by “family hubs”. In Committee, I explained that

“services which improve children’s lives through supporting the family unit and strengthening family relationships to enable children to thrive and keep families together”

is the independent care review’s working definition of “family help”. This is not a concept to be set in concrete in the lead reviewer’s final report, but simply one that is qualitatively different from “family support” in local authority usage. The latter leans towards late-stage statutory child protection, which ideally prevents children entering care and is far from the early help so many parents need.

Finally, my Amendment 75 necessarily changes how the Children Act 1989 refers to family help infrastructure to reflect more closely the way it has developed. It has also been adjusted since Committee to avoid mandating local authorities to provide family hubs, which would have significant cost implications, ultimately for the Treasury. As a result of my amendment, new Schedule 2(9) to the Children Act would state:

“Every local authority shall provide such family hubs as they consider appropriate with regard to local needs in relation to children and families within their area.”


“Family hubs” means an access point where children, their parents, relatives and carers can access advice, guidance, counselling or paediatric health services as well as occupational, social, cultural or recreational activities. This removes the anachronistic reference to and description of “family centres”. These were never consistently implemented in the way probably envisaged by the draftsmen of the 1989 Act, although children’s centres did emerge to fulfil many of their purposes in response to research on the importance of children’s early years.

To address the Minister’s concerns that putting family hubs into legislation would introduce unhelpful rigidity and prescription, I end by making an analogy with the Supporting Families programme. This does have a legislative underpinning, but the early troubled families programme from which it evolved provided principles for a tried, tested and consistent way of working, illustrated these with case studies and supported local authorities to develop their own bespoke approaches to that way of working. The DfE is taking a similar non-prescriptive approach in its family hubs framework, which emphasises principles—namely, access, connection and relationships—and avoids determining how local authorities implement these. Just as the Supporting Families programme has developed but is still recognisably the same way of working launched as “troubled families” 10 years ago, I and others anticipate the same continuous improvement trajectory for the family hubs model or way of working.

Family hubs are now official government policy, backed by a £130 million commitment, a major evaluation programme and decades of supportive research. The model is not prescriptive but enabling and supported by many local authorities and those designing health systems. I would be grateful, in conclusion, if the Minister would explain, after these assurances, why this important social infrastructure, the fruit of 30 years of reform, which builds on and extends Labour’s legacy of Sure Start centres, has no place in the Bill.

[Baroness Walmsley (LD)]

My Lords, I congratulate the noble Lord, Lord Farmer, on his efforts to keep the issue of prevention and early intervention before us: it is vital. I also thank the Minister for the government amendments and the way he has engaged with us over this issue. I was particularly pleased to hear him use the word “action” at least two or three times in his introduction to the amendments. I congratulate the noble Baroness, Lady Hollins, and my noble friend Lady Tyler, on all they have done but in particular for pointing out, in their Amendment 59, that there could be a bit of a gap here. We have the CQC, which will inspect individual healthcare settings and, under the Bill, it will also have to see how the new integrated care system is working, but there is no guarantee that it will see it as part of its duty to see how that system is working for children. This is something that the NHS could do through the report called for in Amendment 59.

--- Later in debate ---

Moved by

[Lord Farmer]

64: Clause 21, page 30, line 1, leave out “may” and insert “must”
Member’s explanatory statement
This amendment and others to Clause 21 and Schedule 4 in the name of Lord Farmer would require integrated care partnerships to consider how to integrate health-related services into the provision of health and social care services, and specifically family help services, as relationships are recognised by research as a “health asset”. “Family help” is defined in accordance with the Independent Care Review’s starting definition. ‘Family hubs’ are named as key potential sites for delivering integrated paediatric health and family help.

[Lord Farmer (Con)]

My Lords, I want to respond to Amendment 64.

[The Deputy Speaker (Baroness Pitkeathley) (Lab)]

Amendment 64 has already been spoken to.

[Lord Farmer (Con)]

But I did not withdraw it. I was waiting for the response; nor did I have a chance to say whether or not I would divide the House.

[Baroness Penn (Con)]

The noble Lord is correct that he can speak to Amendment 64 and, in doing so, move it, but he should then choose to withdraw it or test the opinion of the House.

[Lord Farmer (Con)]

I thank the noble Baroness, Lady Tyler, and other noble Lords, for their support, and I thank the Ministers for helping on the direction of travel for family hubs, and for family hubs being included in statutory guidance for integrated care services and bespoke guidance specifically covering family help. However, we are talking about the bronze medal position. Gold medal is primary legislation, silver is secondary, and statutory guidance is bronze, although at least we are on the podium. As the Minister said, this is ongoing. They are awaiting the review of children’s local care evaluations from 75 local authorities. I will be with them on the journey. That is all that I can say, as it is ongoing.

Amendment 75 still presents a possible risk of imposing an additional burden on local authorities in their delivery of local services. Given that I have mirrored what the Children Act 1989 says regarding now defunct family centres, the Government should really consider amending this themselves if it inappropriately burdens local authorities. In any event, I welcome the Government’s movement. I beg to withdraw my amendment.

Amendment 64 withdrawn.

Health and Care Bill

Lord Farmer Excerpts

Lords Hansard - Part 2 & Report stage
Tuesday 1st March 2022 Lords Chamber

Moved by

[Lord Farmer]

19: Clause 20, page 16, line 12, at end insert—
“14Z32A Duty to prevent illnessEach integrated care board must exercise its functions with a view to preventing the development of poor physical and mental health, including by ensuring health services are available in a community setting where possible, in order to improve access.”Member’s explanatory statement
This amendment would ensure the prevention of ill-health was prioritised including by making health services available closer to patients’ homes to lower barriers to access.

--- Later in debate ---

[Lord Farmer (Con)]

My Lords, in reintroducing this amendment, I want to pick up on comments made by my noble friend Lord Kamall in Committee. He said that he agreed with “the spirit” of my amendment and had been reassured since becoming a Health Minister by

“the number of people in meetings who have said that they want to move towards a focus on prevention.”—[Official Report, 20/1/22; col. 1811.]

Although the duty to improve continuously the quality of services and obtain appropriate advice includes those in connection with prevention, this in no way guarantees that it will be raised up from the current low bar relative to treatment.

I do not think it misuses the important concept of levelling up to apply it in this context. The thrust of my amendment is to level up the emphasis on addressing the precursors of illness with delivering care while it runs its course, as well as with what comes after, whether that is its sequelae, rehabilitation or palliative care. After all, the NHS is the National Health Service. Keeping people healthy and preventing ill health should be the first duty of integrated care boards, thereby fulfilling the purpose of the NHS. The chronic waiting lists and ever-increasing costs, which seem never to end, both flow from a culture that is reactive rather than proactive.

As my amendment states, a duty to prevent could mean, in many contexts, community health provision. A reverse Beeching for healthcare would help to nip in the bud any developing conditions and, when health needs have family implications, enable them to be treated alongside and integrated with early family help. Prohibitively long journeys to hospitals, in respect of which ICBs might choose to integrate health and health-related services to reduce inequality of access, will work against this prevention imperative, hence the need to give it primacy. A couple of examples will be helpful here. I will touch on how preventing, for example, childhood obesity and mental ill health will in no small part require improving family relationships, which is best done in the community.

The Leeds child healthy weight plan, established and led by Public Health England but multiagency in approach, focuses on prevention as it can be more difficult to engage families and see improvement once problems arise. Families on the plan took healthier steps in both the consumption of fruit, vegetables and sugary drinks, and physical activity, but they also reported a reduction in screen time and increased parenting confidence. Leeds has seen child obesity rates among reception-age children decline significantly as a result, particularly among the most disadvantaged children, over a period when similar cities and England have seen no change in this key area.

Secondly, in a recent major study of more than 43,000 children in children and young people’s mental health services, over half cited family difficulties, which were the biggest presenting problem. Again, community-based family support is vital for preventing mental ill-health.

In concluding—as noble Lords can see, I have not spoken for long—I want to stand back from this. The tragic events in eastern Europe indicate the need to spend more money on defence. Where will it come from if we do not cut our cloth differently? The prevention of ill health has to be a part of that. I beg to move.

[Lord Crisp (CB)]

My Lords, I will speak to Amendments 33, and 37 to 54. I thank the noble Lords who have added their names to those amendments.

There is a very simple point here. The purpose of these amendments is to make sure that primary care is as highly influential in the new system as, and not the poor relation of, NHS trusts and NHS foundation trusts. It is vital for the whole success of the entire Bill moving forward that primary care is able to play its proper part in the future. It is therefore very good indeed that the Bill includes having a representative for primary care on the board of ICBs—the integrated care boards. However, I will turn to the problem, which is exemplified by the first of these amendments.

Amendment 33 refers to a passage in the Bill which says:

“Before the start of each financial year, an integrated care board and its partner NHS trusts and NHS foundation trusts must prepare a plan setting out how they propose to exercise their functions in the next five years.”


There is no mention of primary care in that, which is where the amendment comes in, adding the words “and primary care”. It is worth just noting that this is an entire reversal of what is in a sense the current situation, where primary care has a big role within planning and the acute and NHS trusts more generally have a much lesser one. So this is a very big change. My first question to the Minister is that it would be helpful if he would explain why NHS trusts and foundation trusts are being treated differently from primary care. Alongside that, why and how will he make sure that primary care will be able to function as it should do in being equally influential with the other sectors?

I have already outlined the reasons for this in very broad terms, but I will pick out three or four points. First, it is so that their contribution can be made. Primary care is not just about what is happening in the out-of-hospital sector; it also has a significant role in what should be happening in the hospital sector and, of course, to pick up the point made by the noble Lord, Lord Farmer, it has a major role in prevention as well. Secondly, this is about morale. Primary care has very poor morale at the moment, and anything that seems to downgrade its role is important.

Thirdly, it is about messaging and the priority that is being given to the different parts of the system. Fourthly, there is another point here. Over the last—I guess—25 years, a number of GPs in particular have become quite adept at planning, thinking about the future and commissioning and so on. There is a great wealth of experience there, and that is experience of planning not just for primary care but for health services, and indeed prevention more generally. Then, of course, as I said at the beginning, this is about the direction of travel.

I am pleased to say that I have had some good discussions with the Minister, and indeed with officials, and I look forward to hearing what the Minister will be able to say in response to this. My request, and that of the noble Lords who have added their names to the amendment, could not be simpler. Why is it intended to treat NHS trusts and NHS foundation trusts differently, giving them apparently a more central role, and how will the Minister give the same level of influence to primary care as the Bill does to these other bodies?

--- Later in debate ---

I have just realised I did not directly answer the question from the noble Baroness, Lady Walmsley, about the experience in London and patients being sent elsewhere. I hope the noble Baroness will allow me to investigate further and write to her. On the other issues I hope I have been able to provide some reassurance regarding noble Lords’ concerns. I hope that noble Lords will feel able not to press their amendments when they are reached.

[Lord Farmer (Con)]

My Lords, I thank the Minister for his fairly comprehensive reply. I also thank many noble Lords for their contributions. I think the Minister’s description of the debate being wide-ranging was correct. It was noticeable also that there was a degree of sadness and regret that it was the end of the day and that this important subject could not have a longer period for debate. The whole area of prevention and primary care, and of named GPs, which my noble friend Lady Hodgson was talking about, is an area of early activity in the health of people which needs to be more debated. This debate has shown that the Bill has not given it the proper emphasis that one would want; the equality with the acute care that we have heard about.

It is late in the day, and I certainly do not want to detain the House, but I thank all noble Lords for their contributions. I hope that the Ministers can take this away and that if to a certain extent they are behind the curve on this front bit of health need, they will muse on it and improve the Bill, as the Minister said he intends to do. I thank noble Lords again and beg leave to withdraw my amendment.

Amendment 19 withdrawn.

Covid-19: Lockdowns

Lord Farmer Excerpts

Wednesday 9th February 2022 Lords Chamber

[Lord Kamall (Con)]

If the noble Lord would like to write to me with details of that paper, I would be happy to share it with other noble Lords.

[Lord Farmer (Con)]

My Lords, 54 health professionals have urged the Commons Public Administration Committee to conduct an inquiry into government use of covert psychological strategies, particularly in Covid messaging, which raise significant ethical issues, including the need to obtain consent. What is the Government’s response to growing evidence of fear inflation and social division due to the equating of compliance with virtue and use of peer pressure to ensure conformity with lockdown and other Covid restrictions?

[Lord Kamall (Con)]

I thank my noble friend for giving me advance warning of his question. The British Psychological Society’s ethics committee has been approached on this topic and has provided a response that has been published in online articles by the authors of the recent letter. Overall, the BPS concludes that it believes that the contribution of psychologists in response to the pandemic was entirely consistent with the BPS code of ethics and conduct, demonstrating social responsibility and the competent and responsible employment of psychological experience.