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?

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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.

Vaccination: Condition of Deployment

Lord Farmer Excerpts

Thursday 3rd February 2022 Lords Chamber

[Lord Kamall (Con)]

I agree with the sentiments expressed by the noble Viscount. Sometimes it takes the worst of times to bring out the best in people. It was an incredible response. It was also a very sad, emotional response. People lost loved ones, friends and relatives, and we were unable to contact people. I still have not seen my mother since January 2019 and my father died in September 2020, and I have not seen his grave. We have all been through incredibly emotional times and lost loved ones. On the fourth jab, we are continuing to review this—for example, we know that Israel has gone for a fourth jab. The briefings I get say that it is too early to tell whether there will be a fourth jab. It depends on whether immunity wanes, and whether the immunity that people now have responds to new variants, for example. In the longer term, if we have to live with this virus, will it almost be like the flu, with people having to take annual jabs? It is too early to give a definitive answer on that, but as soon as the evidence suggests one way or the other, we will notify noble Lords.

[Lord Farmer (Con)]

My Lords, may I come at this matter from another angle? Dr Steve James, the King’s College Hospital intensive care doctor who defended the principle of bodily autonomy to the Health Secretary, said natural immunity should be taken into account. Healthcare workers like him, especially those who have had Covid, keep topping up their natural immunity with micro exposures. In the omicron rethink, are the Government considering allowing vaccine-hesitant people to use readily available antibody test kit results instead of vaccine status?

[Lord Kamall (Con)]

First, I thank my noble friend for giving advance notice of the question, enabling me to try to get an answer. While we do intend to revoke the VCOD, subject to consultation in these sectors, we believe that staff still have an important professional responsibility to be vaccinated. The Secretary of State has written to regulators to review their guidance on vaccination for social care providers and the importance of vaccination in supporting the provision of safe care. We believe that vaccination remains important. In conversations I have had—on the daily calls with the UKHSA, for example—I have been told that even if people believe they have natural immunity, vaccination increases immunity by a further percentage. We believe it is worthwhile encouraging people to take vaccines.

Health and Care Bill

Lord Farmer Excerpts

Lords Hansard - Part 1 & Committee stage
Wednesday 26th January 2022 Lords Chamber

Moved by

[Lord Farmer]

154: 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 specify that integrated care partnerships consider how to integrate family help services into the provision of health and social care 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 will speak to all four amendments in this group in my name. I remind the Committee that I have already declared my interests, especially as regards integrated care and family hubs.

In Committee in the other place, the Minister, my honourable friend Edward Argar, recognised

“that the system has been calling for two different and important types of integration: integration within and across the NHS to deliver healthcare services within a defined locality, and integration between the NHS and local government and wider partners.”

He went on to say:

“The ICP is intended to bring together health, social care and public health to develop a strategy to address the needs of the area also covered by the integrated care board. If”—


I emphasise “if”—

“the ICP wants to go further, it can also involve representatives from the wider system, where appropriate, such as voluntary and community groups, and social care or housing providers. That will be up to the ICP, and we will welcome locally driven innovation to reflect local circumstances.”—[Official Report, Commons, Health and Care Bill Committee, 16/9/21; col. 332.]

I, too, welcome locally driven innovation to reflect local circumstances, as I will emphasise shortly. However, I am genuinely mystified as to why integration between the NHS and local government and wider partners is voluntaristic in the Bill. My Amendment 154 would exchange “may” for “must” and require integrated care partnerships to include in their strategy a statement of how health-related services could be more closely integrated with health and social care.

--- Later in debate ---

[Lord Kamall (Con)]

I thank my noble friend Lord Farmer and all noble Lords who spoke about their experiences. The creation of integrated care boards represents a huge opportunity to support and improve the planning and provision of services to make sure that they are more joined up and better meet the needs of infants, children and young people.

Before I go into the specific amendments, I make it quite clear, as my noble friend said, that the Government set out in their manifesto a commitment to championing family hubs. We want to see them across the country, but at the same time we must give democratically elected councils the choice to shape how services are delivered, bearing in mind some of the points made by the noble Lords, Lord Mawson and Lord Warner, whom I thank for their experience on this.

The Government agree that it is vital to ensure that ICPs work closely with a range of organisations and services to consider the whole needs of a family when providing health and care support. In preparing the integrated care strategy, the integrated care partnership must involve local Healthwatch and the people who live or work in the area. We are working with NHS England and NHS Improvement on bespoke draft guidance, which will set out the measures that ICBs and ICPs should take to ensure they deliver for babies, children and young people. This will cover services that my noble friend considers part of family help.

In addition, the independent review of children’s social care is still considering its definition of “family help”, and the definition published in The Case for Change may well be further refined as a result of ongoing consultation. It would be inappropriate to define the term in legislation at this stage, pre-empting the full findings of the review and the Government’s response to it. Also, it is important that there should be a degree of local determination as to what should be included in the strategies of ICBs and ICPs. In order for them to deliver for their local populations, a permissive approach is critical.

On Amendment 167, we agree that family hubs are a wonderful innovation in service organisation and delivery for families. The great thing about them is how they emerged organically from local councils over the last decade. I pay tribute to my noble friend for the key role he has played in advocating family hubs and bringing this innovation to the heart of government. The Government strongly support and champion the move but we are clear that they have to be effective and successful—they need to be able to adapt to local needs and circumstances. They also need to be able to operate affordably, making use of a diverse range of local and central funding streams.

In both these regards, local democratically elected councils should hold the ultimate decision-making power over whether to adopt a family hub model and how it should function. As such, I regret that we cannot support the amendment, which would place too much prescription on the decisions and actions of local authorities and risk imposing significant new financial burdens. For this reason, I ask my noble friend to consider withdrawing his amendment.

[Lord Farmer (Con)]

My Lords, I thank the Minister for his rather disappointing reply and those who supported these amendments, particularly the noble Baroness, Lady Tyler, and my noble friend Lady Wyld, for giving such clear definition to the services and the advantages of family hubs. I take to heart the advice from the noble Lord, Lord Mawson, about unintended consequences. I would quite happily talk to him about this. I also take the point from the noble Lord, Lord Warner, that it is nought to 19, not nought to five. Families have so many problems with teenagers, as we see on the streets today, and family hubs can be a non-stigmatising place where help can be got.

I agree with the noble Baroness, Lady Merron, about Sure Start. In a way, I have always said that family hubs are building on Labour’s Sure Start centres. However, it is not nought to five but nought to 19—in fact, nought to 25 for children who come out of the care system, et cetera, with special needs.

There might be concern that my amendments attempt inappropriately to set in concrete the policy of family hubs when it is constantly progressing. However, the changes I have described are not just about bringing the latest policy idea into the Bill. Absent of these references to places where families know that they can access help and be connected to the full gamut of local services and support, the Bill will not reflect the overarching direction of travel. Their inclusion requires health to be fully on board, which has not happened in the past, to the detriment of the success of previous policies.

Health and Care Bill

Lord Farmer Excerpts

Committee stage
Thursday 20th January 2022 Lords Chamber

[Lord Farmer (Con)]

My Lords, my Amendment 57, which the noble Baroness, Lady Masham, has mentioned, is also supported by the noble Baroness, Lady Walmsley. I declare my interest as a director and controlling shareholder of the Family Hubs Network Ltd, which advocates for family hubs and advises local authorities on how to establish them. I am also a vice-president of the LGA.

In speaking to my Amendment 57, I would point out that in Chinese medicine you traditionally saw the doctor when in health. They were paid a retainer to keep you that way and, if you became sick, they would not be paid until health was regained. This speaks volumes about alternative health paradigms to our own. Even if we never go that far, the prevention of disease and the maintenance of health should be an overriding priority for the health service.

In placing the duty to prevent the development of poor physical and mental health directly under the duty to promote the NHS constitution, it is my intention to make it a similarly fundamental duty. Prevention is always better than cure. Yes, prevention is already mentioned in the Bill, for example in Clauses 5 and 16, and elsewhere in Clauses 20 and 59. However I do not consider that it is given sufficient weight, particularly given concerns shared with me by members of the Family Hubs Network.

Family Hubs Network members work with existing integrated care systems and note that the main issue faced by these ICSs is the management and throughput of the frail, elderly population to address bed-blocking and the onward delays to elective surgery. Hence they can lean towards an acute hospital reactive care model. Family Hubs Network members are already seeing the consequence of this with, for example, few if any ICS strategies focusing on population health through prevention and early help, especially for children and families.

Indeed, more and more ICSs are seeing community-based contracts swallowed up by the acute hospital conglomerates. They rarely, if ever, hold the necessary cultural understanding of community care, prevention and early help, and their interests do not lie in these. Children’s health services, which would ideally be delivered in the community, can be drawn into acute hospital structures which are more reactive than preventive in nature. Yet in some cases these very same services, such as continence, speech and language, allergies and others, are being delivered in community settings, close to families, through integrated family service hubs. Given that many of these health needs are also psychosocial and practical, accessing them from such settings enables families also to receive local authority-commissioned early help. This surely is integration in action.

My amendment also specifies that health services should be available in the community where possible, to improve access and help prevent conditions from worsening. A local-by-default approach would cut down the number of patients required to make prohibitively long journeys when a service could instead be delivered in a primary care or local authority setting. We need a reverse Beeching for healthcare, where we reopen community hospitals. Out-of-area specialist mental health hospitals, which remove people from the social networks which help them get better more quickly, were in the news again this week. Local units have closed and there is a lack of care in the community, even though this is a far less expensive option and the setting in which many prefer to be treated.

Returning to the issue of our ageing population, a reactive care model is completely unsustainable. Unless we focus on preventing big-ticket items such as diabetes, depression, anxiety and dementia—the list is endless—the cost of providing healthcare will keep going up year on year, by even more than it already does. A preventive paradigm would ensure greater ruthlessness about educating parents and healthcare workers about the psychotic effects of high-strength cannabis, for instance.

The eminent professor, Sir Robin Murray, recently said:

“I think we’re now 100 per cent sure that cannabis is one of the causes of a schizophrenia-like psychosis. If we could abolish the consumption of skunk we would have 30 per cent less patients”—


this was in south London—

“and we might make a better job of looking after the patients we have.”

In 2019, Murray’s research team reported in the Lancet Psychiatry their finding that south London had the highest incidence of psychosis in Europe and singled out cannabis as the largest contributing factor. He expressed concern that some liberal-minded parents would rather see their children smoking pot than drinking, without appreciating the potential associated dangers and the social and economic costs. These multiply with skunk, which is several times more potent than the drug they might have been used to in their day.

It is not just parents who need educating, including about higher-strength forms: experts say that cannabis addiction is treated by health professionals as a low-risk soft drug, yet, since 2005, there has been a 777% increase in the number of those aged 55 and over who need treatment for it. When cigarettes’ contribution to the development of lung cancer was firmly established, action to prevent smoking was taken despite it being fashionable and popular—more than 60% of adult males smoked; now that number is approaching 15%.

When there is incontrovertible evidence that something harms mental or physical health, a duty to prevent would mean that such damaging ignorance was no longer allowed to prevail. Ditto foot-dragging on access: mental health care in the community has been talked about since we began to close asylums in the early 1960s, yet it is still in the NHS long-term plan. I am keen to hear from my noble friend the Minister why prevention should not be given prominence as a duty in the Bill.

[Baroness Hollins (CB)]

My Lords, it is a pleasure to follow the noble Lord, Lord Farmer. I really appreciate his remarks about Professor Murray’s work and his interpretation of it.

This is a Bill about integration, but how much integration will it actually achieve? We have spoken many times about wanting health and social care to work better together, but there is a difference between collaboration and integration. The former achieves two separate systems that, while better aligned in, for example, their information sharing, still operate without particular reference to the other. Those who use both systems continue to straddle a divide between the two and, too often, fall between those gaps.

Integration, on the other hand, speaks of synergy and of systems that enable one another and close the divide between the two, so that people can move between them without the terrifying leap of faith that currently exists. This is what will truly make a difference for those who use these services.

Unfortunately, the Bill in its current form will struggle to bring about this true integration. It requires the production of only a health outcomes framework, which will simply entrench the divide between health and social care, as both will continue to pull in different directions with different objectives, which are often conflicting.

Currently, health and social care sectors work towards two different sets of aims: social care is led by the well-being objectives of the Care Act 2014, whereas the NHS is led by various objectives set out in documents such as the NHS constitution, the NHS Oversight Framework and the NHS Long Term Plan.

An integrated service would mark a major shift in how the two systems view their role in supporting those who use their services. For example, it could see the NHS adopting an approach that was informed by ensuring the independence of its patients in a similar way to the principles that lead the provision of care and support. The greatest problems have been caused when health and social care start to gatekeep their domains: I have had to speak too often about the abhorrent placement of people with complex needs in in-patient units far from home, as a result of catastrophically poor alignment of health and social care support to meet their needs locally. I declare an interest as chair of the Department of Health and Social Care-appointed panel to oversee the discharge of people with learning disabilities and autistic people who are detained in long-term segregation.

I want to thank Mencap and Skills for Care for briefings on my amendments in this group. My Amendments 85 and 88 would place greater emphasis on the provision and quality of social care services and on the integration of health and social care services. I also declare an interest as president of the Royal College of Occupational Therapists. This is relevant because occupational therapy is a health profession that is equally at home in the NHS and in social care, and because occupational therapists have a role in tackling long-standing health inequalities through community rehabilitation and in prevention.

The history of health and care integration is littered with a natural reflex towards health and the pressing political priorities of the day. The ICB is primarily NHS focused and will hold responsibility for strategic planning and monitoring of services against the needs of an ICS population, but the answers cannot all come from health alone. We are in danger of missing an opportunity.

A duty to promote integration must include adequate provision for both health and care by taking a holistic approach. The outcomes from one will impact significantly on the other. Viewing the duty to promote integration through a health lens alone limits our understanding of what social care has to offer—think back to the debate on my noble friend Lord Mawson’s amendment on Tuesday. In some areas, integrated care system planning seems to focus mostly on integration within healthcare and not on integration between and across health-led provision and social care. At present, provider alliances are largely acute trust led.

Let us take discharge co-ordination as an example. It is currently suboptimal, with too few care co-ordinators, a lack of social care representation and feedback in assessment decisions, and a neglect of the resources and expertise of voluntary and independent providers.

The staffing context is complex. According to Skills for Care, there are 17,700 organisations providing or organising care, delivered through 39,000 establishments. Some 41% of those are residential, 59% are non- residential and 68% are CQC regulated. More than 6,000 organisations have fewer than four employees. That is a very broad church of employers. Not only does it make it much more difficult to communicate but social care lacks the infrastructure of the NHS to disseminate and co-ordinate.

My amendments propose strengthened provisions for ICBs to consider how integration benefits and can benefit from social care. My Amendment 89 would require ICBs to develop and publish a health and social care outcomes framework at least every two years to ensure that health and social care services are properly integrated.

ICSs present an opportunity to co-ordinate services, improve population health and plan on a system-wide basis to attract and retain staff with the right mix of skills. The ICS role should therefore ensure that the right staff skill mix is available to deliver this singular vision, a vision of person-centred and outcome-based care through multidisciplinary teams operating with and around each individual. Integrated care would mean that people would only have to tell their story once to receive high-quality, joined-up and seamless care. The approach each system takes to workforce planning will rightly vary to meet local needs and requirements, but that does not mean that their workforce plans cannot be measured against a joint outcomes framework. In collaboration with partners, Skills for Care has developed principles of workforce integration which address the above points.

The aim of this amendment is to ensure that health and social care do not pursue two different sets of objectives but work to a common aim to underpin transformation. I ask the Minister to reassure the Committee on these points. I believe these amendments will be helpful.

Health and Care Bill

Lord Farmer Excerpts

2nd reading
Tuesday 7th December 2021 Lords Chamber

[Lord Farmer (Con)]

My Lords, I join with all noble Lords to welcome the noble Lord, Lord Stevens of Birmingham. I really enjoyed his constructive and funny maiden speech.

If integration is the aim of the Health and Care Bill, it fails in one extremely important respect, brought into stark relief by the tragedy of Arthur Labinjo-Hughes. I say this not to appropriate a hard case, but because the two reviews led by the noble Lord, Lord Laming, following similarly horrifying child deaths, both stressed the need to integrate all the services that should keep children safe. Although prevention and early intervention in the form of family help have been missing for too long from the pipeline that led to children’s social care, this lack is now finally being rectified by the Government’s focus on rolling out family hubs. Yet this important new infrastructure, which also integrates paediatric health, goes unmentioned in the Bill.

Family help needs to include an emphasis on the prevention of family breakdown, the elephant in the room of children’s social care policy. As I said yesterday after the repeat of the Statement about Arthur,

“Evidence shows that children on the at-risk register are eight times more likely to be living with a natural parent and their current partner”—[Official Report, 6/12/21; col. 1677.]


than the national distribution for similar social classes. Children living in households with unrelated adults are nearly 50 times as likely to die of inflicted injuries than children living with two biological parents. When both mother and father feel kin altruism towards a child, this can make a significant and decisive difference to that child’s health. Good family and other relationships are health assets, so the Bill should treat family-based interventions as part of the overall health approach and recognise the need to integrate them with physical and mental health provision.

Even absent this monstrous case, the Health and Care Bill should be reinforcing and integrating other cross-departmental work in government, such as the commitment to champion family hubs for families with children aged nought to 19—or up to 25, if there are special educational needs. Family hubs build on the work of children’s centres but go far beyond it and are central to the implementation of the Start4Life workstream, based in the Department of Health and Social Care. In fairness to the Government, this agenda has gathered considerable momentum since the Bill was published, and family hubs are now a big-ticket spending item in the £500 million spending-review commitment to support families.

They can also work preventively to meet children’s health needs, in relation to childhood obesity for example, as close to home as possible. In Essex, family hubs deliver midwifery and immunisation services and prevent unnecessary attendances in GP practices and A&E. They also deploy community-based clinical expertise for conditions such as allergies, continence, perinatal mental health, speech and language services and neuro- developmental conditions such as autism. This means that busy parents, who often have several children to look after, are spared lengthy and expensive hospital visits. When getting to that visit proves too difficult for the family, the ill child goes without treatment, and hospital- based services have yet another wasted appointment.

A preventive community asset-building approach requires out-of-hospital care to be protected and enhanced, possibly by ring-fencing funding for community-based provision. Yet the importance of preventive health support and treatment has not been adequately covered in the Bill. It is simply listed as one of several commissioning requirements of ICBs, with no broad mention of children’s health. Only young children are mentioned in the context of maternity services. Finally, the desired short and long-term health and well-being outcomes for children and families need to be determined, achieved and measured.

In summary, children’s community health provision must begin with a preventive community asset-building approach and be aligned and integrated with public health and local authority-funded early-help provision. As Dame Rachel de Souza, the Children’s Commissioner, said about Arthur, the life of a child is of “inestimable value”. The omission of school-age children, young people and family support was always puzzling, given the integrating imperative of the Bill. It makes even less sense in the wake of this tragedy.

Men’s Health Strategy

Lord Farmer Excerpts

Monday 25th October 2021 Lords Chamber

Asked by

[Lord Farmer]

To ask Her Majesty’s Government what plans they have to introduce a men’s health strategy.

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

Average male life expectancy is below female life expectancy in the UK, although women spend a greater proportion of their lives in ill health and disability. We are committed to taking action on the range of specific conditions that affect men particularly, including heart disease, liver disease and cancer. Tackling mental health, including suicide, and smoking—both of which are more prevalent in men—are also an important focus.

[Lord Farmer (Con)]

I thank my noble friend for that fairly comprehensive reply and I take this opportunity to welcome him to the Front Bench and give him every wish for good health during his tenure. The latest ONS estimates show that male life expectancy is falling. What analysis have the Government made of the social determinants of health that contribute to this decline, particularly many men’s lack of close relationships? How will they address the fact that, although loneliness is putting significant pressure on GPs, men are less likely than women to come forward?

[Lord Kamall (Con)]

I thank my noble friend for his warm welcome and hope that this continues for some time. To answer his question, the Government regularly consider the social determinants of health, especially how they contribute to our life and healthy life expectancy. We have seen growth in life expectancy slow in line with many countries, which is a challenge that has been exacerbated by the Covid-19 pandemic. We have not yet made a specific assessment of how social determinants drive male life expectancy. On the point about men’s loneliness, since the beginning of the pandemic we have invested £34 million in organisations supporting people who experience loneliness, including men.

NHS: Hospital Visiting

Lord Farmer Excerpts

Wednesday 15th September 2021 Lords Chamber

Asked by

[Lord Farmer]

To ask Her Majesty’s Government what steps they are taking to ensure visiting arrangements in all NHS hospitals resume as soon as possible.

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

My Lords, we absolutely recognise the importance of people’s ability to visit their loved ones. Over the pandemic, NHS guidance advised all NHS hospitals to welcome visiting in a Covid-secure way. Now that we are not in a national lockdown, visiting arrangements are set out locally by NHS trusts and other NHS bodies. The health, safety and well-being of patients, staff and communities remains the priority, but careful visiting policies remain appropriate to ensure safe hospital visits.

[Lord Farmer (Con)]

My Lords, I thank the Minister for his Answer. Do the Government collect statistics on the number of in-patients whose mental well-being deteriorates during their stay in hospital? Also, what assessment, if any, has been made of the impact of visits on patients’ mental well-being and recovery?

[Lord Bethell (Con)]

My noble friend raises an important question. Mental well-being is affected by visiting. We know that particularly from social care, where this has been a particularly onerous problem for those in care and their loved ones. I am not aware of any statistics being assessed but I will look into it and write to him. He makes an extremely important point. We do, however, take statistics on nosocomial infection. I am afraid that is a massive issue, which we must balance at the same time.