Health and Care Bill

Lord Geddes Excerpts

Lords Hansard - Part 1 & Committee stage
Wednesday 9th February 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, this amendment has been several years in gestation. It dates back to the case of Charlie Gard in 2017. There have also been other cases that suggested we must do better than rush to the courts, with all the anguish that causes to parents and clinicians alike, let alone the expense to the NHS and others. That is why I am proposing that there should be independent mediation where there is a serious disagreement between loving parents and the clinical team caring for a child who is not Gillick-competent.

Difficulties arise when the child’s prognosis seems hopeless to clinicians but the parents do not share that view and want to know that they have tried everything. The clinicians may feel that the best interests of the child would be for the child to be allowed to die, but the parents can perceive this as life being ended, even though the child would have already died without all the care and interventions that had been put in place. In other words, when death occurs, the child dies of their underlying condition. The clinicians have not euthanised the child. However, pressures in the media towards doctors administering lethal drugs and euthanasia have portrayed death as a solution, and there is a perception that our overwhelmed NHS is desperate to clear beds, save money and, sadly, even cover up shortcomings.

However, no one has interests when they are dead; they are a corpse. By contrast, the parents feel that any improvement is worth having, and that it is in the best interests of the child to continue to experience their love and affection and to try a novel therapy that seems, on balance, possibly to do more good than harm—that is, it does not cause significant harm to the child—and, if there is no improvement, it is easier for them to accept the natural death of their child.

In Charlie’s case, a novel treatment seemed to offer hope, a nucleoside powder to be added to feeds of mitochondrial depletion syndrome. This did not involve invasive procedures and was estimated by New York-Presbyterian Hospital and Columbia University Irving Medical Center’s Dr Hirano to have a 56% chance of success. That is important because it is over 50%. In 13 out of 18 children with TK2 mitochondrial depletion it had appeared to be beneficial but it had not been tried in RRM2B, the variant that Charlie had. This was not a distressing invasive treatment from a dubious medical centre, and the parents would gladly have had Charlie as part of an N of 1 trial, accepting failure but knowing that they had done everything.

The total cost of a three-month trial of nucleoside powder would have been about £3,000. Contrast that with the costs of over £250,000, made up of £205,225 costs to Great Ormond Street Hospital, almost £35,000 that his parents had to fundraise for, and £32,500 spent by Cafcass. That seems to be the norm. Cafcass also reported that in 2016 it was involved in 18 parent-doctor disputes that ended up in court. If these costs are indicative, that suggests around £4.5 million from the NHS each year.

No one should underestimate the intense emotional anguish of these parents in such cases, nor the stress and difficulty for the clinical team. The requirement that the parents can seek a second opinion means that they can do so swiftly, with full access to their child’s clinical record. This recognises the speed with which children can deteriorate when very ill.

Currently a second opinion may be sought only by a clinician. This part of the amendment would put the parents on an equal footing to ensure that they could seek one too. If there is a dispute between those with parental responsibility then, as now, the court would have to be involved. It is for the courts to veto inappropriate demands, and no clinician would ever be forced to administer a treatment that they did not view as being in the best interests of the child.

Rather than clinicians and parents being pitted against each other, with press interest and the risk of campaigning groups further polarising views, the amendment proposes that independent mediation must be offered. It needs to be independent to remove the suspicion that the mediator is entering the discussion biased towards the clinical establishment and away from the parents. Mediation is different from arbitration; it must be voluntarily entered into, using mediation processes designed to avoid legal disputes. It may help the parents to realise that the clinicians’ decisions are right after all and in the best interests of the child. Indeed, such realisation is evident in some of the very sensitive judgments given by the court.

The amendment would focus on the balance of probabilities. There is no absolute line because each case is different. If the dispute remained intractable, the case would proceed to the court, where the court would have to take into account all the evidence and consider whether the risk was significant. “Significant” is not a precise medical term; it would leave it to the court to decide whether the risk of harm involved in the parents’ proposal was sufficiently significant to interject across their parental responsibility and prohibit the proposed treatment. It would create the legal test of “disproportionate risk of significant harm” to assess the balance of factors, replicating the legal test already used by social services under the Children Act 1989 to consider whether to remove the child from their parents’ care. This legal test would sit before, rather than replace, the current “best interests” test, which is very broad and can be subject to different interpretations.

Contrary to the misleading briefing that some Peers may have received, the legal test in the amendment would not allow a person with parental responsibility to force any intervention. The court must always be, and would remain, free to objectively judge the issues. In the rare cases where disputes still reach litigation, access to legal aid would ensure families can access justice without being forced to rely on outside interest groups to fund the case.

The aim of this amendment is to solve some major problems for the Government. It would ensure resolution of some distressing prolonged disputes between loving parents and clinicians, disputes that benefit no one, and would reduce the likelihood of cases escalating to the courts and the millions of pounds in litigation costs. I beg to move.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

I advise the Committee that the noble Baronesses, Lady Brinton and Lady Masham of Ilton, have indicated that they wish to take part remotely. I call the noble Baroness, Lady Brinton. I am sorry, I thought it was in alphabetical order. I shall therefore call first the noble Baroness, Lady Masham.

[Baroness Masham of Ilton (CB) [V]]

My Lords, in supporting Amendment 287 I cannot think of a better person to have moved it than my noble friend Lady Finlay of Llandaff, professor of palliative care. If there is a dispute, a difference of opinion, between a parent and a child with a life-limiting illness and a doctor responsible for the child’s treatment, it can be heartbreaking. The stress and anxiety the parents can be put under can be unbearable if the doctor in charge is invincible. It is important to ensure that the views of the parents and anyone else concerned with the welfare of the child are listened to and considered.

The amendment would put mechanisms in place and highlight benefits that Charlie’s law can provide for both parents and doctors when a major difference of opinion arises. Most parents will do anything for their children in a critical situation if there is a slight hope that the treatment might work and benefit their child. Sometimes the treatment is abroad and not available in the UK. This happened to Ashya King, a young boy who had extensive surgery for an aggressive brain tumour. His parents wanted to take him to the Proton Therapy Center in Prague for treatment, but there was a dispute with Southampton hospital. At that time, there was no proton treatment in the UK. His parents took him from the hospital to Spain via France, landing up in prison in Spain and making a court appearance. This traumatic struggle hit the headlines and, in the end, young Ashya did go to the Czech Republic for treatment. How much better it would have been if there had been an agreement to save a humiliating situation for everyone.

A great deal of work and care has gone into this amendment. I thank my noble friend for all she has done, and I hope the Government will accept the amendment.

--- Later in debate ---

Many people have described the Health and Care Bill as a framework Bill, where the structures are set up and the detailed delivery plans are left to communities, who will decide what works best for them. I broadly agree with this approach. However, for the reasons outlined already, with dementia, there is an urgent need for a national strategy. With the growing number of people being diagnosed with dementia and the huge pressure this is putting on our social care system, I believe this national strategy proposal needs to be included in the Bill. Given that the demand on social care is set to increase due to the projected increase in the number of people living with dementia, we need to get this right. I beg to move.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

My Lords, the noble Baroness, Lady Masham of Ilton, is taking part remotely. I invite her to speak.

[Baroness Masham of Ilton (CB) [V]]

My Lords, Amendment 297D is very important. Unacceptable practices of bullying and intimidation of the most vulnerable people must not take place. I thank the noble Lord, Lord Hunt of Kings Heath, for bringing this amendment to the Committee. I support it.

I congratulate “Panorama” and those who worked undercover to expose these unacceptable wrongdoings in the past in care homes, nursing homes and hospitals for residents who are very vulnerable. The programme showed one girl who was a resident and had asked to be looked after by female staff only. This did not happen, and the film showed men taunting her and seeing her get upset, as they carried on with their bullying and tormenting. All sorts of abuse has been exposed in some of the homes, which were spread across the country, such as Whorlton Hall in Barnard Castle, Winterbourne View near Bristol, Ashbourne House in Rochdale, and many, many others. This is not easy work and staff need to be well trained and suitable candidates, with patience and dedication.

During Covid-19, this situation has been a great risk. Many of the residents are a long way from home and they are very isolated. There should be independent inspections and spot checks; there should not be closed doors. There should be regular safeguarding in the regulations.

I hope that the Government will take this seriously. There should be a duty of candour so that whistleblowers are not victimised when reporting what they think is bad practice. I look forward to the Government’s reply, and I hope it will be helpful.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

My Lords, the noble Lord, Lord Howarth of Newport, is also taking part remotely. I invite the noble Lord to speak.

[Lord Howarth of Newport (Lab) [V]]

My Lords, I pay tribute to the noble Baroness, Lady Greengross. No one has done more than she has to champion the elderly and the frail. I support all the amendments in this group but will speak only in support of Amendment 290.

There is much evidence of the benefits of creative activity to dementia. Some of this was set forth in the Creative Health report, and more recently in the document A.R.T.S for Brain Health, edited by Veronica Franklin Gould, the founder and now president of Arts 4 Dementia. I pay tribute to her passionate and indefatigable work.

As noble Lords, we have the opportunity to exercise our aging brains in trying to understand amendments to the Health and Care Bill. Others at our time of life take even greater pleasure and benefit to their health through music, painting, poetry, dance, drama and other art forms. Of course, that range of cultural opportunities is there for us too—the cultural scope of Peers is not limited to “Iolanthe”.

Veronica Franklin Gould has very well said:

“music-making provides a tool for a total brain workout”.

The mental activity of learning poetry, performing drama and creating painting or craft opens new neural pathways and connections. Research shows that creativity benefits the plasticity of the cortex, enhances cognitive abilities—perception, motor function and memory—and improves cardiovascular strength. In more humane language, engagement with the arts allows creative self-expression, offers sociability, reduces stress and increases resilience—all leading to joy and achievement. These are profound and measurable benefits. Arts 4 Dementia offers programmes in creative arts venues for people, from the onset of early symptoms of dementia. I draw the attention of the House to the very important work of Manchester Camerata, in partnership with the University of Manchester, in its Music in Mind dementia programme.

There can be years between the appearance of early symptoms and the moment at which someone receives a memory assessment and a diagnosis. This can be a lonely and fearful time, during which the arts can be particularly sustaining. Creative activity slows the deterioration of the brain. The benefits of engagement with creative activity continue for a long time.

Professor Martin Marshall, chair of the Royal College of General Practitioners, has recognised this. He said:

“The shift for us in general practice is not just engaging with the medical activities which are core, but to engage with social activities, and make sure the two are aligned.”


Will the Minister accept amendments to this legislation to ensure that the structures and requirements that it creates encourage, facilitate and drive the shift of which Professor Marshall speaks, and bring the crucial support of the arts and other forms of social prescribing to people with dementia and others? If he does not believe that the legislation needs amendment, will he explain how, as presently drafted, it will drive that change?

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is also taking part remotely. I invite the noble Baroness to speak.

[Baroness Brinton (LD) [V]]

My Lords, I thank the noble Baroness, Lady Greengross, and others for the amendments in this group, which would help transform some of the long-standing problems in social care, as well as improve the quality of life of patients and their families, especially those who care for them. I will speak to Amendment 297D, in the name of the noble Lord, Lord Hunt, which seeks the establishment of a review into institutional abuses in care settings within six months of the passing of this Act.

Amendment 297D talks about the effects of restrictive visiting and eviction notices

“on the emotional, psychological, social and physical health of service users, and on the well-being of service users”

and their families. Obviously, “restrictions on visiting” has taken on a whole new meaning throughout the Covid-19 pandemic. I note that the Rights for Residents campaign group has secured more than 270,000 signatures on a petition for a law that ensures that

“every resident has the legally enforced right to the support of an essential visitor”.

Currently, homes are meant to support an essential caregiver for all residents—but this is advisory and some homes are still imposing blanket bans on visits. That may be because they have some Covid infections inside the home, but that is not universally true.

There is still no clear picture of how visits are going on in care settings. These could be difficult for residents with dementia, for example, if there is only a very small window for visiting—and perhaps it is just not the right time or the right day for them.

Unlock Care Homes is also doing work on this, including highlighting good practice. It is important to remember that most care homes are not just doing their best, they are doing really well with looking after their residents, despite the constraints of the pandemic, staff shortages and burnout.

Time and again, investigative journalists are uncovering practices going on in care settings that are inhuman, breach vulnerable residents’ human rights and damage patients’ mental, physical and psychological well-being. The noble Baroness, Lady Masham, referred to a long list, and that list is indeed shameful.

A series of scandals led to a CQC report into restraint, seclusion and segregation for autistic people and people with a learning disability being commissioned in 2018. It was published in October 2020. The report said:

“We found too many examples of undignified and inhumane care in hospital and care settings where people were seen not as individuals but as a condition or a collection of negative behaviours … We also found that a lack of training and support for staff meant that they are not always able to care for people in a way that meets those individuals’ specific needs. This increases the risk of people being restrained, secluded or segregated.”


However, the Government have not yet commissioned a review of the entire sector, to understand and learn from the causes and poor practices that have resulted in those institutions failing their residents. Commissioning such a review would demonstrate that the Government really want to bring a halt to these practices.

Health and Care Bill

Lord Geddes Excerpts

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

I hope that the Government will think again and see how they can systematically ensure that proper attention is paid to how we can enable these communities to access decent services. It is possible—I have tried to be positive and show that—but it must be done throughout the NHS and systematically in partnership with those people who know what it is like to have difficulty in accessing services because they have been excluded for so long. We really must make sure that we make a massive difference on tackling these health inequalities.

[The Deputy Speaker (Lord Geddes) (Con)]

As gently as I can, I must point out to the noble Baroness that this not the occasion to move her amendments; we will come to that later. She has correctly spoken to her amendments in this group but we will come to them sequentially later.

[Lord Shipley (LD)]

My Lords, now that we are on Report, I must remind the House that I am a vice-president of the Local Government Association.

I rise to speak to Amendments 63, 65 and 67 in this group, to which I am a signatory along with the noble Baroness, Lady Armstrong of Hill Top. I will not repeat the points made in Committee and this afternoon unnecessarily because I am confident that the Government are listening to what has been said and wish to see progress towards levelling up health outcomes and tackling health inequalities. It is the right thing to do.

I lend my support to three policy solutions in particular. The first is the significant opportunity presented by the forthcoming health disparities White Paper. The Government should not miss the opportunity that this presents because it can clearly set out how exactly they propose to lead on tackling the poor health outcomes of inclusion health populations. I hope that the Minister will work closely with the voluntary and inclusion health sectors to shape what the White Paper will say. Secondly, I support the idea of creating a task force from the Department of Health and Social Care and NHS England to help drive forward the Government’s work to reduce health inequalities for the most marginalised. Thirdly, I urge the Government to take this opportunity to update guidance to specify explicitly that the NHS does not exist in a vacuum and that secure, safe housing is critical to an individual’s health and well-being. I hope that the Minister will be able to confirm that statutory guidance and the White Paper will reflect all these matters.

Having said that, these three amendments—Amendments 63, 65 and 67—are still important. I welcome yesterday’s letter from the Minister, the noble Lord, Lord Kamall, explaining the package of government amendments now also proposed. I am pleased that that letter confirmed the Government’s commitment to tackling health inequalities. It is very positive to see the reference to “persons”, not just “patients”, in Amendment 3 as an important statement of principle both for inclusion health and to improve outreach, as the noble Earl, Lord Howe, said earlier.

Progress has been made following Committee but I still seek reassurance from the Minister that the Government will dedicate the necessary time and resource to tackling the poor health outcomes of inclusion health populations, who can all too easily fall through the gaps in provision.

Health and Care Bill

Lord Geddes Excerpts

Lords Hansard _ Part 1 & Report stage
Wednesday 16th March 2022 Lords Chamber

[Baroness Cumberlege (Con)]

My Lords, my amendment is grouped with the amendment in the name of the noble Lord, Lord Hunt, whose persistence I admire concerning those who have suffered vaccine damage. My amendment is slightly different, but it is along the same lines in that it is about unintentional outcomes and redress for those who have suffered.

My amendment requires the Secretary of State to bring forward proposals for redress schemes to help those who have suffered avoidable harm linked to the three medical interventions that were examined in the report from the Independent Medicines and Medical Devices Safety Review, which I chaired. These are hormone pregnancy tests—the most common being Primodos—the epilepsy drug sodium valproate and pelvic mesh, which was used to treat stress urinary incontinence and pelvic organ prolapse.

I will be brief, but I make no apology for bringing this before your Lordships’ House again because the case for these schemes is so compelling. These are people who, through no fault of their own, have suffered terribly and had their lives changed for the worse and in some cases completely ruined—all because of mistakes, errors of judgment, oversights and a refusal to listen across the healthcare system. In each case—Primodos, valproate and mesh—harm could and should have been avoided. If that does not underline the moral and ethical case for providing some help, then I really do not know what does.

I believe that my noble friend the Minister and his colleagues are genuinely sympathetic to the plight of these women and their children, but I sense that they are hesitant. I urge them to overcome some of this reluctance and act now. The suffering is immense, it is continuing even today, and very sadly people are dying before they receive the help they need. I remind my noble friend that these redress schemes are not the same as compensation. We are not talking about large sums of money. We are talking only about modest funds to help with the challenges of daily life: to pay for mobility aids, a respite break, travel to hospital. This is help that they do not and cannot access at the moment from the NHS, social services or elsewhere.

In Scotland, the Government there have acted. A scheme was set up to provide help to women suffering from mesh complications. It is modest: it was given a £1 million budget and women had to apply to it to be eligible. But it was welcomed, and it has helped. That is the kind of help I have in mind. Sums of that scale are barely noticeable in the context of the hundreds of billions we spend on health and social care, yet these small sums would mean so much to so many.

Are there concerns that this might set a precedent and that before we know it dozens of other groups of people who have suffered will all want the same? I do not believe so. That has not happened in Scotland. Thalidomide did not lead to an avalanche of other groups requiring help. We have existing schemes to help others who have been harmed. If the Government really believe that compensation is the better way for these people to get help, they are mistaken. The fact is that many have tried to obtain compensation through the courts. It is time-consuming, costly, stressful, adversarial and, worst of all, it simply has not worked.

The three groups that Amendment 180 is designed to help are small in number—not millions of people, not hundreds of thousands. I do not believe that an unwelcome precedent would be set. I do not believe that these schemes would cost the earth. The cost would be modest and can be contained and managed. I believe the benefits will outweigh the cost and that we have a moral and ethical duty to help these people. They have suffered for years and in some cases for decades. Surely the measure of a decent society is how well it looks after those who have suffered harm, especially where that harm could and should have been avoided.

I have met hundreds of people who have suffered; even today I get a lot of emails, phone calls and letters. We have heard from many more people. I am clear that help is both needed and deserved. People should not be made to wait any longer. I hope that my noble friend the Minister will agree.

[The Deputy Speaker (Lord Geddes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.

[Baroness Brinton (LD) [V]]

My Lords, I speak from these Benches to support both amendments in this group. The noble Lord, Lord Hunt, introduced his Amendment 164 on vaccine damage payments, explaining that the current law as set out in the Vaccine Damage Payments Act 1979 is now over 40 years old. The amendment asks for a judge-led review on what parts of the Act need to be updated, especially the maximum payable as a result of vaccine damage.

The amendment proposes a small and focused review that will assist those who have been damaged by vaccines and will help the NHS, Government and Parliament ensure that the legislation is fit for purpose in the 21st century, especially for the families of those damaged by the Covid vaccine and of the very few who died. They may be an infinitesimally small percentage of those who have been vaccinated but their lives have been turned upside down because of doing the right thing.

Amendment 180 in the name of the noble Baroness, Lady Cumberlege, is an important pillar of delivering the recommendations from her First Do No Harm review, which outlined routes to assist those who had been harmed by an avoidable harm as a result of using certain HPTs, sodium valproate or pelvic mesh. The victims of this avoidable harm are not to blame for it either, but are living out the consequences, including needing additional care for the rest of their lives. I know that the Government have been very supportive of the First Do No Harm review. I hope that they can be persuaded that now is the time to introduce schemes that will help these people. While I fear that there may not be movement on these two amendments today, I hope that the Minister can outline when there is likely to be progress on these two financially modest but essential areas that could right some long-term wrongs.

Health and Care Bill

Lord Geddes Excerpts

Consideration of Commons amendments
Tuesday 5th April 2022 Lords Chamber

I hope my noble friend and his colleagues are now able to join the consensus, support the amendment and ensure that we start to improve workforce planning for the benefit of the NHS, its staff and, of course, most importantly, the people it is here to care for. I beg to move.

[The Deputy Speaker (Lord Geddes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely.

[Baroness Brinton (LD) [V]]

My Lords, although my noble friend Lady Walmsley will be speaking from our Benches on the workforce amendments, I just want to commend the noble Baroness, Lady Cumberlege, on the eloquent speech she made on the need for proper and effective workforce planning. I support everything she said.

I will now speak to Motions D and D1 on genocide and modern slavery, having added my name to amendments at earlier stages of the Bill. I thank the Government for their Amendment 48A in Motion D. Frankly, a review of the NHS supply chains should undoubtedly happen, regardless of the Bill, but the amendment does not go nearly far enough to stop the practice of suppliers to the NHS purchasing goods where there has been a risk of slavery and human trafficking. The amendment talks only about the Secretary of State having to “mitigate the risk”. In the linguistic range of a Minister making commitments, mitigation does not hit even the halfway bar.

We need to be blunt. A very large quantity of NHS medical equipment is sourced, in whole or in part, from the People’s Republic of China. Despite the Government denying that any equipment is sourced from the Uighur region, reports have found that the UK Government have bought more than £150 million-worth of PPE from Chinese firms directly linked to abuses of Uighur rights abuses. As recently as this month, supply chain specialists revealed that the NHS continues to be supplied PPE from a company known to use Uighur forced labour programmes. Without legislation mandating transparency and due diligence, it seems very unlikely that the Government will be able to ensure that they are not sourcing goods from companies practising modern slavery.

Amendment 48B in Motion D1 in the name of the noble Lord, Lord Blencathra, goes beyond the Government’s proposals for a review by seeking to ensure that the Secretary of State must by regulation make provision to ensure that all procurement of goods and services for the health service in England avoids slavery. The UK Government have to face up to their obligations to prevent through the law any forced labour and people trafficking in UK health supply chains. From these Benches we will support Amendment 48B in Motion D1.