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.