Baroness Finlay of Llandaff:

Moved by Baroness Finlay of Llandaff

287: After Clause 148, insert the following new Clause—“Dispute resolution in children’s palliative care(1) This section applies where there is a difference of opinion between a parent of a child with a life-limiting illness and a doctor responsible for the child’s treatment about—(a) the nature (or extent) of specialist palliative care that should be made available for the child, or(b) the extent to which palliative care provided to the child should be accompanied by one or more disease- modifying treatments.(2) Where the authorities responsible for a health service hospital become aware of the difference of opinion they must take all reasonable steps—(a) to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to and taken into account;(b) to make available to the parent any medical data relating to the child reasonably required to obtain evidence in support of the parent’s proposals for the child’s treatment (including obtaining an additional medical opinion); and(c) where the authorities consider that the difference of opinion is unlikely to be resolved entirely informally, to provide for a mediation process, acceptable to both parties, between the parent and the doctor.(3) In the application of subsection (2) the hospital authorities—(a) must involve the child’s specialist palliative care team so far as possible; and(b) may refuse to make medical data available if the High Court grants an application to that effect on the grounds that disclosure might put the child’s safety at risk having regard to special circumstances.(4) Where the difference of opinion between the parent and the doctor arises in proceedings before a court—(a) the child’s parents are entitled to legal aid, within the meaning of section 1 of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (Lord Chancellor’s functions) in respect of the proceedings; and the Lord Chancellor must make any necessary regulations under that Act to give effect to this paragraph; and(b) the court may not make any order that would prevent or obstruct the parent from pursuing proposals for obtaining disease-modifying treatment for the child (whether in the UK or elsewhere) unless the court is satisfied that the proposals—(i) involve a medical institution that is not generally regarded within the medical community as a responsible and reliable institution, or(ii) pose a disproportionate risk of significant harm to the child.(5) Nothing in subsection (4) requires, or may be relied upon so as to require, the provision of any specific treatment by a doctor or institution; in particular, nothing in subsection (4) —(a) requires the provision of resources for any particular course of treatment; or(b) requires a doctor to provide treatment that the doctor considers likely to be futile or harmful, or otherwise not in the best interests of the child.(6) In this section—“child” means an individual under the age of 18; “health service hospital” has the meaning given by section 275 of the National Health Service Act 2006 (interpretation);“parent” means a person with parental responsibility for a child within the meaning of the Children Act 1989.(7) Nothing in this section affects the law about the appropriate clinical practice to be followed as to—(a) having regard to the child’s own views, where they can be expressed; and(b) having regard to the views of anyone interested in the welfare of the child, whether or not a person concerned within the welfare of the child within the meaning of this section.”

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.

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.

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.

My Lords, I will be very brief, as the noble Baroness, Lady Finlay, has comprehensively explained why her amendment, Amendment 287, which seeks to create a dispute resolution mechanism in children’s palliative care, is important. There is no doubt of the challenges experienced by parents who are facing the dreadful news of their child’s deteriorating health and likely end of life, and who are trapped in a process that makes them feel as if their requests for new, different or more treatment are being refused by the hospital, not least if they feel that the hospital is acting as prosecutor, jury and judge against their wishes.

However, as the noble Baroness, Lady Finlay, has outlined, one must also sympathise with doctors and other healthcare professionals who believe that they are doing the best for the child in these distressing circumstances. For these cases to end up going through the courts is not a good dispute resolution process. The noble Baroness, Lady Finlay, has also outlined the extreme costs to the NHS and to the parents of the child. We now need a system, even if rarely used, which parents can feel is independent but medically expert to help to resolve and mediate the dispute when the relationship between them and the hospital has broken down.

My Lords, I added my name to Amendment 287, and I thank my noble friend for tabling Charlie’s law. Charlie Gard’s case was painful for all involved, including his parents and the doctors at the hospital where he was receiving treatment. Protracted disagreements can have far-reaching effects, particularly when they are played out in public, as has happened in a small number of cases. For the child, it can mean a delay in a decision about their care and treatment. For the parents and family of the child, there can be enormous distress, feelings of loss of control, and financial strain. Healthcare staff can also experience stress and anxiety, and they might be subjected to intimidation.

The parents of Charlie Gard, Alta Fixler, Alfie Evans, Tafida Raqeeb, and many others, wanted to do what any parent would do to try to improve their child’s condition and alleviate their child’s suffering. However, it is evident that the parents in such cases do not feel adequately heard and listen to when discussing options about their child’s treatment. This results in the devastating conflicts that lead to litigation. With this amendment, parents would be given the chance to discuss their views openly with the clinicians and hear the views of those clinicians, too.

Too often in my career, I have heard distressed parents described as “difficult” and “impossible to work with—nobody can work with them”. These are grieving parents who are looking for someone they can trust to help them. Mediation can sometimes help parents, and professionals to acknowledge that the consequence of conflict has been to shift focus away from the needs and welfare of the child. An independent mediation process can help to facilitate less confrontational conversation while supporting both parties. Thus, it provides support for both. Mediation across England is inconsistent. It needs to be available in every NHS hospital where conflict emerges, and at an early stage, so that the lives of very sick children such as Charlie are less likely to escalate to court.

In the rare event that a child’s case escalates to court, the amendment seeks to provide access to legal aid to ensure that families are not burdened with the financial strain of legal representation. Currently, families in this position are effectively punished, both financially and emotionally, through litigation for simply doing what they strongly believe is in their child’s best interest. Although this amendment makes provision for legal aid, the main purpose is to keep cases such as Charlie’s out of court, rather than arming everyone to be prepared to enter into long-winded and expensive legal disputes. Parents would not automatically win the right for their children to be given novel treatment, but the amendment would rebalance the dialogue towards resolution, rather than towards costly and distressing legal battles that do nothing to help the parents’ grief.

I also strongly support the introduction of the significant harm test. This legal test would focus on whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm” when deciding whether a parent can seek that treatment for their child. A key point here is that no medical professional would ever be required to give care or treatment that they did not view as in the best interests of the child. The legal test is already widely used under the Children Act 1989 and should be applied to cases such as Charlie’s in the future. I am strongly in support of this amendment and commend it. It is a just and necessary package to support parents and doctors, and I hope the Minister will be in a position to welcome it.

My Lords, I have also put my name to this amendment. I congratulate the noble Baroness, Lady Finlay of Llandaff, on bringing it forward.

We need a broad debate on the balance of responsibility for children as between parents and the various arms of the state. Sadly, these have come to include the medical profession. Today is not the day for that debate, but this amendment does something to give a voice to parents who find themselves in dispute with doctors, often unaided, unsupported and dependent on voluntary contributions, so that they have at least a voice and a status in decisions about their sick child. I very much hope that the Government will be able to support this.

My Lords, I do not very often become involved in health matters, so I hope that your Lordships will indulge me on this occasion.

Five years ago, when Charlie Gard’s parents were doing everything they could to fight for his life, I, like everyone else, was moved by their determination. Even so, my instincts were to accept what the Great Ormond Street hospital doctors were advising and what the judge decided was in Charlie’s best interests. I fall into the camp which believes that, in such an unimaginable, heartbreaking situation, the objective and dispassionate professionals are best placed to make a decision that no parent would ever want to have to make for themselves. When Charlie sadly died, I was moved by his parents’ dignity in coping with their heartbreak in the midst of a legal battle and in the full glare of publicity. Probably like many others who felt so sorry for their loss, I soon moved on and thought little more about this tragic case.

Then, just over a year ago, during the Christmas lockdown, when I was out on my daily walk, I heard an interview that Charlie’s mother, Connie Yates, gave to Andy Coulson on his podcast, “Crisis What Crisis?” For well over an hour, I listened to Connie tell her story. She spoke clearly, intelligently and reasonably about their experience as a family during the year in which Charlie lived, and about all that she and her partner, Chris, went through in their fight to be heard and taken seriously by doctors and lawyers. From listening to Connie, I learned that their expectations were well-informed and reasonable but that as the dispute continued, the situation became increasingly fraught and distressing —to the point where their efforts to be heard as parents made them feel that others believed they were guilty of not wanting the best for their baby. Even so, she was at pains to praise all the medical staff who had cared for Charlie at Great Ormond Street.

Towards the end of the interview, Connie told Andy Coulson that a Private Member’s Bill was being sponsored by the noble Baroness, Lady Finlay, that would bring to life what she called “Charlie’s law”. The noble Baroness has described this law. When Connie talked about it, I was struck by how modest and reasonable it is to create a legal framework to allow for resolution, without the added stress and trauma that they had faced during the time when they were fighting for Charlie. It also struck me very powerfully that, in developing this framework, Connie had taken the time to contact and listen to the doctors who had opposed her, so that she could better understand them and their position. That is worth emphasising again: this young woman is so reasonable that she wanted to create a law that would work for the benefit of the medical profession, not just parents.

As I finished listening to Connie, I vowed that I would support that Bill whenever it appeared. But as we know, Amendment 287 is here in lieu of that Private Member’s Bill, and arguably is a better way to introduce this measure, rather than having to battle with the usual procedural risks that are associated with private Members’ legislation. I am delighted to lend my support to this amendment. I am sure there are technical matters within the amendment which might require discussion between the noble Baroness and the Minister, but I urge my noble friend to take this seriously.

Given the ordeal that Charlie’s family faced a few years ago, when no one in authority listened to them, I am sure it would bring them a huge amount of comfort to know that they are being heard now. That is my main point and motivation today. Of all the things we must do if we are to level up this country, listening and taking seriously people who feel ignored or misunderstood is the most important aspect of that agenda, and in this context it costs us nothing.

I also say to Connie Yates, should she be listening today or read the record subsequently, that she is one impressive woman. When I heard her speak, and listened to what she had to say, she changed my mind and made me realise I had been wrong not to listen more carefully a few years ago.

My Lords, I welcome the amendment put forward by the noble Baroness, Lady Finlay, and will make what have been described as technical points. While I think this is a very good base, there are some things that I think need looking at.

I trained as a commercial mediator some years ago, and practiced for a couple of years, before I was signed up by David Cameron to do a different job. The first point I make is that there is a difference between commercial and family mediation. It is important to realise that. I notice that the amendment says

“where the authorities consider that the difference of opinion is unlikely to be resolved entirely informally”.

I suggest that it cannot be the authorities that decide; it has to be offered equally to both sides. That is why it will not be appropriate for the authorities to provide the mediation service. There are a couple of good, independent mediation services, including the Centre for Effective Dispute Resolution and the Alternative Dispute Resolution Services, but if it is to be a system which has the confidence of both sides, it must be independent of the authorities.

The next point I would like to make is this. There is a big difference between family and commercial mediation, and the difference is fundamental. Commercial mediation produces a legal, enforceable result; family mediation produces an agreement which has no legal force. One of the points which must be addressed if this is to be brought to fruition is what is to be the status of the mediation agreement. That is fundamental.

I was a commercial meditator and in East Anglia, where I was, we had a practice of commercial mediators going out also with family mediators to get an experience of the full area. One of the most distressing points about family mediation was the way in which families would bicker, eventually reach some sort of compromise, and, before you were through the door, decide they were not going through with it. If mediation is to work, it will have to have some sort of resolution at the end where the medical profession and the family can say, “This is settled”—not where one side can say, “Well, I don’t really like the outcome”. This could be the case, particularly in a complex medical situation, where you have a number of doctors involved and maybe two or three of them are part of the mediation but there is then someone further up the line who says, “No, I just don’t accept this”. There has to be a dispute resolution which has a legality about it.

The next point I want to make is that the NHS, as we have heard in other debates on this Bill, is a terribly litigious place, and I am afraid that we need to take care that we are not opening up yet more cases for the Medical Defence Union and medical defence solicitors. I speak from very limited experience here, as I have a sister-in-law who is a retired medical negligence solicitor. As we all know, around the country there are companies of medical negligence solicitors. Their money is funded from the National Health Service through encouraging people to take legal action whenever possible. No general practitioner ever proceeds without his MDU cover, because it is just not safe to do so.

So we also need to look at the way in which the legal profession will get involved, and that, I am afraid—noble Lords will probably expect this from a Conservative—means that we have to look at the way in which the legal aid fund is able to be used. It cannot be an open fund; it will have to have some limitations on it. It is not for me to suggest what they are, but it is for me to suggest that they will be needed at some point.

The next point we have to consider is that when I was doing mediation it was much cooler, because commercial mediation is really about financial disputes between you and your builder. If you are doing this sort of mediation, you have to recognise that some people will go into it determined not to settle, and a mediator cannot force them to settle. There are not many such cases but, even in the area I worked in, in something like 15% of the cases you could tell within the first five minutes that they were there for an outing, not a settlement, often—this was the crucial thing—because emotional considerations had taken hold of the day. They were there because they did not like something or they wanted to get their own back, et cetera, and the mediation was never going to work.

So we need to look at the way in which people are referred to mediation, because it will not work if it is forced. If you say to a couple, “You’ve got to go to mediation”, they may well say behind your back, “Oh well, I suppose we’d better go through with it, but we don’t have to make it binding”—and they do not, of course, because the whole essence of mediation is agreement between two conflicting sides. We have to recognise that you cannot force people to mediation and that, just as the authorities can decide that it might be appropriate, it will not be appropriate unless both sides agree with it.

I say these things not to pour cold water on the amendment, because I think it is very worth while. This path could aid a lot of families, but my view of this clause is that it still needs quite a lot of work. I hope the Minister will be able to say, “We think this is probably a good way forward, but we need to look closely and further at it and discuss with the noble Baroness how we can make this system actually work”. A number of technical problems will have to be looked at, and overcome, if it is to be anything other than a clause in a Bill that never gets off the ground.

My Lords, there is considerable merit in an independent dispute resolution service. I will be very brief, because I believe that at the heart of this is the following: for over two decades, this country has been a signatory to the UN Convention on the Rights of the Child, which recognises that a child has its own rights, independent of its parents. So I was very pleased to hear the noble Baroness, Lady Finlay, refer to the best interests of the child, which will be based on their rights under the convention.

My Lords, I thank the noble Baroness, Lady Finlay, for this amendment and other noble Lords who have contributed to this highly emotional and compelling debate about the welfare, care and medical treatment of critically ill children. I also thank Emma Hardy MP for ensuring that this key issue was debated in the course of the Bill’s passage through the Commons and the work that she, other MPs and noble Lords have undertaken with parents and medical staff to help build and develop the framework that is set out in the amendment where care and treatment are disputed: Charlie’s law, in memory of Charlie Gard.

The amendment seeks to mitigate conflicts at the earliest stages, provide advice and support, and improve early access to independent mediation services to prevent the traumatic and bitter legal disputes that we have all seen all too often. Noble Lords have highlighted these, as well as the benefits that the step-by-step processes set out in the amendment would provide for parents and doctors, which are of course central to the consideration of the child’s welfare and best interests. In particular, providing families with access to legal aid if court action takes place would, as the noble Baroness, Lady Finlay, pointed out, ensure that they do not have to rely on raising funds themselves, or on the financial support of outside interests.

Today’s debate has been powerful but has also demonstrated the difficulties with trying to address and resolve such deeply complex issues within the context of an already overloaded and skeletal Bill. Like other noble Lords, I have received the excellent briefing from the Together for Short Lives charity, which does such remarkable work on children’s palliative care to support and empower families caring for terminally ill children. While supportive of much of the amendment, the charity has what it terms “significant reservations” about proposed new subsection (4) on the issue of amending the court’s powers in relation to parents pursuing proposals for disease-modifying treatment for their child after the final court decision.

So, while there is obviously considerable support for the measures set out in the amendment, as we have heard today, the reservations about this and other provisions in the amendment, from Together for Brief Lives and other organisations, emphasise the need for the continued dialogue and discussion that we are not able to have today but which noble Lords have made clear is needed. This has been an excellent debate and I hope the Minister will be able to find supportive ways of taking this vital issue forward.

My Lords, the noble Baroness, Lady Finlay, has brought a vital and sensitive debate before the Committee, for which I for one am very grateful. At the heart of each of these difficult cases is, as she said, the well-being of a child, and that principle has to remain uppermost in everyone’s mind. While the views of parents and guardians are routinely considered in everyday care, occasionally difficult disputes will arise. When they do, we should carefully consider how best to protect the interests of the child. I will start by saying that I fully agree with the noble Baroness that any failure to listen to the concerns of parents or a guardian would be bad practice.

However, I have a concern about the practical impact of this amendment. In cases of the care of children with life-limiting illnesses, the amendment would place the views of parents and guardians above those of clinicians and—let us be clear—the courts, which have a statutory obligation to act in the best interests of the child. Establishing a default presumption in favour of the parents’ views would fundamentally change the current balance. It would move away from the impartial assessment of the individual child’s best interests being paramount based on all the evidence in each specific case.

I understand the view that parents know what is best for their child and their wishes should be paramount. Sadly, though, I am afraid that I cannot fully agree with the proposition advanced in the amendment. It is sometimes the case that desperate parents in these tremendously difficult circumstances are subject to the flattering voice of hope and, as a result, are not acting in a way that is necessarily in the best interests of their child.

To protect the child, it is right that when every effort at resolution has been unsuccessful there is recourse to a judicial process that can impartially assess all the evidence as to what treatment is best for the child. I also fear that it would be difficult for a clinician to determine, in the wording of the amendment, “anyone else” who has an interest in a child’s care. In considering the provisions of the amendment, I note that a child’s medical data can already be provided to parents following a subject access request, so we do not feel that legislation here is necessary. I absolutely agree that specialist palliative care teams should be part of the multidisciplinary team for any child or adult with a complex life-limiting illness; their involvement is an integral part of good practice, and I would expect referrals in such situations. However, I do not agree that it is necessary to put that into law.

Let me say something about mediation. I listened with care to my noble friend Lord Balfe. We know that mediation can and often does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way. Unfortunately, that does not provide a solution in every dispute. The Government are supportive of the many excellent mediation schemes already available, including through charities and the private sector. We agree that parents and clinicians should be able to access such schemes where they wish to do so. However, we are not convinced that legislation is the answer to these thankfully rare but nevertheless tragic cases.

The current lack of statutory prescription means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. There is currently a wide range of work and research into avoiding such protracted disputes and improving the approach to managing conflicts, with the aim of promoting good, collaborative relationships between parents and healthcare professionals to seek resolution without lengthy and costly legal battles. Furthermore, on those rare occasions where disputes are heard before a court, the amendment seeks to extend legal aid. Legal aid is already available for best interests cases, albeit subject to a means and merits test.

I understand the strong views on the amendment across the Committee. I understand that these issues are ethically charged and I take them seriously. However, I also believe that the current approach properly balances the views of parents and guardians with those of clinicians and, above all, with the paramount importance of the best interests of the child in question. The sensitivities around this subject are acute but I hope that what I have said has clarified why I do not feel able to accept what I know is a well-intentioned amendment.

My Lords, I cannot hide my deep disappointment at the response from the Government, because I think this situation will only get worse unless we recognise the difficulty of decision-making when you are faced with a child whose prognosis is poor, who has a very rare condition, where nobody has a test to predict what will happen, and where the parents feel that they are not being listened to.

Currently in the NHS we have clinical teams that change rapidly. The one person—often—who has continuity and has seen the child day after day is the mother; sometimes it is the father who is with the child all the time. But you get different clinical teams, and you may have a gap of five days between one doctor visiting and coming back, and they may say: “Oh my goodness, what a change.” But when you have a handover, you do not get a complete picture.

My amendment aims to reset the balance and ensure that these parents are listened to, because at the moment they feel they are not adequately listened to and get labelled as “difficult”. I am grateful to my noble friend Lady Hollins for spelling that out, because I have seen it all too often: parents in anguish labelled as “difficult” or “angry”. They are trying desperately to explain a complex situation, to bring things to people’s attention and—sometimes—just to be seen by someone a little more senior that the clinicians who have been looking after their child. A child may go from one week to the next without even being seen by the consultant in the team in some places.

Also—I do not like to do this, but I want it on the record—I dispute the phrase “flattering voice of hope”, because without hope we might as well give up on everybody. It is because of hope that parents, such as those of Charlie Gard, find something that has an over 50% chance—nothing in medicine is 100% and there is no absolute—and want to try it. I too have had many conversations with Connie Yates and Chris Gard, and I am sure that if they had been told the chance was 5% they would not have pursued it. That contrasts with adults who will go after chemotherapy if there is even a 2% chance of success, because they are so desperate.

I am grateful to everyone who has spoken. The noble Baroness, Lady Masham, pointed out that this amendment aims to achieve agreement for everyone for the better. The noble Baroness, Lady Brinton, pointed out the costs not only in financial terms but in terms of long-term mental health. This lives on for the rest of the lives of these parents, who live with this, day in, day out, and wake in the night, remembering that they could not be heard. I am afraid to say the clinicians just move on to the next case—of course we do. I am a clinician, and I have seen hundreds of families who have been distressed and in dispute, because they want to be heard—that is all. This is about rebalancing the dialogue.

I am grateful to the noble Lord, Lord Moylan, and particularly to the noble Baroness, Lady Stowell, for giving us the most moving illustration of the background to this. Like her, I was sceptical before I met Connie Yates and Chris Gard in person and had in-depth conversations with them. I have been overwhelmingly impressed by them, and by other parents who have been in this situation and recognise the difficulties and dilemmas. They are often faced with a clinical team far younger than them, do not have children and do not understand the emotional involvement of parent and child.

I would like to have a conversation with the noble Lord, Lord Balfe. He raised many points which I will not respond to now because of time in Committee, but I point out that this is not about arbitration or looking back. It is about finding the best way forward from where we are now: whether we carry on with attempting treatment or we move the child home, whether we allow the parents to take the child abroad or decide whether to take the child off the ventilator. That is usually the point at which these decisions are being made—of course, if you take the child off the ventilator, they will be dead within a few minutes because they become anoxic. This is not about opening up medical litigation.

I hope we have worded this amendment well. I have had a lot of legal advice over the wording of this amendment and in light of the comments made I will go back to the legal team that have helped draw it up.

It is very sad that we are prepared to accept the situation as it goes on. I also put on record my deep disappointment that Together for Short Lives did not discuss its concerns with me before that discussion, and before that document went out. I have done a lot of work with it; I have set up paediatric palliative care and supported many hospices, and I am deeply disappointed that I did not hear from it prior to this debate. I say to the Minister that I intend to go back to the legal team, and I would like a conversation with the noble Lord, Lord Balfe. I will bring this back on Report with, I hope, a better worded amendment that the House can then accept, because we are heading for danger if we do not allow peoples’ voices to be heard in a system where we know that there is no time and currently no place for them to express their views. In the meantime, I beg leave to withdraw the amendment.

Amendment 287 withdrawn.

Amendments 288 and 289 not moved.