Health and Care Bill

Baroness Merron Excerpts

Lords Hansard - Part 2 & Report stage
Wednesday 16th March 2022 Lords Chamber

What was amazing for this young boy called Paul is that the parents are now great supporters of that hospice. They are able to talk to other parents and say that mediation is the best way; please do not polarise when facing such deep problems.

[Baroness Merron (Lab)]

My Lords, this eminently sensible amendment sets out various considerations aimed at ensuring that there can be effective mediation when there is a dispute over children’s palliative care. There has been considerable discussion to bring this amendment to its current iteration and I pay tribute to the noble Baroness, Lady Finlay, for her efforts around this, having already secured a meaningful amendment to ensure that ICBs must commission the palliative care services they consider appropriate.

Your Lordships’ House is aware that this amendment and debate come out of the heartbreaking situation of Charlie Gard and multiple other cases like his. I therefore know that this issue has to be handled and considered incredibly delicately, taking into account the best interests of the patient receiving care above all others.

Balancing the views of clinicians and parents is intrinsically and incredibly difficult, and particularly challenging to codify in legislation. This amendment is a rational measure to move towards achieving a better balance and keeping matters out of the court, as the noble Baroness, Lady Finlay, referred to in her opening. We certainly support its intent and I therefore hope that the Minister’s response gives it due justice.

[Earl Howe (Con)]

My Lords, I first thank the noble Baroness, Lady Finlay, for having brought forward this important issue for debate and for introducing it in her characteristically informed and professional way. I assure her that I understand the issues she has highlighted and why she has done so. There is no doubt in my mind that the kinds of case that she has cited are extremely distressing and stressful for all involved, and can, on occasions, be contentious.

The Government agree that mediation is often a good route to take when there is such contention. Parents and clinicians should have access to high-quality, independent mediation schemes where they wish to do so. There are many mediation schemes available and we are very supportive of them.

The NHS already ensures access to mediation in many cases, and we strongly encourage it to continue doing so. But, at the same time, we need to ensure that those schemes are effective in the different contexts in which they are needed. Currently, organisations have the flexibility to offer mediation services earlier in a dispute or to prevent such disputes arising. They have the flexibility to tailor services specifically to the unique circumstances in which they are needed.

I hope the noble Baroness would agree that each case is unique. It is essential that everyone is able to have their voice heard, that there is a good understanding of different perspectives and that there is appropriate involvement of parents in decisions about the care and treatment of their child. Naturally, in that process, differences of opinion can and do arise.

The key to progress in this area is something deeply nuanced—human relationships. That is why I believe that, rather than legislation, our efforts are better directed at working together to develop systemwide solutions about how disagreements can be avoided or recognised early and, most importantly, sensitively managed. We need to ensure that in these difficult situations NHS trusts and staff are well equipped, well prepared and well supported to make that sure parents’ feelings and concerns are fully considered and supported, and that the relationship remains positive and constructive. We know that there are already examples of best practice and guidance but we need to do more.

To improve the outcomes of these difficult cases, we need to look at the whole process. We need to look at how best practice can be shared across the system to ensure that parents’ voices are heard throughout the process, not just in mediation, and how we can prevent disputes arising in the first place. In the rare cases when a dispute does arise, we need to focus on the quality of mediation schemes and not just prescribe that mediation is offered by default.

To look at how best we can embed best practice, training and advice on shared decision-making and dispute resolution across the system, the Minister for Patient Safety and Primary Care has agreed to chair a round-table event facilitated by the Nuffield Council on Bioethics. This will build on the work already being done by bringing together key stakeholders to agree actions that support the creation of healthcare environments that foster good, collaborative relationships between parents and healthcare staff. I have also offered to meet Connie Yates and Chris Gard to hear their experiences and discuss how we can support better collaborative relationships between parents and healthcare staff. I hope this demonstrates that the Government understand the importance of this issue and that we are committed to addressing it.

It is the Government’s view—I say this with some regret—that putting this amendment or another in the Bill will not help improve the outcomes of the very difficult, rare situations in which an unresolvable dispute arises. This is because efforts need to be focused on a holistic approach to dispute resolution to improve the process as a whole. Merely allowing for mediation to be available at the end of a dispute will not do this; either party could refuse it and allowing mediation will not, we think, drive the careful, sympathetic and considered work with parents and carers that this topic so urgently demands.

I recognise that these are difficult matters, but I think progress will best be made through practical, down-to-earth work across the system and by bringing in a wide range of perspectives. This is what I am now offering and I therefore hope that, in reflecting on that offer, the noble Baroness, Lady Finlay, will feel able to withdraw this amendment.

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[Lord Touhig (Lab)]

My Lords, I welcome the Minister’s statement—it really is very welcome—and declare an interest as a vice-president of the National Autistic Society. I also thank the noble Baroness, Lady Hollins, for her dedication, commitment and sheer endurance in pressing this matter of ensuring that those who support people with learning disabilities and autism are well trained. Training is essential if we are to help young people in particular to experience the kind of life that all of us in this Chamber take for granted. With the right support, young people with learning disabilities and autism can enjoy that quality of life. I do not intend to detain the House, but I will just share with colleagues some of my experiences of young people who have succeeded because they have had the right support.

I met an 11 year-old boy with learning difficulties at a special school. He said, “You’ve heard I’ve got learning difficulties?” I said yes. “My brother has too,” he said. “He is five; he’s got autism. I’m helping my mother help him.” I said, “Oh, that’s good.” “I’m off to comprehensive school,” he said. I said, “That’s good. Are you looking forward to it?” “Yes,” he said, “and I’ve decided on my career.” I said, “What are you going to be?” “I’m going to be a High Court judge, and I can tell you now, if you come up before me, you’ll get a lenient sentence.” The point is that the school had really worked hard, but the head said to me, “He worked hard too at overcoming these problems.”

I met Max at a joint meeting of the All-Party Group on Autism and the All-Party Group on Apprenticeships chaired by the late Dame Cheryl Gillan, who pioneered the Autism Act. Max worked for a housing association. When I went there, I could see how hugely supported he was, as he had been as a youngster, in his job by his colleagues. At that time, he was an amateur actor and had appeared on “Victoria Derbyshire”. That was then—now he is an actor, a producer, a public speaker, an ambassador for the National Autistic Society and a recipient of the Princess Diana award, awarded to changemakers for their generation. He has had that success because he had the right support.

Finally, I mention Louise—I have not met her; I have just talked to her. Louise had some difficult times early in her life. “You don’t look autistic,” somebody once said to her. She said that she was often humiliated by her teachers and those in authority, and when she tried to work, she had meltdowns and could not cope. She got her first job in her mid-40s. She is now working for a charity supporting people with autism, and she said to me, “Now I’m given the space, and they let me lead and I can flourish. I’m helping other autistic people improve their lives.” With the right support, quality of life has been given to that woman, now in her 40s.

My point is simple: given the right support and encouragement, people with learning disabilities and autism can have the same quality of life as we all in this Chamber would expect for ourselves and our families. I welcome the Government’s decision to support this amendment. There is still much work to do, but it is going the right way. I thank the Government, and especially the noble Baroness, Lady Hollins, for pioneering the work that we are talking about this evening.

[Baroness Merron (Lab)]

My Lords, I congratulate the noble Baroness, Lady Hollins, on bringing forward such a wise and sensible amendment, which follows a series of failings in the healthcare system, failings which might have been prevented if health and social care staff had had the proper training to meet the particular needs of those with autism and learning disabilities.

I consider this amendment to be about fairness—those with autism and learning disabilities may be treated as anybody may expect to be treated. I thank the Minister for her very positive response, and her and her team for working so closely with the noble Baroness, Lady Hollins, and others to achieve the training of the relevant staff and to ensure a voice on integrated care boards. This is a fitting and lasting tribute to the memory of Oliver McGowan, and I am sure that it will always be regarded as such.

[Baroness Hollins (CB)]

My Lords, I am very grateful, and I know that Paula and Tom McGowan will also be very grateful—as will many people with learning disabilities and autistic people—to the Minister and to all those working behind the scenes for reaching this point and accepting my amendment, as well as for committing to include a learning disability and autism lead on integrated care boards.

I understand that some small changes may be proposed to ensure workability. I look forward to working with the Bill team and Department of Health and Social Care officials to ensure that these changes further strengthen the intention behind Amendment 176. I thank noble Lords for their support.

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[Lord Lucas (Con)]

My Lords, I entirely support my noble friend Lord Moynihan when he asks for proper accountability. That is what drives the few examples of successful cross-departmental co-operation. One of the recent missed opportunities is Defra not picking up on aspects of the Glover report that deal with people getting out into the landscape. To make a difference to that, Defra has to care and it has to be brought to account, but there also has to be a good enough mechanism to ensure that if Defra does propose to do something, someone is going to fund it. That would certainly apply too to schools’ collaboration with local sports clubs. Parents up and down the land want that to happen. But how is that going to be afforded? How is that going to be made to happen? Who is holding the systems accountable? There has to be some system whereby accountability and interest flow through—as my noble friend said, ideally, to Parliament—to make that happen.

I have written to the Minister on perioperative care, which is another example. How does the NHS collaborate with all the other people who might provide the support required for effective perioperative care? They are not in the NHS; it does not work that way. You can have a system that just involves spending the money and ticking the box because that money has been spent; or you can have one with real accountability, in which people care whether you get the results and are measuring that, and who feed that through to someone with a central interest in things. So I am really going to listen to the Minister with great interest on this.

[Baroness Merron (Lab)]

My Lords, I want to thank the noble Lord, Lord Moynihan—along with the noble Baronesses, Lady Morris and Lady Grey-Thompson, and the noble Lord, Lord Addington—for bringing forward this important amendment. It does strike me as strange that the UK does not already have a national plan in place to promote sport, health and well-being. If we are to tackle the acute obesity crisis in this country, a joined-up, forward-looking strategy at a national level is necessary. From these Benches, we support this amendment wholeheartedly. It offers huge potential to tackle obesity, poor mental health and a sedentary lifestyle in a joined-up way that sees people as whole people with different pressures and needs, but with the intention of focusing on prevention. So, I hope the Minister will be able to respond positively tonight.

[Lord Kamall (Con)]

I begin by thanking the noble Lords who initiated this debate tonight and my noble friend Lord Moynihan, the noble Baronesses, Lady Grey-Thompson and Lady Morris of Yardley, and the noble Lord, Lord Addington, for meeting with me yesterday, and with the Bill team and representatives from the Department for Education and DDCMS. What was really interesting was the experience that all four brought. The noble Baroness, Lady Morris, talked about her experience in government and how it was sometimes difficult to get departments to talk to each other, even though they all seemed to agree. We had two former Olympians, who spoke about their experience of elite sport. But how does that translate into grass-roots sport? How do we make sure we get people active?

What was also really interesting was when we spoke about the 2012 Olympics. Yes, we had them and there was some legacy of redevelopment in east London, but they did not really lead to a legacy when it came to physical activity. How do we make sure we avoid the so-called Wimbledon effect? We all know that effect: around the time of Wimbledon, you cannot get a place on a tennis court, but a few months later it is simple to do so. How do we make sure this is long term?

If you are going to tackle obesity, yes, we can reformulate food and look at other issues such as taxes and negative externalities to discourage the intake of calories. However, you also have to burn off calories at the same time through activity. It does not have to be elite sport. We are not all going to be Olympians—like the two noble Lords here who were—but that should not stop you. All too often, what happens at school level is that if you do not get into a top team, you give up because you are considered not good enough. It does not matter how good you are; it is the activity that counts.

The Government’s recent response to the National Plan for Sport and Recreation Committee report addresses clearly, we believe, the recommendations made in this amendment. I hope that noble Lords will take some reassurance from what I am about to say and the fact that we take this seriously. The Government agree with the committee’s overarching recommendation on the need for an ambitious national plan for sport and physical activity. We are firmly committed to increasing sport participation and physical activity levels, and to ensuring that everyone has access to opportunities to get active. It should not just be about elite sport.

I can confirm that the Government will set out their forward-looking strategy for sport and physical activity later this year. It will look at tackling levels of inactivity as part of our plan for recovery from the pandemic. We hope that this strategy will provide a unified, cross-government approach to driving participation, integrating with Everybody Active, Every Day, the School Sport and Activity Action Plan, and Sport England’s new strategy Uniting the Movement. Of course, while setting out a cross-government strategy will be welcome, it is equally important to set out information on the implementation. I can confirm that the strategy will set out further detail on implementation, including how to harness such action across government and between departments.

The Government understand the concerns that noble Lords have raised and recognise that previous Governments of all parties have not always got it right. They tried—it was not for lack of trying—but it is about the implementation and strategies in this area. However, we believe that lessons have been learned and I hope that our approach will have the intended positive impact.

After the conversation yesterday with noble Lords, during the post-meeting debrief I spoke to the officials from other departments and asked, “How can we make sure that this is truly cross-government?” Let me assure noble Lords that other departments have also been looking at this issue. The Department for Levelling Up, Housing and Communities and the Department for Transport also have important roles in helping to create health-promoting and more active local environments. I reaffirm the Government’s commitment to working cohesively on such actions.

I also assure your Lordships that departments involved in the sport and physical activity strategy take their responsibility to co-ordinate extremely seriously. This is being led by DCMS while, more broadly, the Government understand the utmost importance of getting this right—and we must not lose that. That is why I am delighted by the leadership of the Prime Minister on the Health Promotion Taskforce, supported by the Cabinet Office. That will enable the Government to consider all options open to them. I will come to this in due course.

The Government recognise that it is important to provide updates to both Houses on the progress of the strategy and will publish arrangements for that reporting in the strategy. I also assure noble Lords that the Government invite and welcome the continued scrutiny of plans to address inactivity, to promote sport participation and to improve people’s health through physical activity. Undoubtedly, the relevant committees in the House of Lords and the House of Commons will have an interest in any future strategy and its progress. I am sure noble Lords will also want to continue to ask Questions of Ministers.

We recognise the deep experience of noble Lords in this area and I know that that interest extends to the other place. Only last night, my honourable friend Gillian Keegan, the Minister of State for Care and Mental Health, responded to an adjournment debate on physical activity and health. On that point, I reiterate and acknowledge the benefits and importance of promoting that. We know the gains made in activity levels in some key populations, including women and older adults, before the pandemic have now been reversed, and the Government share the concerns of noble Lords on this matter.