Health and Care Bill

Baroness Brinton Excerpts

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

[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

My Lords, I invite the noble Baroness, Lady Brinton, to speak remotely now.

[Baroness Brinton (LD) [V]]

My Lords, this amendment is a companion piece to the previous amendment on declarations of interest that we believe should be made by doctors and other regulated healthcare staff, and ensures that any companies involved in the production, buying or selling of pharmaceutical products or medical devices must publish any payments made to teaching hospitals, research institutions or individual clinicians. Whether someone wants to know about a doctor working with a pharma company, or the other way around, we need a system that provides a golden thread of transparency and accountability.

Reporting payments or benefits in kind by the relevant organisations and individuals receiving them ensures that the links between donors, recipients and their respective interests are always visible. Although it is, we hope, rare, this is more than just transparency. As in any walk of life, occasionally there is malpractice and fraud, which needs to be prevented. A register such as this helps to remind all those concerned of the rules.

I echo the comments made by the noble Baroness, Lady Cumberlege, that “may” is not strong enough: “shall” is important here. The noble Baroness also referred to the USA Sunshine register; and, as I said on the last group of amendments, we definitely need the disinfection of sunlight. Can the Minister say whether any such regulations on industry reporting might be published and brought into force?

[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

My Lords, I invite the noble Lord, Lord Howarth of Newport, to speak remotely now.

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[Baroness Brinton (LD) [V]]

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.

[Baroness Hollins (CB)]

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.

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[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.

[Baroness Hodgson of Abinger (Con)]

My Lords, Amendment 297A is in my name and those of the noble Baronesses, Lady Smith and Lady Cumberlege, but I am also supportive of the other amendments in this group.

With people living ever longer, looking after older people so that they can stay healthier for longer is critical, as is ensuring that they receive the care they need and have a dignified and secure old age. Amendment 297A seeks to introduce a new clause that will not only lower, from 75 to 65, the age at which every patient is assigned a named GP but sets out to ensure that named GPs will actually have to meet and have some knowledge of each patient they are responsible for, and will communicate directly with them and the family.

We need to encourage everyone to take responsibility for their health. Having good and regular health checks is an essential part of the prevention of ill health, as well as leading to earlier identification of conditions and earlier interventions. I am sure that other noble Lords who are doctors will put me right, but I was once told that 65 is an age where things can start to go wrong. Therefore, it is important to start monitoring people’s health and being able to identify changes from this age. This will deliver better outcomes and may also enable people to stay at home and lead a fuller life for longer. The role of the GP in all this is absolutely critical.

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[The Deputy Chairman of Committees (Lord Brougham and Vaux) (Con)]

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

[Baroness Brinton (LD) [V]]

My Lords, I am a former trustee of UNICEF UK and, before that, Christian Blind Mission, a global disability charity. I have seen first hand the two-tier system of access to global vaccines and medications. It is a pleasure to hear the noble Baroness, Lady Chakrabarti, set out how, through her Amendment 292, the UK can fulfil its global public health responsibilities for investment in research into vaccines and other health technologies and how, in an emergency, companies developing these goods would also be required to help. She has introduced it in her usual effective and persuasive way. I suspect I am not alone in valuing her contributions to your Lordships’ House.

Throughout this pandemic, the Government have rightly congratulated themselves on their investment in research on the range of vaccines developed in rapid time and also the extensive, rapid clinical trials assuring their safety prior to approval. However, less satisfactory has been the UK Government’s view about their international moral responsibilities as a member of the OECD and one of the high-income countries with access to much-respected vaccination and pharmaceutical research. The World Health Organization has said right from the start of the pandemic that no country is safe until all are safe, but low and middle-income countries have not just not had the advantage we have; we have reneged on our promises to them over the last two years.

The UK Government repeatedly tell us that they have donated cash to Gavi and COVAX, but the reality is that we need to help those countries now to become able to manufacture their own medicines and vaccines in the light of emergencies such as future pandemics. The old adage of “Give a child a fish, feed them for a day. Teach a child to fish, feed him for ever” is so true. Here, the fishing rod is the skills to manufacture and sell medications in a future pandemic.

The TRIPS waiver, or intellectual property waiver, is supported by the World Health Organization and many large charities and countries, including the USA and others. However, as we have heard, the EU, the UK and Switzerland are not in that bracket. Its intention is to increase vaccine production in developing countries by sharing intellectual property for vaccines publicly for the period of that pandemic. It is needed because the data for November 2021, nearly a year from the first vaccine being delivered, showed that just 4.2% of people in low-income countries had received their first Covid vaccine. Across Africa, 6.3% are now fully vaccinated. COVAX has shipped just one-third of what it had expected would be available by the end of October—those expectations were based on promises from high-income countries. Export bans, manufacturing delays and bets on vaccines that have not received regulatory approval have also held up deliveries. Worse, we know that in this country we have thrown away vaccines rather than redirect them if we chose not to use them at a particular time.

It is time that the UK took a leading role in fulfilling the World Health Organization’s call. Now is the time to make all countries safe, not just for Covid but in preparation for whatever future pandemics may occur, and make sure every country is safe in the future.

[Lord Campbell-Savours (Lab) [V]]

My Lords, I want to speak narrowly to subsection (5) of Amendment 292, where it refers to the waiving of intellectual property rights and the protection of undisclosed information, and also where it refers to the waiving of agreements, all in an effort to assist global manufacturing. It provides a peg for me on which to hang the holy question of inadequate vaccine supply arrangements for third-world countries and, in particular, the need for greater manufacturing capacity, which would be assisted under a system of global waivers.

Two weeks ago, there was an interesting contribution from the noble Lord, Lord Grimstone of Boscobel, where, in reply to my noble friend Lady Chakrabarti, he said,

“there is no evidence that waiving intellectual property protections would advance these objectives,”

those objectives being

“help with vaccine production and distribution.”—[Official Report, 24/1/22; col. 8.]

I simply do not understand the Minister’s logic. As I see it, it is perfectly possible to manage such manufacturing requirements under directly monitored, subcontracted, licensee production arrangements.

In the same exchange, my noble friend and I went on to call for the 100 potential manufacturers in Africa—indeed, my noble friend has done it again today—identified by a number of charitable organisations to be encouraged to produce a Covid vaccine in approved plants under the subcontracting arrangements I have referred to. The Minister in reply, quite rightly, appeared preoccupied by ensuring companies were able to continue with “innovation.” I totally agree on that. That is a laudable objective that we all support. However, what evidence is there to suggest that in an entrepreneurial world, production under the carefully constructed management arrangements I have suggested deters innovation?

My suggestion in my original contribution was that it is perfectly possible to produce a vaccine and its subsequent product variants in dedicated production areas in approved plants and specialist facilities under the quality control of personnel seconded from advanced-nation producers. That is what I am asking for in the questions I have been asking repeatedly. What is the problem? How can that possibly destroy innovation as Ministers are suggesting? On the contrary, it raises greater challenges. It is a spur to increased innovation and, additionally, profit-taking, which I recognise is an important factor in funding research and development.

With less than 10% of the population in the world’s poorest countries being vaccinated under current vaccination production arrangements, we are prolonging the pandemic by leaving the door open to new variants. New variants will inevitably appear in under-vaccinated populations or, more specifically, in under-vaccinated ethnic groups which, often through a lack of available, detailed knowledge and under peer pressure, remain unconvinced of the need for vaccination.

I simply cannot understand the commercial, political or moral logic behind a failure to sponsor vaccination production under the arrangements I have outlined. We in the UK could be leading the world through this crisis if my suggestion was followed. We have spent billions on support schemes, much of it, sadly, wasted and lost in fraud. We could have spent much of that on vaccine initiatives. I think we are missing a trick, but it is not too late, as these pandemics are here to stay in one form or another. I appeal to the Minister to free up the market and pursue the strategy that I, and others far more significant than I, have been suggesting in this debate.