Health and Care Bill

Baroness Hollins Excerpts

2nd reading
Tuesday 7th December 2021 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I declare my registered interests, including my presidency of the Royal College of Occupational Therapists and the Royal Medical Benevolent Fund, and my chairmanship of the oversight panel reviewing the care of people with learning disabilities and autistic people who are being detained in long-term segregation. I plan to make five short points but, first, I welcome the encouraging maiden speech of my noble friend Lord Stevens of Birmingham, and I am glad that he highlighted the importance of mental health.

I introduced an amendment to the Health and Social Care Act 2012 with support from many noble Lords, including my noble friend Lord Patel. It committed the Government to parity for mental and physical health and illness. Some progress has been made, but not nearly enough. The Royal College of Psychiatrists suggests that there is scope to extend the commitment to mental health in the Bill across all levels of NHS organisation, including on integrated care boards. I agree.

My next point is that getting it right for people with learning disabilities would be a litmus test of how far we have made adequate and safe provision for everyone. That is what addressing inequalities is about. People with a learning disability face many barriers which contribute towards premature and avoidable mortality, including discrimination, such as the inappropriate application of “do not resuscitate” orders; or existing legal duties not being met, such as providing reasonable adjustments or meeting requirements of the Mental Capacity Act.

I support the proposed new legal duty on the CQC to assess the performance of local authorities in discharging their regulated care functions under the Care Act, as recommended by the Health and Social Care Select Committee. Mencap suggests that there should be a specific duty on ICBs to take account of the needs of people with learning disabilities. This goes further than the recommendation in the autism strategy, which is simply for a named learning disability and autism lead.

My third point is about education and research, both of which are essential to recruitment, retention and equality right across all care, well-being and health services. I will focus on education for a moment. Education is central to reducing discrimination and removing the barriers to equal access. The Government have stated their intention to introduce mandatory training in learning disability and autism for all health and social care staff. This recognises failings in existing mainstream health and social care training. Furthermore, an annual turnover of nearly one-third of all social care staff is a shocking waste of human resources. I would support meaningful training and valued career pathways, especially for direct care staff. We could learn such a lot from countries such as Germany.

If we do not plan for future generations by making children and families central to this legislation, including families with disabled children, we are letting down future generations. Beginning with the first 1,001 days, from conception to the age of two, would build the foundations needed for lifelong health and well-being.

Finally, care is not secondary to health but fundamental to it. The current system is often too mired in bureaucracy, with budget wrangling leading to poor service provision and poor outcomes. In my view, we urgently need a national care and health Bill that is genuinely integrated. It should see people of all ages as whole people whose mental and physical health and well-being cannot be divided up into packages, having been thought about and funded from within different organisational structures.

This Bill is an opportunity to bring true integration between health and social care and between mental and physical health services and to improve outcomes for everyone. We should also remember the social determinants of health, the role of the voluntary sector and the informal elements of care and well-being. I hope the Minister will consider my points as the Bill progresses, and I would welcome a discussion around supporting the amendments required to enable them.

Health and Care Bill

Baroness Hollins Excerpts

Committee stage & Lords Hansard - Part 1
Tuesday 11th January 2022 Lords Chamber

The department has commissioned research and funded the National Academy for Social Prescribing and the provision of 1,000 link workers. It is not clear, however, that the department, NHS England or the Office for Health Improvement and Disparities have fully grasped the potential of creative health or that they mean to normalise creative health approaches within their vision and policies. I look forward to the Minister’s assurance that the Government do indeed intend this and will design integrated care structures to this end.

[Baroness Hollins (CB)]

My Lords, I start by declaring my interests as a past president of the Royal College of Psychiatrists and a former consultant psychiatrist and clinical academic at St George’s, University of London. I thank Mencap and the Royal College of Psychiatrists in particular for the discussions I have had with them about this group of amendments.

I will not list all my amendments and those I am supporting in this group. I say to my noble friend that this is not just a spine-stiffener; it is a reminder, because we forget about mental health. We still forget to think about it and talk about it. One of the things I often do in my career is put my hand up and say, “By the way, what about mental health?” The noble Earl, Lord Howe, will remember the debate 10 years ago; I will come back to that.

The issues covered in these amendments are not new, because the World Health Organization definition of health is about a complete state of mental, physical and social well-being. It is not just about disease and infirmity. Noble Lords may not be aware—I heard this only recently—that a psychiatrist represented the United Kingdom at the first WHO meeting, which is probably one of the reasons why mental health was included at that stage.

These amendments would require the Secretary of State and all NHS organisations to prioritise physical, mental and social well-being. The idea is simply to replicate the parity of esteem duty as introduced in the Health and Social Care Act 2012. I re-read some of my speeches on that Bill, and I can see that I was persuaded to withdraw some amendments similar to those I am speaking to today. While a significant first step, that legislation ensured only that the Secretary of State for Health and Social Care would promote parity of esteem. What we have seen since then is a better understanding of the importance of mental health and mental health services, but there is still a gulf between the financing and delivery of these two equally important services, with physical health continuing to dominate. Of course, they should not really be separate, because there is no health without mental health. Integration is fundamental; we debated that at length in 2011-12 too.

The Royal College of Psychiatrists referred me to data published by NHS Digital last year. In March 2021, there were more than 400,000 referrals to mental health services—the highest ever recorded in a calendar month, and 36% higher than the beginning of the pandemic in March 2020. The pandemic has indeed shown us the importance of good mental health for the general population, including, of course, children and young people and health and care staff.

One of my amendments is on the duty of parity of esteem, and others insert “physical and mental” in multiple places to embed the fuller meaning of “health” in the Bill. I am grateful to noble Lords who are supporting this.

I want to focus on my Amendment 99, which places the duty to ensure parity of esteem at the integrated care system level. We cannot really leave it to chance; history tells us that this would lead to a suboptimal priority for mental health services. The duty that has been in place at national level for the Secretary of State has been so valuable that we can and should replicate it at a local level. Consider a recent survey by the Royal College of Psychiatrists in which two-thirds of respondents said that their ICS had not worked towards parity of esteem effectively. Fewer than one in 10 thought that their local area was effectively promoting parity of esteem.

But if a population health-based approach is core to ICSs’ planning and decision-making, I suggest that we need stronger legislative levers to support them to address mental health. Mental health is a key population need across the country. We cannot presently meet demand. No population health approach is complete without the inclusion of mental health, and yet we consistently see the imbalances in place. The new ICSs, bringing together commissioning and provision, could be a huge opportunity to get it right—or, certainly, a lot better—for mental health.

At present, there is no assurance in the Bill that mental health will be given equal precedence with physical health in integrated care systems or even by NHS England. My proposed duty for ICSs would help to ensure parity and repeat the success of the duty on the Secretary of State in the 2012 Act—not only that, but such a duty also increases focus at service level and would make sure that ICBs are looking closely at how they are providing for people at risk of or with a mental illness.

The trouble is that it is not easy to determine the best way to achieve this. As it stands, the Bill does not address parity at all. There are other similar amendments. Would putting this duty at the local level ensure that the next step in the battle for parity of esteem will be closer to the everyday experience of people who have struggled for far too long to access mental health services? Developing good integrated care cannot be just about meeting a person’s physical health. We must think more holistically about people’s psychological and social well-being, as mentioned by the noble Lord, Lord Howarth.

Turning to the amendments tabled by my noble friend Lord Stevens, which would strengthen transparency in mental health spending, he has a unique insight into the NHS and could not be better placed to advise on what improvements are needed in funding of our mental health services, particularly in accountability and transparency. The resourcing of mental healthcare is one—admittedly, only one—indicator of whether we have a chance of meeting the need and, we hope, preventing illness developing in the first place. We know that change is needed. There have been improvements in financing mechanisms. My noble friend mentioned the mental health investment standard. This feels important in light of the most recent spending review, in which, although there was a large funding injection for the NHS, mental health seems to have lost out again.

One wonders whether anyone remembered to ask the Treasury for additional funding for mental health. Having worked in mental health for so long, perhaps I may be forgiven for suspecting that it may have been forgotten once more. Last year’s uplift for mental health due to the pressures of Covid-19 was welcome but it was non-recurrent and those pressures have not gone away. Recent estimates from different charities that I have spoken to suggest that the overall share spent on mental health could go down in the coming year. We need these amendments to the Bill to make it clear that only when the Government and the NHS genuinely have mental health at the forefront of their efforts and are truly committed to parity of esteem, even in difficult circumstances, will we make good on the purpose of the NHS when it comes to the needs of people with mental illness in our society.

[Baroness McIntosh of Pickering (Con)]

My Lords, I am delighted to speak to this group of amendments, and I associate myself very closely with the remarks of the noble Lord, Lord Stevens of Birmingham, and the noble Baroness, Lady Hollins. I declare my interest in working for the Dispensing Doctors’ Association. I speak particularly to Amendment 263, in my name and that of the noble Baroness, Lady Tyler of Enfield, and Amendment 138, in my name and those of the noble Baronesses, Lady Tyler, Lady Watkins of Tavistock and Lady Bennett of Manor Castle.

All of us are touched by knowing or learning of those who suffer from mental health problems, and I express my disappointment as well to see that there has been no parity of esteem or parity of funding between physical and mental health. I urge my noble friend the Minister, when responding, to give a commitment, in the context of the Bill, to ensure that the role of the ICS and the other bodies under the Bill will make this happen for the first time in reality.

There are particular issues, as I have seen closely, primarily as an MP but also previously as a shadow Minister. In rural areas, particularly in isolation and where there are pockets of poverty, poor mental health is suffered particularly by those on low incomes and pensioners. The farming community, especially in times of hardship, has great difficulty in communicating anxiety and mental stress. Undoubtedly, the current pandemic has taken its toll, not just in terms of self-isolation quarantine but because many businesses, particularly small businesses, have collapsed, often through no fault of those who set them up.

The background to Amendments 138 and 263 is very closely associated with that of the others in this group. I thank and pay tribute to the excellent work of Anne Marie Morris, who moved these in the other place and is chair of the All-Party Group on Rural Health. I commend her work in this regard. As has been indicated, Governments of all persuasions over recent years have spoken regularly about their desire to achieve parity of esteem between mental and physical health, including in the NHS 10-year plan. However, for this to be meaningful, there must be a legal obligation in the Bill to that effect, supported by reporting mechanisms on inputs to the mental health system, in terms of money, people trained and training places, as well as outputs resulting, including the number of mental health appointments or services made available, uptake of those appointments and the outcomes—namely, the number of patients discharged from care.

--- Later in debate ---

Amendment 5 withdrawn.

[Baroness Hollins (CB)]

My Lords, I would just like to make a comment about my amendments. I want to accept the Minister’s offer to meet and to think about the best legislative levers. I think the mood of the House is that there should be some progress on this.

House resumed. Committee to begin again not before 8.37 pm.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 2 & Committee stage
Thursday 13th January 2022 Lords Chamber

I feel sure that the Government will recognise this, and I look forward to a positive response not only to my Amendment 38 but to other amendments in this group that aim to protect the interests of mental health services across the country.

[Baroness Hollins (CB)]

My Lords, it is a pleasure to follow the noble Lord, Lord Bradley, and I support those amendments with respect to mental health. My Amendments 27 and 39 would provide for the addition of an expert in learning disability and autism on each integrated care board and ensure that the learning disability and autism lead was a person with knowledge and understanding of what good health and support look like for people with a learning disability and for autistic people.

As a starting point, this proposal has already been pledged by the Government in both the NHS long-term plan and the autism strategy, the latter stating:

“We also expect that all Integrated Care Boards, which will be established by the proposed Health and Care Bill, will focus on autism and learning disabilities at the highest level, for example by having a named executive lead for autism and learning disability.”


The reason for the Government’s firm commitment is that people with a learning disability and autistic people are among those who stand to benefit most from the integrated approach that the Bill seeks to implement. These are people whose needs frequently span health and social care systems. They are one of the largest recipient groups in terms of cost of health and social care provision and therefore a cohort with one of the greatest stakes in the effective integration of these two systems.

People with a learning disability experience huge health inequalities—very relevant to discussion on the first group of amendments today. On average, the life expectancy of men and women with a learning disability is 14 and 18 years shorter than for the general population respectively. Thirty-eight per cent of people with a learning disability die from an avoidable cause as against only 9% in the comparison population. These inequalities have been hugely exacerbated during the pandemic, with death rates of up to six times higher than among the general population, according to Public Health England. People with Down’s syndrome were identified as being at as high a risk as the over-80s. Yet they have had inappropriate DNACPRs put on their hospital records without their consent and had catastrophic reductions in care and support during the past two years, which will take years to recover from. There has been much greater reliance on family carers, who are too often dismissed as difficult by poorly trained health and social care decision-makers.

It is not learning disability and autism that are the cause; it is the situation that they are in as a result of ineffective plans and ineffective responses to their needs. Learning disability and autism, as well as foetal alcohol spectrum disorder—a much underdiagnosed and poorly understood condition but related to the groups I am speaking about—are lifelong states of being, but they are unequal states of being. Having a learning disability or being an autistic person is not like having cancer. People with learning disabilities and autistic people also get cancer; they also have a much higher prevalence of mental health problems.

The work I am overseeing for the Department of Health and Social Care places the major responsibility for inappropriate and lengthy detentions in long-term segregation under the Mental Health Act at the door of commissioners. It is a commissioning failure in the main. Some commissioners have relied on the availability of crisis admissions rather than collaborating to develop essential community services, including housing and skill support, social prescribing of meaningful activities and other innovative wellness approaches.

This is an urgent appeal to the Government to clearly signal a requirement for competent and accountable commissioning for people with a learning disability and autistic people. There is a lot of money being wasted at the moment through very poor commissioning. Please can we get it right this time?

[Baroness Bakewell (Lab)]

My Lords, before I address my Amendment 28, giving my support to my noble friend Lady Thornton, I wish to endorse the other amendments that are calling for representatives of particular groups—we just heard mention of two. I particularly endorse all those, especially as I am taking rather an oblique approach to this debate, which is not reflected in the other amendments.

Last year, there was a report in America that, increasingly, hospitals there were closing. The report said that hospitals were seen as businesses; a fifth of hospitals in America are run for profit, and globally, private equity investment in healthcare has tripled since 2015. In 2019, some $60 billion were spent on acquisitions. Globally, that includes—indeed, targets—us and the NHS. Where does that affect us? Increasing inroads are being made into the National Health Service by Centene and its subsidiary Operose, which now own 70 surgeries around this country. From Leeds to Luton, from Doncaster to Newport Pagnell, from Nottingham to Southend and many more, Centene now owns and runs for profit surgeries formerly owned and run by NHS doctors. It is now the biggest single provider of GP surgeries in this country. It has further designs on the existing fabric of the NHS, seeking to have its representatives sitting on the boards of CCGs, making decisions about the deployment of NHS funding. This is a direction of travel that needs to be monitored and checked. Safeguards must be written into the Bill against this takeover.

Why does it matter, just as long as patients have good and free treatment at the point of need? What is the reputation of Centene in America? It is not good. Indeed, it is regularly embroiled in lawsuits from either patients or shareholders, and the sums are not small. In June last year, Centene had to pay a fine of $88 million to the state of Ohio for overcharging on its Medicare department. This is one of many. Since 2000, there have been 174 recorded penalties for contract-related offences against Centene and its subsidiaries. That enterprise is now active in this country and targeting our NHS. It is not a fit company to be part of our health service. I therefore ask the Minister for safeguards to be written into the Bill against such people being represented on our boards. When I raised this at Second Reading, the Minister replied that there was no chance of us selling the NHS. We do not need to: they are buying us.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 3 & Committee stage
Tuesday 18th January 2022 Lords Chamber

[Lord Scriven (LD)]

My Lords, if we were having this debate about any other service in the NHS, people would be aghast. Can noble Lords imagine the response if we said that your access to dental treatment would be determined by the number of books sold; that your access to maternity services would be based on the number of jumble sales held; or that, ultimately, your access to ophthalmology would be dependent on the number of cakes and coffees sold at an afternoon party? These examples are no different from that of specialist palliative care, a service that is meant to be from cradle to grave. The unfortunate reason why the noble Baroness, Lady Finlay of Llandaff, has had to table her amendment, supported by other noble Lords, is that, for too many years, promises have been given but the services have not been delivered because the NHS does not commission parity of service across England.

I know quite a lot of people who work in the health service who are decent, hard-working and genuine, but the fact is that palliative care is seen by too many as an add-on and not central to the services they are providing. I do not blame them for that because, unfortunately, that is the behaviour that sometimes happens when the NHS does not have a mandate to provide specialist palliative care and people think that the local charity shop funds it. The noble Baroness has had to table Amendment 52 because we need to be clear about what this service is. It is not about just those last few days or weeks; it is not about just putting someone in a hospice. It is about giving psychological and medical care and support throughout a whole process to people with a life-threatening illness or who are at the end of life. This service needs to be commissioned against a clear understanding and definition of specialist palliative care.

I agree with many noble Lords: people across this country have waited far too long for access to specialist palliative care funded by the taxpayer. This does not mean that some of the charitable work would not continue, but such care should be a right and a service, funded by the taxpayer, which says that people will be looked after from cradle to grave.

[Baroness Hollins (CB)]

My Lords, I applaud my noble friend’s continuing persistence and commitment in seeking proper recognition of the role of specialist palliative care within our health and care services. I speak with around 40 years of clinical and clinical academic experience, first in general practice but mostly in psychiatry, and as a past president of the British Medical Association. Cicely Saunders taught me as a medical student, and she inspired my interest in this area.

Other noble Lords have stressed the shortfalls—I will not repeat them—but we know too that certain groups face significant barriers in accessing palliative and end-of-life care. Marie Curie’s A Place for Everyone report found that this included people living in poverty, alone or with dementia, as well as people with learning disabilities. My own research in clinical practice has included a focus on end-of-life issues, including decision-making, for people with learning disabilities and autistic people. Most people with learning disabilities still do not get equitable end-of-life care, despite over a decade of inquiries and recommendations.

Personalising end-of-life care for everyone is in the NHS Long Term Plan. It must surely be enshrined within the duties of the ICSs. We have already heard about King’s College’s findings of a shocking lack of planning by the vast majority of ICSs. That is a problem; it cannot be left to chance. The truth also is that depression and anxiety are quite common among both those who are dying and those who are bereaved. From my perspective as a psychiatrist, I would say that we need palliative and end-of-life care to improve the experiences of both children and adults who are becoming bereaved. We know, for example, that adverse bereavement experiences in children, such as watching a family member dying in pain, are a predictor of difficulties in adulthood, in addition to affecting their educational achievements.

To achieve a comfortable death, it is imperative that the psychological distress of both the person who is dying and their nearest and dearest is understood and attended to, as well as any physical symptoms. This amendment should need no further discussion. Cicely Saunders would be horrified. I hope that the Minister will accept it. It would be a false economy not to go ahead with this provision.

Health and Care Bill

Baroness Hollins Excerpts

Committee stage
Thursday 20th January 2022 Lords Chamber

[Lord Farmer (Con)]

My Lords, my Amendment 57, which the noble Baroness, Lady Masham, has mentioned, is also supported by the noble Baroness, Lady Walmsley. I declare my interest as a director and controlling shareholder of the Family Hubs Network Ltd, which advocates for family hubs and advises local authorities on how to establish them. I am also a vice-president of the LGA.

In speaking to my Amendment 57, I would point out that in Chinese medicine you traditionally saw the doctor when in health. They were paid a retainer to keep you that way and, if you became sick, they would not be paid until health was regained. This speaks volumes about alternative health paradigms to our own. Even if we never go that far, the prevention of disease and the maintenance of health should be an overriding priority for the health service.

In placing the duty to prevent the development of poor physical and mental health directly under the duty to promote the NHS constitution, it is my intention to make it a similarly fundamental duty. Prevention is always better than cure. Yes, prevention is already mentioned in the Bill, for example in Clauses 5 and 16, and elsewhere in Clauses 20 and 59. However I do not consider that it is given sufficient weight, particularly given concerns shared with me by members of the Family Hubs Network.

Family Hubs Network members work with existing integrated care systems and note that the main issue faced by these ICSs is the management and throughput of the frail, elderly population to address bed-blocking and the onward delays to elective surgery. Hence they can lean towards an acute hospital reactive care model. Family Hubs Network members are already seeing the consequence of this with, for example, few if any ICS strategies focusing on population health through prevention and early help, especially for children and families.

Indeed, more and more ICSs are seeing community-based contracts swallowed up by the acute hospital conglomerates. They rarely, if ever, hold the necessary cultural understanding of community care, prevention and early help, and their interests do not lie in these. Children’s health services, which would ideally be delivered in the community, can be drawn into acute hospital structures which are more reactive than preventive in nature. Yet in some cases these very same services, such as continence, speech and language, allergies and others, are being delivered in community settings, close to families, through integrated family service hubs. Given that many of these health needs are also psychosocial and practical, accessing them from such settings enables families also to receive local authority-commissioned early help. This surely is integration in action.

My amendment also specifies that health services should be available in the community where possible, to improve access and help prevent conditions from worsening. A local-by-default approach would cut down the number of patients required to make prohibitively long journeys when a service could instead be delivered in a primary care or local authority setting. We need a reverse Beeching for healthcare, where we reopen community hospitals. Out-of-area specialist mental health hospitals, which remove people from the social networks which help them get better more quickly, were in the news again this week. Local units have closed and there is a lack of care in the community, even though this is a far less expensive option and the setting in which many prefer to be treated.

Returning to the issue of our ageing population, a reactive care model is completely unsustainable. Unless we focus on preventing big-ticket items such as diabetes, depression, anxiety and dementia—the list is endless—the cost of providing healthcare will keep going up year on year, by even more than it already does. A preventive paradigm would ensure greater ruthlessness about educating parents and healthcare workers about the psychotic effects of high-strength cannabis, for instance.

The eminent professor, Sir Robin Murray, recently said:

“I think we’re now 100 per cent sure that cannabis is one of the causes of a schizophrenia-like psychosis. If we could abolish the consumption of skunk we would have 30 per cent less patients”—


this was in south London—

“and we might make a better job of looking after the patients we have.”

In 2019, Murray’s research team reported in the Lancet Psychiatry their finding that south London had the highest incidence of psychosis in Europe and singled out cannabis as the largest contributing factor. He expressed concern that some liberal-minded parents would rather see their children smoking pot than drinking, without appreciating the potential associated dangers and the social and economic costs. These multiply with skunk, which is several times more potent than the drug they might have been used to in their day.

It is not just parents who need educating, including about higher-strength forms: experts say that cannabis addiction is treated by health professionals as a low-risk soft drug, yet, since 2005, there has been a 777% increase in the number of those aged 55 and over who need treatment for it. When cigarettes’ contribution to the development of lung cancer was firmly established, action to prevent smoking was taken despite it being fashionable and popular—more than 60% of adult males smoked; now that number is approaching 15%.

When there is incontrovertible evidence that something harms mental or physical health, a duty to prevent would mean that such damaging ignorance was no longer allowed to prevail. Ditto foot-dragging on access: mental health care in the community has been talked about since we began to close asylums in the early 1960s, yet it is still in the NHS long-term plan. I am keen to hear from my noble friend the Minister why prevention should not be given prominence as a duty in the Bill.

[Baroness Hollins (CB)]

My Lords, it is a pleasure to follow the noble Lord, Lord Farmer. I really appreciate his remarks about Professor Murray’s work and his interpretation of it.

This is a Bill about integration, but how much integration will it actually achieve? We have spoken many times about wanting health and social care to work better together, but there is a difference between collaboration and integration. The former achieves two separate systems that, while better aligned in, for example, their information sharing, still operate without particular reference to the other. Those who use both systems continue to straddle a divide between the two and, too often, fall between those gaps.

Integration, on the other hand, speaks of synergy and of systems that enable one another and close the divide between the two, so that people can move between them without the terrifying leap of faith that currently exists. This is what will truly make a difference for those who use these services.

Unfortunately, the Bill in its current form will struggle to bring about this true integration. It requires the production of only a health outcomes framework, which will simply entrench the divide between health and social care, as both will continue to pull in different directions with different objectives, which are often conflicting.

Currently, health and social care sectors work towards two different sets of aims: social care is led by the well-being objectives of the Care Act 2014, whereas the NHS is led by various objectives set out in documents such as the NHS constitution, the NHS Oversight Framework and the NHS Long Term Plan.

An integrated service would mark a major shift in how the two systems view their role in supporting those who use their services. For example, it could see the NHS adopting an approach that was informed by ensuring the independence of its patients in a similar way to the principles that lead the provision of care and support. The greatest problems have been caused when health and social care start to gatekeep their domains: I have had to speak too often about the abhorrent placement of people with complex needs in in-patient units far from home, as a result of catastrophically poor alignment of health and social care support to meet their needs locally. I declare an interest as chair of the Department of Health and Social Care-appointed panel to oversee the discharge of people with learning disabilities and autistic people who are detained in long-term segregation.

I want to thank Mencap and Skills for Care for briefings on my amendments in this group. My Amendments 85 and 88 would place greater emphasis on the provision and quality of social care services and on the integration of health and social care services. I also declare an interest as president of the Royal College of Occupational Therapists. This is relevant because occupational therapy is a health profession that is equally at home in the NHS and in social care, and because occupational therapists have a role in tackling long-standing health inequalities through community rehabilitation and in prevention.

The history of health and care integration is littered with a natural reflex towards health and the pressing political priorities of the day. The ICB is primarily NHS focused and will hold responsibility for strategic planning and monitoring of services against the needs of an ICS population, but the answers cannot all come from health alone. We are in danger of missing an opportunity.

A duty to promote integration must include adequate provision for both health and care by taking a holistic approach. The outcomes from one will impact significantly on the other. Viewing the duty to promote integration through a health lens alone limits our understanding of what social care has to offer—think back to the debate on my noble friend Lord Mawson’s amendment on Tuesday. In some areas, integrated care system planning seems to focus mostly on integration within healthcare and not on integration between and across health-led provision and social care. At present, provider alliances are largely acute trust led.

Let us take discharge co-ordination as an example. It is currently suboptimal, with too few care co-ordinators, a lack of social care representation and feedback in assessment decisions, and a neglect of the resources and expertise of voluntary and independent providers.

The staffing context is complex. According to Skills for Care, there are 17,700 organisations providing or organising care, delivered through 39,000 establishments. Some 41% of those are residential, 59% are non- residential and 68% are CQC regulated. More than 6,000 organisations have fewer than four employees. That is a very broad church of employers. Not only does it make it much more difficult to communicate but social care lacks the infrastructure of the NHS to disseminate and co-ordinate.

My amendments propose strengthened provisions for ICBs to consider how integration benefits and can benefit from social care. My Amendment 89 would require ICBs to develop and publish a health and social care outcomes framework at least every two years to ensure that health and social care services are properly integrated.

ICSs present an opportunity to co-ordinate services, improve population health and plan on a system-wide basis to attract and retain staff with the right mix of skills. The ICS role should therefore ensure that the right staff skill mix is available to deliver this singular vision, a vision of person-centred and outcome-based care through multidisciplinary teams operating with and around each individual. Integrated care would mean that people would only have to tell their story once to receive high-quality, joined-up and seamless care. The approach each system takes to workforce planning will rightly vary to meet local needs and requirements, but that does not mean that their workforce plans cannot be measured against a joint outcomes framework. In collaboration with partners, Skills for Care has developed principles of workforce integration which address the above points.

The aim of this amendment is to ensure that health and social care do not pursue two different sets of objectives but work to a common aim to underpin transformation. I ask the Minister to reassure the Committee on these points. I believe these amendments will be helpful.

--- Later in debate ---

[Lord Kamall (Con)]

These are all building blocks. I thought that might get a laugh.

In response to the noble Lord, Lord Hunt, ICPs were the idea of the Local Government Association, and we want to ensure that they work with the ICBs. Also, we must recognise that local authorities are accountable to their local electorates and fund many of the services for which they are responsible from local taxation. While we encourage local authorities and the NHS to work together as much as possible and pool their budgets where it is beneficial for local people, we are not mandating this, as this would probably require significant shift in how local authorities are held accountable for managing their money. One of the reasons why we have this strange ICB-ICP partnership is to ensure that it is at the right level and, beneath that, to have the health and well-being boards at place level. I sense the strength of feeling in the Committee, and I see the noble Baroness, Lady Hollins, giving a wry smile.

[Baroness Hollins (CB)]

I love this debate—it is brilliant—but it makes the point that this is an ideal opportunity to pre-empt a later Bill and get on with the job now where it belongs. Given the strength of feeling in the Committee, if we cannot reach a solution to this, I will bring it back on Report.

[Baroness Barker (LD)]

My Lords, I feel for the Minister in his position. He is right: people observing our proceedings will see us laughing, but in practice this is really serious. I talk to colleagues in local government who receive endless requests from the NHS to turn up to meetings and they do not go, and why? It is not because they do not think that it is important, but because local government has been hollowed out over the last 10 years to the point where it has very senior management and front-line staff, and does not have large numbers of people in the middle doing middle-management planning jobs that exist in the NHS. That was the reality before Covid and is the reality now. Each of those building blocks that the Minister is putting in may be some great stepping-stone to a nirvana for the NHS, but they are just another obstacle for local government. It is so important that we in this House are not tied to constituencies or particular areas of importance. Speak truth to power—to the Government. We are building something unsustainable that will not work.

--- Later in debate ---

[Baroness Hollins (CB)]

My Lords, I have some brief points to add in support of my noble friend Lord Low’s Amendment 56A, which the noble Lord set out so clearly, and also in support of the amendments tabled by the noble Lord, Lord Crisp. It is very clear to me that primary eyecare has lagged well behind other areas of primary care in terms of any commissioned schemes for children and young people who are not in special schools and for adults with learning disabilities.

My experience with my son sound very similar to those described so well by the noble Baroness, Lady Uddin. The similarities are quite extraordinary, and my heart goes out to her. This week my son went to see the optician. He is visually impaired; he has a learning disability and autism. Fortunately for him, the optician responded well to the request for some reasonable adjustments to be made—which are required by law, but perhaps not well understood in local high street opticians.

Some years ago I did some research with SeeAbility, and together we created a visual, word-free resource. I declare an interest here, because this was with the charity I founded and chair: Books Beyond Words. We created a story called Looking After My Eyes and I read this with my son before he went to his optician’s appointment yesterday. It helped him and it helped the optician. But we need targeted improvements in optical care for everybody with a learning disability across the country. For this reason, I thoroughly support my noble friend’s amendment.

[Baroness Bennett of Manor Castle (GP)]

My Lords, in the wake of such a hugely powerful group of contributions, mine is very much a supporting role and I will be brief. I can only endorse the contributions to the amendment put by the noble Lord, Lord Low, and what we have heard about why it is so urgent. I will speak to Amendments 112 and 218, to which I have attached my name.

I attached my name to Amendment 112 because, as I was looking through the amendments, it struck me as such a crucial one. It was one that, even at this stage, it was really important to have four signatures on to show broad cross-party support. I am afraid I did not go for Amendment 113 and the rest of the list as well, on the grounds that I thought my name was there enough already, but I think the rest are—if not technically, certainly practically—consequential on Amendment 112.

After I had done that, I received a briefing from the Royal College of General Practitioners, writing also on behalf of the Royal Pharmaceutical Society and the Association of Optometrists. I will quote one sentence. The college says:

“We think this is a classic example of where secondary care is at the centre of decision-making, while GPs and primary care are ‘consulted’.”


I think that reflects what the noble Lord, who has a great deal of expertise, said, and this is one amendment that is a total no-brainer.

Moving to Amendment 218, the noble Lord, Lord Hunt of Kings Heath, outlined the technical background to this and the statistics. The only thing I will add is that many think tanks, including the Health Foundation, the King’s Fund and the Nuffield Trust have produced information about how extreme the variation in availability of GP services is and how much effect that has on inequality. As the noble Lord, Lord Warner, said, if the Government have a levelling-up agenda, this also is surely essential.

The reason I was personally attracted to this amendment is that in my days as Green Party leader I travelled around the country a lot and quite often ended up meeting GPs, very often talking about public health issues. I encountered so many desperately hard-working, utterly committed people who were exhausted and felt that they could not retire or cut back their hours. They were wearing themselves to the bone because no one was coming to replace them. I felt that I needed to stand up and speak for those people.

Sometimes people think of this as something that affects rural or remote areas. However, the Norfolk Park health centre in Sheffield nearly closed last year because, after extraordinary efforts, it had been unable to find an extra partner to come in. As the noble Lord, Lord Scriven, knows, this surgery is a fairly modest bus ride from the centre of a major city. It is a purpose-built health centre and only eight years old, but it could not find a GP partner to come in. Eventually, after a great deal of public campaigning, the surgery remained open. That is a demonstration of just how broad this problem is, yet, as the noble Lord, Lord Hunt, said, there are parts of the country—broadly the wealthier parts—that have expansive GP coverage.

Something has to be done, but, like the noble Lord, Lord Hunt, I am not sure that the proposal here is exactly the right way forward. We often say that something needs to be done, but we really need to see something done here. As with so many of the amendments that we discussed this morning, the Bill we have before us is the chance to sort out an urgent problem that must be sorted out.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 1 & Committee stage
Monday 24th January 2022 Lords Chamber

[Baroness Verma (Con)]

My Lords, I declare my interest in the register. I am making a very short intervention just to talk about care workers. While there has been a great emphasis on the NHS, the crisis that the care sector is facing now is absolutely devastating. I was with care managers this morning, and they were wondering how they were going to manage the next few weeks, never mind the next few years. I urge the Government to understand that it is not just about added training and it is certainly not about planning for the future when the crisis is now. The crisis in the future cannot actually be estimated now, because we are in a crisis now.

So I urge the Government to look at the key issue around the sectors, and that is money. It is funding. We devalue the very people we expect to have value for in looking after the elderly, the disabled and those who need help. I came here not wanting to intervene today, but I was actually pushed by what I saw this morning with my care managers. They are absolutely struggling, trying to work out where they are going to find these magical beings who do not exist, because they have left the sector as a result of being so poorly paid, so badly treated and so deeply undervalued by everyone. I just wanted to put that intervention on record because, while we do need workforce planning, the problem is that we are so far behind the curve that it is going to take one mighty big plan to get this right.

[Baroness Hollins (CB)]

My Lords, I would like to follow the noble Baroness because my amendment relates to this issue. My Amendment 174 would require the Secretary of State to publish a report on the work undertaken to bring parity of pay between health and social care services.

When reflecting on the pandemic, it is clear that we owe an enormous debt of gratitude to our key workers, who went above and beyond the call of duty to keep people safe and healthy. Their efforts resulted in a deserved pay rise for NHS front-line staff. However, it highlighted the disparity between the treatment of healthcare staff and social care staff. While we clapped for both every Thursday, the gap in pay and reward between the two professions has grown even larger. This amendment reflects the undeniable need to see care staff recognised equally alongside NHS staff.

The social care workforce is, and needs to be, highly skilled. It holds a heavy weight of responsibility for the well-being and safety of vulnerable adults and children. Staff are trained to support medication, undertake PEG feeding, deal with seizures and administer first aid. They help people manage their finances, health and well-being, and they provide emotional support. They operate within a highly regulated sector, necessitating an understanding of health and safety, mental capacity and deprivation of liberty law, safeguarding and even how to positively manage challenging behaviour. The importance of their role cannot be underestimated. Indeed, the same can be said for other, highly skilled allied health professionals, such as nurses and occupational therapists, whose breadth of interventions provide enormous value within the care sector, as well as within the NHS. The turnover rate is just so high. It is unsurprising that staff such as nurses and OTs who can do so are more likely to seek better paid employment in the NHS.

A report recently commissioned by Community Integrated Care shows that many front-line workers in social care are financially “significantly undervalued” by as much as 39%—nearly £7,000 a year—compared to equivalent publicly funded positions. Social care struggles to match pay conditions available within the health sector, including pensions, annual leave entitlements and sick pay. That means that, when faced with the choice of working in either sector, individuals are more likely choose to work in health, if they can. We must help foster a culture of collaboration between the NHS and social care.

Skills for Care estimates that the adult social care workforce in England employs over 1.5 million people, yet there remains a major recruitment and retention crisis which, without intervention, is only likely to get worse. Currently, there are over 100,000 vacancies—that is around 6.8%—with projections estimating that nearly 500,000 new jobs will be needed to meet demand within social care by 2035. The turnover rate of staff is estimated to be over 30%, and higher still among those on zero-hour contracts.

Pay is not a panacea for addressing this issue. Much of it comes down to better wages being offered in other sectors which are able to use market forces to drive up employee pay. Furthermore, if terms and conditions are more closely aligned between social care and the NHS, staff may be able to move more easily between sectors, providing the continuity of care for their patients in the community, which is so valued by so many people.

Social care has been defined as a low-paying industry by the Low Pay Commission every year since the first report of the Low Pay Commission on the national minimum wage in 1998. The average pay for support workers in England who assist people to live independently in the community is £17,695, or £9.05 per hour, which is 45p per hour below the real living wage—that is the average. It seems nonsensical for a single system to have staff working at similar levels but some being paid significantly less than others. The Government have previously argued that, because of the existence of private providers in the care market, they cannot mandate a level of pay for care staff. But this just does not hold up to scrutiny: providers are paid an hourly rate for the contracts they are given by the local authority. This means that there is a conduit through which a fair rate for providers, and by extension employees, could be set.

The continued insistence that an increase in the national living wage is suitable remuneration for care staff does not reflect the level of skill and dedication that they display. While this may reduce the barrier to entering the adult social care workforce, we are still left with problems retaining what will go on to become a much more experienced workforce. There is very little incentive to stay in terms of pay promotion, and the experience pay gap has reduced even more, to something like 1% per hour in the past year. We must address this issue to support this workforce, now and for the future.

Higher pay and lower vacancy rates have been associated with more favourable outcomes during inspections by the Care Quality Commission, which is not surprising. Put simply, a stronger and more valued workforce improves patient care and retention. The demand for the skills of the workforce, now and for the future, means that ensuring parity of pay and conditions between the health and social care sectors is of paramount importance in the care, rehabilitation and protection of people who need this support.

I thank Mencap for a very good brief, Skills for Care for excellent statistics, and my noble friend Lady Finlay for supporting my amendment. I hope that the Minister will see its value.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 1 & Committee stage
Monday 31st January 2022 Lords Chamber

Compared with local authorities, the NHS has always lagged behind in the recognition of carers, yet the NHS depends, as we all do, on their contribution. The Minister has always done his best to acknowledge the carer contribution and their need for support. I hope he will do so today by accepting this amendment.

[Baroness Hollins (CB)]

My Lords, it is a pleasure to follow the noble Baroness, Lady Pitkeathley, and her powerful speech. I support the amendments in this group and will speak to my Amendment 225. First, I declare an interest as an unpaid carer myself, who has had to take on considerable additional caring responsibilities as a result of the pandemic. I enjoyed the description of the noble Lord, Lord Howarth, of the use of poetry, because it is certainly a new hobby of mine, which I found very helpful during those long months of caring.

Mencap’s survey from the first wave of the pandemic in 2020 found that four in five carers of people with learning disabilities were taking on much more care of such people in their families because of the loss of paid support and daily activities for their family members. For many, it will take many months, even years, to return to pre-Covid levels of paid support to support those carers.

During the pandemic, care and carers were often spoken about as synonymous with care homes. I found it very discouraging as an unpaid carer myself to think that it was so little understood in government communications about the pandemic. I tabled this amendment to ensure clarity regarding to whom the Bill refers when it uses the term “carers”. As the noble Baroness, Lady Pitkeathley, explained, it does this by providing existing definitions of carers that are present in related legislation. I too thank Carers UK for its helpful briefing and support.

The amendment is necessary because there is so much confusion about the term “carers”. It is used to describe paid care workers, who I prefer to describe as support workers, or perhaps carer support workers, but that is not the same as caring for a family member and caring about a family member, which is a central part of the role.

The amendment is necessary for another reason: the inclusion of parent carers and young carers more systematically, where appropriate, in the Bill’s consultation and involvement provisions. This should drive better practice and outcomes for all concerned as well as providing clarity.

The provisions in the Bill relating to carers to which this amendment refers do not mean that all groups of carers defined here must be consulted or involved for all services, but only where appropriate. It does, however, provide clarity. The Health and Social Care Act 2012, on which the legislation builds, did not define carers either, which in hindsight it probably should have. This is therefore an opportunity to refine the legislation based on this experience.

Carers UK’s view is that this amendment would improve the clarity and delivery of policy and practice. Family and friends who provide care often put their needs at the back of the queue, and yet the NHS would collapse without them. As already set out, young carers face particular health inequalities and challenges in caring. Evidence from the Children’s Society shows that one in three young carers has a mental health issue and 80% of young carers felt more isolated during the pandemic.

The amendment has the broad support of a variety of different organisations that deliver services and support to carers, and which would welcome this clarity. As well as Carers UK, this includes the Patients Association, MS Society and many local carers’ organisations. As they are the organisations which will be implementing the legislation, supporting and informing carers and providing clarity is essential.

When this issue was raised in Committee in the House of Commons, the Minister said that “carer” should be defined in its everyday sense as unpaid carer. However, we already have sound legislation, which can be referred to, that defines carers. We need to ensure that the muddle of terms created during the pandemic is undone. I ask the Minister to define carers clearly in the Bill by accepting this amendment and to recognise the hugely invaluable role that carers play in our society.

[Lord Young of Cookham (Con)]

My Lords, it is a pleasure to follow my new room-mate, the noble Baroness, Lady Hollins, and I agree with every word that she has just said. I also agree with the other speeches that we have heard in favour of the various amendments. I pay particular tribute to the noble Baroness, Lady Pitkeathley, for her tireless campaign over 40 years on behalf of carers.

I have added my name to Amendment 219 but I will focus on my Amendment 269, which focuses on young carers. I am grateful to the three noble Baronesses who have added their names. Might I be allowed a word on one line in Clause 80, whose future I thought we were debating in this group but which has now been incorporated into the Bill? The line is:

“The Community Care (Delayed Discharges etc) Act 2003 is repealed”.


Noble Lords with long memories may remember that Bill. At the time, I said it was the worst I had seen in 30 years. Instead of doing what this Bill seeks to do —to bring together health and social care to facilitate closer co-operation—it established an antagonistic relationship between the NHS on the one hand and social services on the other by enabling one part of the public sector unilaterally to fine another part. It was a friendless piece of legislation, heavily criticised in your Lordships’ House, as the noble Lord, Lord Hunt of Kings Heath, who had the misfortune to pilot it through, will doubtless confirm.

At the end, my noble friend Lord Howe said, nearly 20 years ago:

“On a more philosophical level, we need to ask ourselves whether this system of financially driven imperatives is what we want to see pervading the fabric of our public services wherever the NHS and social services interact. I am clear that it should not”.—[Official Report, 17/2/03; col. 929.]


How appropriate that, 20 years later, my noble friend helps to put the final nail in the coffin of that Bill. However, it had one redeeming feature: the obligation to assess prior to discharging a patient from hospital. However, as drafted, as other noble Lords have said, the proposals could have the unintended consequence of weakening protections for children who look after adult relatives.

My amendment is about young carers and is shaped by my experience when in another place of working with Andover Young Carers. Children barely in their teens were combining education with caring for disabled parents. The organisation was based in a small bungalow on a local authority estate, and it did heroic work, forging closer links with schools and children’s services. Some of the children spent more than 30 hours each week looking after parents and elderly relatives—almost the equivalent of a full-time job—as well as often having caring responsibilities for younger siblings. They cooked, did the housework, shopped, collected prescriptions, leaving little or no time to enjoy their childhood. The noble Lord, Lord Howarth of Newport, spoke movingly about the work of young carers in Kingston.

According to research from 2018, as the noble Baroness, Lady Wheeler, told us, there are more than 800,000 young carers in the UK. Recent figures show that 180,000 children in England who care for an ill or disabled relative are missing out on support, simply because they are not known to their local authority. Hence the need for this amendment which ensures that young carers are identified before adults are sent home from hospital to be looked after by them. If contact with adult carers is necessary, as we have heard, it is doubly necessary for young carers.

This is because we have clear evidence from Barnardo’s—I am grateful for its briefing—which shows that adults are being discharged from hospital into the care of children, without first making sure that these children are aware of their new responsibilities and that they have the support necessary to enable them to discharge them. I fear this is set to only get worse, placing more caring responsibilities on small shoulders, unless the Bill as currently drafted is amended.

The Care Act 2014 gave a young carer under the age of 18 the right to a needs assessment and placed a duty on local authorities to take reasonable steps to identify young carers in their area who may need support. Yet, in its report Still Hidden, Still Ignored, Barnardo’s found that young carers were still slipping through the net. Its finding is reinforced by the latest CQC survey, which found that 21% of people did not have their family or home situation taken into account when staff prepared them for discharge, a point referred to in the excellent paper which many noble Lords received today from Dr Moore at the University of Manchester.

This amendment places an obligation on the NHS to ascertain whether a patient will be cared for primarily by a young carer and, if so, to contact the local authority concerned for an assessment and the necessary support. This will not delay discharge but would ensure that hospital staff ask if a child under 18 will be the primary carer. If the answer is yes, the hospital should contact the relevant local authority which will ensure that a needs assessment is carried out.

I know the Government have made positive steps to ensure that the needs of young carers are recognised in the guidance which will accompany this Bill, and for that I am grateful. However, without a clear duty on hospitals to establish whether a patient is being discharged into the care of a child, the current situation is likely to continue. Guidance is worthy, but sadly not definitive. Therefore, the pathway for young carers to get the local authority assessment they are entitled to needs to be strengthened and here the health service is the key missing link. I speak to this amendment today because young people who care carry huge responsibilities and we must, as a society, do more to ensure they can live the flourishing lives they deserve.

Health and Care Bill

Baroness Hollins Excerpts

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

[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.

[Lord Moylan (Con)]

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.

Health and Care Bill

Baroness Hollins Excerpts

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

[Baroness Hollins (CB)]

My Lords, I welcome all the amendments in this group. The importance of parity between mental and physical health is key, and I am grateful to the Minister for confirming that that is the intention behind the Government’s amendments. The explanatory component of the amendment is important, but a question remains over what precisely constitutes mental health spending. I would be grateful if the noble Lord could clarify this. For example, will the report on the expected change and expenditure by NHS England and the ICBs, and the comparison with the previous year, include other aspects of mental health investment not covered by the mental health investment standard, including dementia and learning disabilities? Will the Minister consider identifying in the report whether each ICB has increased the proportion of spending on children and young persons’ mental health, with details of any failure to increase spend?

Turning to Amendment 184, tabled by the noble Baroness, Lady Tyler, to which I also added my name, Dr Adrian James, president of the Royal College of Psychiatrists, said:

“These new standards will help patients get the treatment they need when they need it by setting more rigorous standards and generating vital data, helping to put mental health on a more equal footing with physical health. The standards will only have this impact if matched with similarly ambitious investment and action on the workforce crisis to ensure that no-one has to wait too long for the treatment they need. It’s vital the government provides further clarity on how it will support the implementation of these standards as part of the broader recovery from COVID-19.”


I would add that the range of treatments available in all localities needs to be thought about very carefully by ICBs, just as in surgical teams the right specialist expertise is required for each condition, with reasonable adjustments being made for people who have difficulties in accessing specialist services. I include here, of course, people with learning disabilities. It would be unfortunate if waiting times simply led to an increase in medication clinics, rather than the development of a gold standard treatment in mental health, which would include appropriate skills and psychotherapeutic help alongside appropriate social prescribing.

[Lord Davies of Brixton (Lab)]

I want to reiterate a couple of points on this issue that I made at earlier stages of the Bill. I welcome all these amendments, and I am glad about the movement from the Government and that they have recognised the issues raised. Obviously, the key issue here is funding, and a move to better funding for mental health services within the health service is clearly important. It is also important that mental health is referred to in the legislation, and good that the standards have some statutory backing.

I have to express one concern: waiting times and access are important in and of themselves, but they are not a direct reflection of the standard of care. We need to do more work to understand how we can measure the standard of care being delivered by our mental health services. I have mentioned the issue of the differential mortality. I am sure that there are other issues, but mortality is something that I know a little bit about; those other issues could be brought in so that we directly assess the output as well as the input.

These amendments are important and will address the way in which mental health services suffer because of a lack of esteem. However, they are only treating the symptoms of this lack of esteem. We need to understand a lot more about why mental health, in all sorts of subjective ways, has not achieved a parity of esteem within medical culture as a whole. It is a deep-seated problem which needs to be addressed. The money and standards are important, but we need to understand a lot more about this differential level of esteem and how it can be addressed at its heart—not just by addressing the symptoms.

--- Later in debate ---

[Baroness Meacher (CB)]

My Lords, I support Amendments 9, 10, 14 and 32 and will speak to my Amendment 11, which follows on quite nicely from the contribution of the noble Lord, Lord Bradley. It refers to mental health, public health and secondary care services as vital to be represented on ICBs.

As drafted, the Bill leaves the membership of ICBs very much up to local decision-making. The Minister’s Amendment 31 does not change that; it leaves it up to the ICB to decide what it should look like. My concern is that ICBs may be dominated by managers from a range of organisations, perhaps including private sector health bodies. If such ICBs are established—they are being created as we speak—the Minister’s amendment simply enables them to reproduce themselves over time. There will be a degree of transparency over time, but the amendment ignores key sectors and the need for significant clinical inputs to these boards.

Amendment 31 usefully provides an opportunity for statutory guidance to achieve important objectives. In his letter, the Minister made it clear that statutory guidance will clarify that the ICB’s annual report will cover ICB duties in relation to child safeguarding. I very strongly welcome that. Can he include mental health and public health alongside child safeguarding as very particular services that are too often neglected and really need to be represented on ICBs? If he can agree to include those key services in the statutory guidance, as he has included child safeguarding, I would be very content.

Why are these services so important? As I said in Committee, having chaired a mental health trust for nine years, I am acutely conscious of the importance of high-quality and available child mental health services in particular. Across the country at present, the scarcity of such services means that vast numbers of children with quite severe mental health problems simply never get a psychiatric service at all while they are children. These untreated children will have severe problems for the rest of their lives because of that lack of treatment. It is therefore crucial to have a psychiatrist, who will be very conscious of this, on these ICBs—any psychiatrist will be aware that you have to intervene early if children display mental health problems. That is why I feel so strongly about that; I have watched it happen over years.

Another highly significant field being neglected as ICBs are being formed is public health. As many noble Lords know, I am conscious of the huge impact that effective public health responses could have on drug addiction. Police services are increasingly aware of this and are diverting addicted young people to treatment and away from the criminal justice system. However, this approach assumes that treatment services are available in every urban area, but they are not—they have been dropped or cut. Having a public health consultant on every ICB is crucial if these difficult matters are to be properly dealt with and treatment centres are not just closed because they are inconvenient, or whatever the case may be.

The Government hope to control the growth in knife crime through punitive, serious violence reduction orders. We know from all the research in the field that they simply will not work. The Durham, West Midlands and other police services are way ahead of the game, and more and more police services are following them in showing how best to ensure that violent young people caught up in county lines gangs can be diverted into education and work and away from the criminal justice system. However, that assumes that there are treatment facilities available; otherwise it simply cannot happen. Again, please can the Minister include a public health professional consultant on the ICBs as a recommendation in the statutory guidance, as he has done for child safeguarding. I beg to move.

[Baroness Hollins (CB)]

My Lords, I will speak to Amendments 14 and 32 in my name and that of my noble friend Lady Watkins. I want to give an example from my experience; I declare an interest here as independent chair of an oversight panel, reviewing for the Department of Health and Social Care the use of long-term segregation for children and adults with learning disability and/or autism detained under the Mental Health Act. I have seen the impact of very poor and unaccountable commissioning for this group, with very costly mistakes—costly in money and in terms of lives lost and lives destroyed—because of a failure of commissioning appropriate health and social care in the community.

Some commissioners, frankly, do not have the competencies to do their commissioning job safely. I make this point because—while I appreciate the value of Amendment 31 and its requirement that ICBs would have skills, knowledge and experience, keep them under review and take action if they consider that members are failing in some way—as the noble Lord, Lord Bradley, put it, it is rather looking backwards, or marking their own homework, as I might put it, when they do not know what they do not know. This is the problem and why these amendments propose going a little further.

I welcome the Minister’s statement that ICBs will be required or expected to have the appropriate skill mix and experience necessary to deliver all their functions. I understand that the Government will issue regulations regarding fit and proper person tests, which will apply to ICBs when established, including adherence to the Nolan principles, Without the inclusion of the specific skills and expertise required, however, there will be little oversight or accountability of commissioning competence.

I would like the Minister to think again, and to commit to regulations and guidance that set out the criteria and standards that members of ICBs must possess, recognising the responsibilities that they will have and the impact of their decisions on the health and well-being of some of the most vulnerable people in our society. Commissioners take decisions of extraordinary influence; they spend large sums of public money. Civil service appointments are made in accordance with a competency framework. There is no reason why commissioners should be exempt from meeting specific eligibility criteria—and not just in the clinical sphere but in the commissioning sphere, for which there is currently no professional competency laid out.

To give another example, later this month I will be sponsoring the Second Reading of the Down Syndrome Bill, the Private Member’s Bill from the other place that will require relevant authorities, including the NHS, to take account of the specific needs of people with Down syndrome. During the Committee stage of the Down Syndrome Bill, the Minister committed to

“having a named lead on integrated care boards who will be responsible for the implementation of the guidance in practice.”—[Official Report, Commons, 2/2/22; col. 642.]

Thus, representation of learning disabilities and autism interests on ICBs would be within the context of the duty of ICBs to ensure that they have the necessary skills, knowledge and experience. Much will depend on the guidance issued by the Secretary of State under that Bill, which would fulfil similar obligations, I hope, to those of the autism strategy and the Autism Act 2009.

I reassure the Minister that I and other noble Lords recognise the challenge that the Government have in seeking to ensure that the new ICBs comprise people with the correct skills to enable the board to carry out its functions, but these amendments ask for a slightly stronger approach. I ask the Minister to assure the Chamber that guidance and regulations will address the requirement for criteria to be specified.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 2 & Report stage
Tuesday 1st March 2022 Lords Chamber

Moved by

[Baroness Hollins]

18: Schedule 3, page 159, line 16, at end insert—
“116C Primary ophthalmic services for people with learning disabilitiesNHS England must make arrangements for the assessment of the need for primary ophthalmic services by people with learning disabilities, including access to sight tests, and ensure primary ophthalmic services are commissioned to meet those needs, including in special schools.”Member’s explanatory statement
Under Schedule 3 of the Bill, NHS England retains its powers to make arrangements for the provision of primary ophthalmic services itself or direct Integrated Care Boards for such provision. This amendment seeks to improve eye care for people with learning disabilities including in special schools.

[Baroness Hollins (CB)]

My Lords, I rise to speak to this amendment on behalf of my noble friend Lord Low, who is unable to move it because of a failure of his technology. I commend my noble friend’s sustained advocacy of the issues raised by the amendment. I declare my interest as founder and chair of the charity Books Beyond Words, which has published a word-free book called Looking After My Eyes jointly with the charity SeeAbility, which briefed my noble friend and me on this amendment.

The amendment seeks to improve primary ophthalmic services for people with learning disabilities, including pupils in special schools. There is no system of national monitoring of the number of people with learning disabilities who have visual impairments. Some research has estimated that people with learning disabilities are 10 times more likely to have serious eye problems than the general population, and six in 10 people with learning disabilities need glasses but may not recognise that they have sight problems. They may not be able to communicate this effectively, and they certainly need reasonable adjustments to access ophthalmic services.

The prevalence of visual impairment increases with the severity of someone’s learning disability. We know that some conditions associated with a learning disability, such as Down’s Syndrome, are associated with specific causes of visual impairment such as cataracts. My noble friend commented in Committee that the charity SeeAbility had identified that “four in 10 children” in special schools

“had never had a sight test”

and that

“half of adults with learning disabilities had not had a sight test” —[Official Report, 20/1/22; col.1837.]

within the recommended period. In short, those most in need of high-quality eyecare are arguably those least likely to get it. We need targeted improvements in primary eyecare for all people with learning disabilities. I am therefore very pleased to support my noble friend’s amendment and, in his absence, I beg to move.

[Baroness Thornton (Lab)]

I just want to say that I think that that is perfectly correct and reasonable.

--- Later in debate ---

[Baroness Penn (Con)]

My Lords, I am very grateful to the noble Baroness, Lady Hollins, for introducing this debate on behalf of the noble Lord, Lord Low. I am the first to agree that the provision of primary ophthalmic services for people with learning disabilities is important. This is indeed why the majority of people with more severe learning disabilities are already likely to be eligible for free NHS sight tests.

However, we recognise that more needs to be done in this area to improve access to services. For that reason, the NHS Long Term Plan made a commitment to ensure that children and young people with a learning disability, autism or both in special residential schools have access to eyesight checks. NHS England commenced a proof of concept programme in 2021-22 to further pilot access to sight tests in special schools. Any future national commissioning model will be informed by an evaluation of this pilot, and I ask the noble Baroness to accept that we need to wait for its learning before pushing too far ahead. NHS England will continue to engage providers in the development of any future programme of work beyond the existing proof of concept, and I am sure that the Minister for Primary Care and my noble friend Lord Kamall would be happy to meet the noble Baroness and the noble Lord to discuss the programme further.

Finally, I remind the House that the imperative to improve access to these services is part and parcel of the duties placed on ICBs and NHS England to reduce inequalities in accessing health services and inequalities in health outcomes. The work NHS England has undertaken in this space demonstrates how seriously it takes these duties. I hope that, on the basis of the answer I have been able to give and the Government’s commitment to update noble Lords on the future development of this service, the noble Baroness will be content to withdraw this amendment on behalf of her noble friend.

[Baroness Hollins (CB)]

I thank the Minister for her sympathetic response to the amendment. I appreciate the importance of waiting for proof of concept, as was spelled out.

One of the remaining issues, of course, is that training in how to adapt services for people with learning disabilities is also important. However, I hope that the proposed mandatory training in learning disability and autism will help to address that further. On that basis, I am content to withdraw the amendment.

Amendment 18 withdrawn.

--- Later in debate ---

The Department of Health and Social Care is currently preparing its updated national dementia strategy, which has been much delayed by the pandemic. At its heart, it must have two main focuses, much like local strategies: diagnosis rates and dementia research. On boosting research, it would be remiss of me not to mention the need to deliver urgently on the promise of the 2019 Conservative manifesto to provide a “dementia moonshot”; that is, a doubling of government funding provided to dementia research. If we are to improve the lives of people living with dementia, we need not only determination from local and national government but strategies for how to deliver these ambitions. Whether it is delivered through this amendment or through other means such as the strategy, dementia care should get the co-ordinated planning that it deserves.

[Baroness Hollins (CB)]

My Lords, it is a pleasure to add my name to the amendment tabled by the noble Lord, Lord McColl. I am not going to say very much in support, because the background has already been explained. Without a diagnosis, people living with dementia cannot access the community support they need.

I will add one specific group who experience dementia, which is people with Down’s syndrome. Some 60% of people with Down’s syndrome will develop Alzheimer’s by the age of 60. A lot of research on Alzheimer’s has been developed from an understanding of Down’s syndrome and the changes that take place in people’s brains. The manifesto pledged to double the funding for dementia research. The amount is interesting. It was a commitment of £800 million over 10 years for dementia research. To put that figure into context, the co-chair of the APPG on dementia, Debbie Abrahams, has stated that dementia currently costs our economy £34.7 billion each year. I therefore support this amendment requiring integrated care partnerships to include a strategy to improve both the diagnosis of dementia and dementia research, which has the potential to improve the lives of so many people in the UK.

I also added my name to the amendment in the name of my noble friend Lady Finlay. I, too, began my medical career as a GP. I therefore support my noble friend Lord Crisp’s amendments. It also has some relevance to my later practice in psychiatry. Having worked as a general practitioner in south London, I began to understand the importance of social factors in the development of mental illness and in the ability of my patients to live with whatever long-term condition they might have. As a community psychiatrist I have extensive experience of practicing medicine that addresses people’s biological, psychological and social needs, and I have been a prominent advocate of the least restrictive practices. Best practice includes facilitating robust, multidisciplinary mental health care in the community where it is a feasible alternative to treatment in hospital and, when admission is needed, helping people to be discharged back into the community at the earliest point so that their recovery can continue in the community, close to family and friends. As a mother, I advocated for effective community rehabilitation for my daughter after she become quadriplegic, which was a much better option than the nursing home care that she was initially offered.

Robust integration between multiple disciplines within health and social care is essential to ensure the high-quality, coherent, consistent and readily accessible community rehabilitation that can promote physical and mental health and help people to thrive to their full potential within communities. I am very pleased to support my noble friend’s amendment. I should declare an interest as president of the Royal College of Occupational Therapists, a profession which has a particular contribution to make in community rehabilitation.

[Baroness Hodgson of Abinger (Con)]

My Lords, before I speak to my amendment I would like to put on record that I particularly support my noble friend Lord McColl’s Amendment 62, which considers the needs of those with dementia. I also support the thrust of the amendment tabled by the noble Baroness, Lady Finlay, on better rehabilitation. Perhaps the concept of convalescence, as it used to be called, would help free acute beds and thus save money. I also support the amendments tabled by the noble Lord, Lord Crisp, to ensure that integrated care boards work with primary care and, I hope, with community nursing as well.

Amendment 177 is in my name. Much of the Bill is about the architecture of the NHS, and it is important that we get it right. However, the success of the Bill will be whether it delivers for patients. As we have discussed before, healthcare needs to be patient focused. At the moment we sadly have a system where the traditional idea of a family doctor who knows their patients is too often disappearing. Why has this been allowed to happen when we know it worked so well? We need somehow to get an element of that back. I understand that today many doctors in general practice find their role far less satisfactory, with fewer people wanting to go into general practice. I am given to understand that a large element of this has to do with the fact that fewer doctors know their patients, whereas in years gone by they would know and look after the whole family and be part of the community.

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. This amendment would introduce a new clause that lowers from 75 to 65 the age at which every patient is assigned a named GP, which would help with prevention, an issue raised by my noble friend Lord Farmer in his amendment. The amendment would also ensure that named GPs actually have to meet and have some knowledge of each patient they are responsible for, and to communicate directly with them and their family.

I will not reiterate all the facts and figures I gave in Committee. I merely remind your Lordships that studies have shown that, quite simply, being treated by a doctor who really knows you can be life-saving. Quality care by a named GP benefits patients by delivering continuity of care and therefore better healthcare, and by keeping more people out of hospital, relieving some of the burden on the NHS.

Following the debate in Committee, I have added proposed subsection (2) to enable the role of the named GP to be “delegated” to another doctor in the practice who might be chosen and preferred by the patient. But this amendment ensures that patients will have someone who actually has some knowledge of them and whom they or their relatives can turn to for help, care and advice.

I was very disappointed that, in Committee, my noble friend the Minister failed to grasp the significant difference between current regulations, guidance and what happens in practice. I have personal proof that, as things stand, some named GPs are able to choose not to know the patients they are responsible for. This amendment seeks to positively address that.

I urge the Minister to reconsider and accept these proposed changes to the Bill. I absolutely agree with the noble Lord, Lord Hunt, that primary healthcare is incredibly important. This whole area really needs an in-depth debate because it is breaking down in some places.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 1 & Report stage
Thursday 3rd March 2022 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

My Lords, I thank the House for its continued focus on addressing the needs of babies, children and young people and thank noble Lords for bringing forward amendments on this issue again today. I am also really grateful to noble Lords who have engaged with the me and my officials, and I hope that this has resulted in amendments that your Lordships’ House feels that it can support.

I start with Amendment 36, in my name. This amendment will require an integrated care board to set out any steps that it proposes to take to address the particular needs of children and young people under the age of 25 in the forward plan. In addition, the Government have committed to produce a package of bespoke guidance, which explains how the ICB and the ICP should meet the needs of babies, children, young people and families. This guidance will contain provisions for the integrated care partnership’s integrated care strategy to consider child health and well-being outcomes and the integration of children’s services, as well as providing that the integrated care partnership should consult local children’s leadership and children, young people and families themselves, on the strategy.

NHS England has also agreed that it will issue statutory guidance, expecting that one of the ICB executive leads will act as a children’s lead, with responsibility for championing the needs of babies, children and young people. I hope that noble Lords are supportive of this government amendment and its underpinning commitment to support, improve and enhance services for babies, children and young people.

I turn to Amendments 157, 185 and 186. Safeguarding children is a priority for the Government, and we share the horror and concern provoked by the awful murders of Arthur Labinjo-Hughes and Star Hobson. The Government are committed to addressing barriers to safe, timely and appropriate sharing of information to safeguard children, and we have heard clearly the strength of feeling across the House on the value of a consistent identifier for children. In particular, I pay tribute to the noble Baroness, Lady Tyler of Enfield, and other noble Lords, for pushing us on this issue.

To this end, we are committing in this legislation to publish a report, within one year of the section coming into force, that will describe the Government’s policy on information sharing in relation to children’s health and social care and the safeguarding of children and will include an explanation of the Government’s policy on a consistent identifier for children. It will also include the Government’s approach and actions to implement the policy set out in the report. The Government agree with noble Lords that action is needed. The report will reflect a cross-government position on what actions will be taken to improve safe and appropriate information sharing.

This amendment, of necessity, is limited by reference to health and social care, reflecting the scope of the Bill. However, the report to which this amendment refers will be laid by the Secretary of State for Education, who intends that it will cover improved information sharing between all safeguarding partners, including the NHS, local authorities and the police, as well as education settings. The Department for Education has already started its work, which will look at the feasibility of a common child identifier. I hope these amendments will reassure noble Lords that the Government are committed to safeguarding children and improving services for babies, children and young people. I beg to move.

[Baroness Hollins (CB)]

My Lords, I am grateful to the Royal College of Speech and Language Therapists, the National Children’s Bureau, the Disabled Children’s Partnership and the Royal College of Paediatrics and Child Health for their support with this amendment and for their constructive engagement with the Department of Health and Social Care. I also thank the noble Baroness, Lady Tyler, for adding her name to this amendment.

I welcome the amendments that the Minister has laid relating to the needs of babies, children and young people but, despite the good progress made, this amendment seeks to go further by requiring NHS England to conduct a performance assessment of each ICB in meeting the needs of babies, children and young people in each financial year. This includes its duties concerning the improvement in quality of services and reducing inequalities and the extent of its public involvement and consultation.

There are significant challenges in meeting the health and care needs of children and young people, including their mental health needs, which are different and arguably more complex than for adults. This is particularly the case for disabled children and young people and those with special educational needs. A recent survey by the Disabled Children’s Partnership and the parent campaign group, Let Us Learn Too, found that 40% of families with disabled children have seen their savings wiped out by fighting and paying for support.

I shall give one brief example from the West Midlands. Joanne, whose autistic son also has pathological demand avoidance and communication difficulties, explained that the local authority refused to do an occupational therapy assessment, so she paid for one privately. Eventually, she took the local authority to tribunal at considerable expense in legal fees. Despite winning, it is one year on and still no support is being provided by the local authority.

One in three families with disabled children said they needed publicly unprovided essential therapies for their disabled child, but could not afford them. Some 60% of families with disabled children have sought NHS mental health support for a family member due to the stress of fighting for basic services. The Disabled Children’s Partnership cites individuals feeling a sense of societal resentment toward disabled people, says that carers are persistently undervalued and underrepresented in policy and details the enormous physical, emotional and financial burden they endure in caring for their disabled family member without adequate support from the health and care sectors. Joanne said, furthermore, that the local authority blamed her for her son’s disability and put a child protection plan in place rather than supporting her, although thankfully it was removed shortly afterwards.

Integrated care boards have a crucial role in commissioning primary and community healthcare services directly for babies, children and young people. They will play a key role in the joint commissioning of services for disabled children and those with special educational needs, as well as contributing to education, health and care plans and in the commissioning of joined-up services in the first 1,000 days of life, in which the Government are, importantly, investing. Crucially, ICBs will be jointly responsible for the leadership of local child safeguarding partnerships, together with the police and local authorities.

Yet support for children and young people varies geographically. Local systems find themselves pulled in different directions by different government initiatives and separate pots of funding, which creates a profound risk of destabilising what are relatively new local safeguarding partnerships. The Wood report, published in May 2021, reviewed the new multi-agency safeguarding arrangements put in place by the Children and Social Work Act 2017. It revealed just how stretched the resources are in protecting children, as well as the need for a more effective culture of joined-up working and a more consistent and detailed understanding of the role of the three statutory safeguarding partners—the local authority, the CCG and the chief officer of police. The Wood report also emphasised the importance of accountability regarding the quality of these services and the need for inspectorates and regulators to develop a model to analyse performance against what is deemed to be best practice, something that this amendment goes a long way to trying to achieve.

Health and Care Bill

Baroness Hollins Excerpts

Lords Hansard - Part 1 & Report stage
Monday 7th March 2022 Lords Chamber

[Baroness Meacher (CB)]

My Lords, I rise to support Amendment 113. I applaud the noble Baroness, Lady Pitkeathley, both on this amendment and on the years and years of commitment she has given to the support of carers.

It is extraordinary what this Government are prepared to do in this Bill. In revoking the Community Care (Delayed Discharges etc.) Act 2003, they are abolishing the “safe to discharge” test, which requires processes to have been followed to ensure that appropriate and adequate care is, or will be, in place for a patient’s discharge from hospital. The Government are proposing that carers’ rights in primary legislation should be put in statutory guidance instead.

As a member of the Delegated Powers and Regulatory Reform Committee, I am very conscious that, under this Government, secondary or delegated legislation is used more and more to concentrate power in the hands of Ministers rather than in Parliament. The only possible reason for the Government to remove carers’ rights from the Bill, and to put them into secondary legislation, is to weaken those rights. Can the Minister give any reassurance on that point? It is a very important question.

A number of us recently met with a group of so-called adult carers—teenagers and adults—and also with a group of young carers. Both of those experiences were humbling from my point of view. I will mention a couple of points that came up. One teenager rather casually mentioned that she had begun being a carer at the age of three. This is unbelievable, is it not? I forgot to ask her what she actually had to do at the age of three; it is difficult to imagine. But, whatever she had to do, the idea that she somehow had a sense of responsibility at that age is truly alarming.

The other memorable moment was when a teenager was asked, “What is the most difficult thing for you, or the biggest problem that you have as a carer?” I thought she would say that she did not have any time to play with her friends or that she had to do all sorts of boring and horrible jobs that her friends do not. But no, she did not say any of that; what she actually said was, “The biggest problem I have is that the hospital staff won’t tell me how much medication my mum needs. They say they’ve got to talk to my mum, but that’s impossible.” The selflessness implied in that is just completely extraordinary—and of course there were lots of other incredible points.

If these young carers are not consulted before their dependent relative is discharged from hospital, they may be at school or in the middle of a hockey match—it is just unimaginable that this requirement should be in any way weakened. I ask the Minister to take extreme care on this issue when going back and considering the Bill; only then can we be sure that patients are not just medically fit to be discharged from hospital, as the noble Baroness, Lady Pitkeathley, said, but are safe to be discharged—that is, carers or others are there to look after them.

BASW rightly points out that revoking a local authority’s Care Act duty to integrate care and support provision with health provision at the time of the key decision about where a person should be discharged to from hospital undermines the model of integration between social and health care staff—surely the absolute opposite of the whole objective of the Bill. I understand that discharge to assess is probably reasonable for medium and long-term care planning. However, an assess to discharge approach is even more important and should be done in hospital, from the date of admission to hospital. Where is that commitment in the Bill? I look forward to the Minister’s response.

[Baroness Hollins (CB)]

My Lords, I am very pleased to support the noble Baroness’s amendment, and my thanks go to Carers UK for its briefing. I declare an interest as a family parent carer of an adult disabled man.

Earlier in Report, community rehabilitation was debated, and Amendment 113 complements this by acknowledging the vital role that carers play in supporting people’s discharge from hospital and promoting a community-based model of care. In Committee, I promoted an amendment that sought to define carers within the Bill, as they are mentioned in three clauses. This amendment incorporates that approach, to ensure that parent and young carers are not overlooked. I cannot stress sufficiently strongly how important rights in primary legislation are for carers, who often have all the responsibility for caring but very few of the rights. They are often experts in how people like to be treated, and they can be experts in a condition that professionals may have little detailed knowledge of.

Carers UK heard from carers directly about their experiences of being shut out of the system as part of the discharge to assess process. For new carers, it was often described as bewildering; promises to contact them just did not materialise. Carers UK research found that carers were not consulted and were not given information and advice or the support that they needed to care safely and well for the person who had been discharged. For several of these people, this involved admission to longer-term intensive support or, sadly, readmission back into hospital again. The amendment would have provided the checks and balances needed to ensure that this did not happen.

Carer experience surveys are also important, and they found that carers’ experiences of accessing health and care services for themselves have either plateaued or deteriorated in the recent past. Carers are twice as likely to have ill health as a result of caring; too often, they are overlooked in policy and practice in relation to health services. This is particularly true for parents of disabled children and for young carers. The work that they do has invaluable medical and economic benefit, often at the expense of their own well-being. I therefore urge the Minister to accept the amendment.

Health and Care Bill

Baroness Hollins Excerpts

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

[Baroness Hollins (CB)]

My Lords, I do not understand why it is a conscience vote if it is not about the substance or the subject but somehow about parliamentary process. That does not seem to me to be a matter of conscience.

The point is that people want better care at the end of their life. The amendment to this Bill from the noble Baroness, Lady Finlay, is a game-changer. I wonder how many noble Lords understand that something has changed during the passage of this Bill. For the very first time, people will now be eligible and able to have palliative and hospice care at the end of their lives commissioned by the NHS. It is the responsibility of all integrated care boards to commission proper, good palliative care so that the poor care and poor deaths that people in this House are afraid of will be a thing of the past.

This is the wrong time to talk about introducing lethal drugs as a last resort. We should be looking forward with optimism and hope about how things have changed. This is also relevant to my noble friend Lady Meacher’s Bill. Noble Lords have questioned the motives of Peers who have tried to amend that Bill. It needed to be amended and scrutinised. My amendments were all about palliative care—this was before the game-changer of universal palliative care—being available before people are offered the only option of lethal drugs. If lethal drugs are the answer, why was this not an amendment to introduce lethal drugs to enable people to be assisted in their own suicide? Palliative care will reduce the supposed demand for physician-assisted suicide.

I think the statistics have been misrepresented. Only 10 US states have legalised physician-assisted suicide, despite the supposed success in Oregon. Maybe they have recognised that palliative care decreases rather than increases when lethal drugs are available. Some 200 attempts to introduce physician-assisted suicide in the United States have been defeated.

[Lord Sentamu (CB)]

My Lords, I do not want to detain the House long. The noble Lord, Lord Forsyth, told us that this is not to open the debate in favour of or against assisted dying but, as the debate has gone on, there has been an opening up of that debate. We have to look very carefully at what was given to us by the noble and learned Baroness, Lady Butler-Sloss, on the constitutional question. This amendment is not saying that the Government must find time to debate this matter but instructing the Secretary of State.

This is a revising Chamber. It is made up of unelected people telling the Government in the elected place that they must produce a Bill and it must be given time. That is my worry. My views on assisted dying are very clear. I will debate it whenever the issue comes back again, but the issue for me now is to avoid what was happening towards the end of Theresa May’s Government, when the Back-Benchers were trying to take control of government business. That led us into a mess.

I am not against speaking in favour of any Government of any colour, because I have never been a member of any party, but I want to observe how the liberalisation of homosexuality actually happened. Michael Ramsey, as Archbishop of Canterbury, began a debate in your Lordships’ House because of what had happened to Turing and many other people. He just thought: is it natural justice that consenting adults should actually be prosecuted and have to go through horrendous treatment, some of them facing horrendous stuff? The debate happened here and what was the result? It was the Wolfenden report. That recommended that this should be debated and a Minister of the Government, and Mr Jenkins on behalf of the Labour Party, joined in the debate and what happened? The law was passed. Where did it start? It started in the elected Chamber.

I have a real concern that we, as a revising Chamber, are not even considering a Bill that has actually come from the Government but instructing the Secretary of State to produce a Bill within a year of this coming into being and saying that it must be debated. Does this respect our position and why we are here? This is not revising legislation, at which all your Lordships do a fantastic job. Without your Lordships, the Bills in this country would be horrendous. However, let us not overreach ourselves and think that we can instruct the Secretary of State to bring this in. Who is the Secretary of State in this case? is it the Secretary of State for Health and Social Care?

May I please ask that we get another amendment or another Statement to give the House a Private Member’s Bill that needs to be given sufficient time to be debated properly? Also, other people told your Lordships that on 21 September 2015, there was full a debate in the other place.

Health and Care Bill

Baroness Hollins Excerpts

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

Moved by

[Baroness Hollins]

176: After Clause 164, insert the following new Clause—
“Mandatory training on learning disability and autism
(1) In regulation 18(2) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (S.I. 2014/2936), for sub-paragraph (a) substitute—“(a) receive—(i) such appropriate support, training, professional development, supervision and appraisal as is necessary to enable them to carry out the duties they are employed to perform, and(ii) in particular, training on learning disability and autism, appropriate to their role, as set out in the code of practice issued by the Secretary of State under section (Mandatory training on learning disability and autism) of the Health and Care Act 2022,”.(2) With regard to training on learning disability and autism, the Secretary of State must prepare and publish a code of practice (“the code”) containing guidance addressing—(a) the content of mandatory training and its co-production,(b) the appropriate levels of training required across staff roles,(c) the co-delivery of training,(d) the in-person delivery of training,(e) the accreditation of training,(f) the procurement of training,(g) the monitoring and evaluation of the impact of training, and(h) the implementation of mandating of training across regulated health and social care providers.(3) The Secretary of State must seek the participation of and consult such persons and bodies as they consider appropriate—(a) in preparing the code, and(b) in revising it.(4) The Secretary of State may not issue the code or any revision unless a draft has been laid before and approved by a resolution of each House of Parliament.(5) The Secretary of State must review the code every three years and lay the findings before Parliament.(6) In this section—“appropriate to their role” has the meaning given by the code;“autism” means a spectrum of disorders which start in childhood, the clinical manifestations of which include atypical social communication and social interaction and restricted, repetitive patterns of behaviour;“in person” means training delivered live, by people, in the presence of the trainee;“learning disability” means a disability which includes a significantly reduced ability to understand new or complex information or to learn new skills, with a reduced ability to cope independently, which started before adulthood, with a lasting effect on development.”

[Baroness Hollins (CB)]

My Lords, Amendment 176 proposes that guidance should be published on how training in learning disability and autism will become mandatory for all health and social care staff. The amendment has been altered from earlier stages to address concerns raised by the Minister and officials, both in Committee and in discussions following Committee. I am grateful to the Bill team, Department of Health and Social Care officials, Mencap and noble Lords who are supporting this amendment.

The unacceptable health inequalities that many people with learning disabilities and autism face, which have been worse during the pandemic, have been reported numerous times and I am not going to repeat them here. Nor will I repeat the circumstances of Oliver McGowan’s tragic death. His parents have been powerful advocates of mandatory training and persuaded Her Majesty’s Government to commit to introducing it. Her Majesty’s Government conducted a consultation and launched an ambitious pilot of the Oliver McGowan mandatory training scheme and the evaluation is due any day.

This amendment goes a step further because it would put in statute a policy that the Government have committed to undertake. It would create a code of practice that would consult on and set out how training will be scaled up across the country. The code provides a number of advantages compared to simply amending the Health and Social Care Act 2008. It intends that co-production and co-delivery are embedded from the start and this is achieved through a requirement for the Secretary of State to consult relevant persons in preparing the code and regularly revising it in the light of outcomes. These relevant persons must include those with lived experience.

Co-production and co-delivery should be uncontroversial, but campaigners are still having to fight for this. One of the concerns put to me is whether in fact there are enough experts by experience to contribute to training that would be provided to all health and care professionals. This morning, I told my son, who has a learning disability, about tonight’s debate. He said that he wanted other people to have the same opportunity that he has had to be able to train the staff in his GP practice, but training for trainers would, of course, be needed. So many people with learning disabilities and so many autistic people are keen to have work and yet the work opportunities are not there. Here is a brilliant work opportunity.

The amendment would require the Secretary of State to lay before this House and the other place the findings of a regular review of the code, which will be needed to ensure accountability and scrutiny and help to shape any revisions or changes required in the light of improvements or otherwise of the health and care outcomes for this group of people. Accepting the amendment would be a wonderful signal to campaigners, including Oliver’s parents, Paula and Tom McGowan, that the Government’s promises will be honoured sooner rather than later. I urge the Minister to accept the amendment.

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[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.

Amendment 176 agreed.