King’s Speech

Baroness Hollins Excerpts

Thursday 9th November 2023 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I will focus my response to the gracious Speech on mental health, learning disability and autism. I remind the House that I have autistic family members and have had a long career as a psychiatrist.

The recent Royal College of Psychiatrists report Infant and Early Childhood Mental Health: The Case for Action urgently draws to our attention that children under five in the United Kingdom are at risk of suffering from lifelong mental health conditions that could be prevented with the right support and that 50% of mental health conditions arise before the age of 14. Prevention and early intervention are essential, and the truth is that every family in the land is affected in one way or another.

For people of all ages who develop mental illness, the right health and social care must be provided within the right legislative framework. I was a member of the Joint Committee that reported on the urgently needed Draft Mental Health Bill in January. A government response is still awaited. The absence of a mental health Bill will affect so many families.

Last year, 50,000 people—I do not apologise for repeating that: 50,000 people—were detained in hospital under mental health legislation, including more than 2,000 people with a learning disability and autistic people, who were often detained without any therapeutic benefit. Years have been spent working on legislative reform, beginning with the 2018 independent review chaired by Professor Sir Simon Wessely, which was commissioned in part because of rising rates of detention under the Act. New legislation is needed to promote the least restrictive practices and to prioritise good mental health care at home. A key element of the draft Bill was to remove learning disability and autism as reason enough to be detained under Section 3. We are no longer a society that sees a learning disability and/or autism as a problem to be treated or fixed, and our legislation must reflect this change.

We need to see more effective progress against the target in the NHS long-term plan to close half of in-patient beds by March next year for people with learning disabilities and autism. Mencap’s analysis suggests that, at the current rate, this target would not be hit until 2028. Although learning disability admissions and discharges are reducing, the detention of people with autism is going up, which may be due to better awareness and recognition of autism.

We must not lose momentum; it is urgent to reform adult social care and the Mental Health Act. The Government’s building the right support action plan made it abundantly clear that reforming the Mental Health Act was key to reducing the number of autistic people and people with learning disabilities being inappropriately detained in psychiatric hospitals. How do the Government now expect to meet the objectives of the action plan, if the mental health Bill has been shelved?

At the request of the Secretary of State, in 2019 I agreed to chair an oversight panel on long-term segregation for people with a learning disability and autistic people. We finished our work in March this year—I say “finished”, but the work is not finished. There are still about 115 people detained in long-term segregation in in-patient mental health care. Yesterday, a Written Ministerial Statement was published about my report, and I am grateful to the Minister for tabling it. My report is entitled My Heart Breaks—Solitary Confinement in Hospital Has No Therapeutic Benefit for People With a Learning Disability and Autistic People. My letter to the Secretary of State for Health and Social Care and Minister Caulfield’s response were published alongside my report.

Our task was to oversee and report on the effectiveness of a Department of Health programme of independently chaired care, education and treatment reviews. The reviews were for people with learning disabilities and/or autistic people who have been detained in long-term segregation under mental health legislation. We found that it was often social care failings and inadequacies in community mental health that led to admissions. Our recommendations are wide ranging. We suggested that long-term segregation should be named “solitary confinement”, hence the use of that term in the title of my report; that it should be notifiable, which requires changes to CQC regulations; that it should become a never event for children and young people; and that it should be severely curtailed for adults, with stringent standards for accommodation and care. This would require changes to the code of practice to the Mental Health Act, but the urgent changes needed are unlikely to be considered until His Majesty’s Government bring forward a new mental health Bill or at least agree to review the code of practice.

Where is this Government’s commitment to improving the nation’s mental health? The omission of a new mental health Bill is particularly poignant in circumstances where legislation is needed to protect some of the people in the most vulnerable circumstances and where it is being repeatedly sidelined. The strapline of the Royal College of Psychiatrists is:

“No health without public mental health”.


I have tabled a Private Member’s Bill—although I have not seen the result of the ballot—to address some of the recommendations in the oversight panel report, in lieu of a mental health Bill in the Government’s programme of work. If I am unsuccessful, I hope that a Member in the other place will be willing to pick it up. We need urgent clarity on the future of social care reform and a commitment to a funded national workforce plan. Workforce pressures, a cost of living crisis, the Covid-19 pandemic and escalating waiting times are increasing the demand for mental health support. There has never been a more urgent time to reform mental health care.

The Minister began his speech today by saying that mental health and parity of esteem with physical health are priorities. This needs to include public mental health as well. I see no sign of that commitment. I hope that the Minister will at least commit to looking at the code of practice for the Mental Health Act so that some urgent changes can be implemented, including some of the recommendations from my report.

Adult Social Care (Adult Social Care Committee Report)

Baroness Hollins Excerpts

Monday 16th October 2023 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I welcome this excellent report from the Adult Social Care Committee. I congratulate the chair and the members; I would have loved to be one. I declare my relevant registered interests: I manage a family member’s direct payment and I am a director of a not-for-profit support organisation. I will not have time to give examples from my professional experience or my experience as a family carer today.

The committee said that social care is often “invisible”, but the report draws attention to what good care looks like, and it deserves to be widely read. Some groups are more overlooked than others. I will focus my remarks on the social care needs of working-age adults with a learning disability. In 2021-22, the King’s Fund found that 69% of social care expenditure for those aged 18 to 64 was on learning disability support. The Health Foundation’s recent analysis calls for a staggering £18.4 billion to meet demand in the next 10 years.

The sheer scale of underfunding that the system faces has a direct impact on the lives of people in need of social care. Cutting an hour here may mean that a person with a learning disability cannot meet their family or friends for lunch. Cutting an hour there may mean that a young person with a learning disability has no choice but to go to bed at eight o’clock on Saturday night. People rely on social care to access ordinary life opportunities, to live the “gloriously ordinary life” envisaged in the report and to become part of their local community—not simply to survive but to live and thrive in meaningful relationships with other people, and to live a life of their choice, as the noble Lord, Lord Bradley, said, rather than one in which a social worker decides how Care Act-assessed needs will be met by a direct payment. Does the Minister agree with me that that is not the spirit of the Care Act?

I want to mention David Towell, whose work with colleagues at the King’s Fund in 1980 kickstarted the ordinary life movement. Their work was a response to successive scandals and inquiries which exposed cruelty and neglect for many of the 50,000 people with learning disabilities then living in long-stay hospitals. They wanted to provide an alternative vision and model of care. Dr Towell’s book, An Ordinary Life in Practice, was published in 1988. In it he said:

“We want to see people with learning disabilities ‘in the mainstream of life, living in ordinary houses and ordinary streets, with the same range of choices as any citizen, and mixing as equals with the other members … of their own community’”.


This philosophy went on to inform many initiatives, including the 2001 Valuing People White Paper and its principles of rights, independence, choice and inclusion. These values were strongly spelled out in the United Nations Convention on the Rights of Persons with Disabilities, which we ratified in 2009.

The report highlights some wonderful initiatives, such as the Wigan Deal and Think Local Act Personal, which genuinely understand coproduction. But the social care system struggles to have the aspiration of an ordinary life any more because of the systemic issues outlined in the report and the urgent need for reform and culture change. This means learning to listen, particularly to the most ignored and marginalised communities, where the path to tackling injustice is that much higher and more difficult. The true state of social care requires pausing to look deeply at the sector and identify what is working and what is not. A key part of that is looking at the issues facing the workforce. Skills for Care estimates that there are more than 150,000 vacancies in the social care sector, and I welcome the committee’s recommendation for

“a comprehensive long-term national workforce and skills plan for adult social care”.

Without this, how could the significant issues of recruitment and retention be solved?

Roles in social care are highly skilled and vocational. Pay rates and training have fallen behind other sectors, but look at how social care has become a valued profession in Germany. We could transform it if we wanted to. In this country, the invisibility of care as a valued profession, compared with similar roles in the NHS, is one significant reason why people cannot stay in the job they love. The Care Act sets out a good legislative framework, but its spirit is not being adhered to. An audit cycle needs to be used effectively in adult social care: implement, review and change. This is the only way to ensure that lasting and meaningful change can take place. Legislation is just the start. I fear that, without political will to tackle these thorny issues, social care will remain invisible and broken. Remember that better lives lead to better health.

Sodium Valproate

Baroness Hollins Excerpts

Monday 5th June 2023 Lords Chamber

[Lord Markham (Con)]

My understanding from speaking to Minister Caulfield on exactly this subject this morning is that she has recently spoken to the Patient Safety Commissioner, who is happy that she has the resource that she now requires to do this part of the study.

[Baroness Hollins (CB)]

My Lords, I note that the damage caused by sodium valproate happens during the first trimester, when many women do not realise they are pregnant for a while, and, despite attempts to plan pregnancy, many pregnancies are unplanned. It is one thing to say that it is the woman’s knowledge, understanding and consent, but what about the long-term care of children who are born with damage caused by sodium valproate? What measures are being taken to attend particularly to the needs of this group?

[Lord Markham (Con)]

The noble Baroness is correct that unfortunately there will always be some cases. Dr Charlie Fairhurst has been advising the Government on how best to create the care pathways so we can make sure that we are catering for the children in this scenario. How it manifests itself, as I am sure the noble Baroness understands, is in things such as increased autism or cystic fibrosis, for which we have existing patient pathways for treatment. We must make sure that these children can get quick and easy access to those treatment pathways.

Draft Mental Health Bill

Baroness Hollins Excerpts

Tuesday 28th June 2022 Lords Chamber

[Lord Kamall (Con)]

When I was having initial discussions on the various parts of the Bill, children and young people’s mental health clearly came up. The statistics are staggering. Some 420,000 children and young people were treated through NHS-commissioned mental health services in 2021. That is an increase of 95,000 in just a few years. That is still without us being aware of everyone who needs access to the system, or young people and their parents and families being aware of what support is available.

We are continuing to increase investment into mental health services by at least £2.3 billion a year by 2023-24, as set out in the NHS Long Term Plan. There is also the extra money in response to the pandemic, which saw extra demand. We have 287 mental health support teams in place in around 4,700 schools and colleges across the country but, once again, more needs to be done. It is one of those issues where demand outstrips supply.

We now have mental health support teams covering 26% of the country a year earlier than planned, but we hope to increase this progressively over the years so that as many schools as possible are covered. We have delivered 7 million well-being for education recovery programmes. We understand the tensions and workforce issues that will inevitably arise. The Health Education England review and the Government’s strategic review are considering all the changes in healthcare overall; all the technologies and ways of delivering services; and the change from secondary to primary and down to the community. We are working out in the response what workforce we need for each of those changes.

[Baroness Hollins (CB)]

My Lords, the average stay for people with learning disabilities and autistic people detained under the Act is five and a half years and, shockingly, many people are criminalised during their admission, making their discharge even more difficult. Although removing learning disability and autism from the Act is clearly the right thing to do, does the Minister agree that, unless there is some improvement in the care and support provided in the community to avoid those admissions in the first place, this could put people at risk? That is a concern in the wider community at the moment. We should take them out, but how do we look after people better?

[Lord Kamall (Con)]

I start by paying tribute to all the work the noble Baroness has done in this area, and for educating me more on this issue when I was a relatively new Minister. All I can say at this stage is that patients who have a co-occurring mental illness as well as a learning disability or autism may well be detained under the Act, but we want to make sure that there is support in the community. This is one of the big debates we have seen on a number of issues—for example, on social care. How much of social care will be in homes and how much will be in the community? Does technology improve that? Does constant online communications technology, sensors and the ability to speak to somebody online almost immediately change that equation? A lot of that will be discussed as we debate the Bill and by the experts who, we hope, will be on the pre-legislative scrutiny committee.

Down Syndrome Bill

Baroness Hollins Excerpts

3rd reading
Friday 1st April 2022 Lords Chamber

Moved by

[Baroness Hollins]

That the Bill do now pass.

[Baroness Hollins (CB)]

My Lords, I beg to move that the Bill do now pass. I thank all those who have worked on the Down Syndrome Bill to get it to this point, including Dr Liam Fox for drafting and steering it through the other place with cross-party support. I note that many of the Members of Parliament who spoke in that debate talked about their own constituents with Down syndrome, which is an explanation of why the Bill had quite so much support. Many members of the National Down Syndrome Policy Group are in the Public Gallery today and I extend a warm welcome to them. I thank Ministers and officials for supporting the Bill and those across the House, including the Opposition Front Benches, who have engaged in debate and, in particular, for the constructive spirit in which concerns were raised. I hope that those who had concerns have been reassured.

I believe that this Bill will increase awareness and improve access to services for people with Down syndrome. It is my hope that the Down Syndrome Act will open up a wider conversation on how to improve public services for people with other chromosomal disorders or disabilities, as well as all people living with learning disabilities. To this end, I am considering reviving my previous Private Member’s Bill, which would require the Secretary of State to undertake a public consultation to review the provision of services—including health and care, but also employment and housing—for all adults with learning disabilities. Perhaps the time is right to take things a little further and review the impact of recent and forthcoming legislative and policy developments. This includes the Down Syndrome Act, the Oliver McGowan mandatory training in learning disability and autism, the inclusion of an executive lead for learning disability and autism on integrated care boards, the planned integration of health and social care and building the right support action plan, among others.

When this Bill gains Royal Assent, in some ways, the real work begins with the process of creating the guidance. This is the time when all stakeholders will need to pull together and heal any divisions that have occurred.

--- Later in debate ---

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

My Lords, I begin by extending my congratulations to the noble Baroness, Lady Hollins. I am grateful to the noble Baroness for steering the Bill to this point. I also extend a warm welcome to those who were in favour of this Bill, some of whom are in the Public Gallery. I offer my thanks to the right honourable Member for North Somerset, Dr Liam Fox, who introduced this Bill in the other place. I also want to thank everyone else who has been involved in developing this important piece of legislation.

I know that a number of concerns have been raised, and I welcomed the scrutiny of the Bill two weeks ago at Second Reading. The Government recognised some of the points that were made. Noble Lords raised important matters about the risk of discrimination and widening inequalities, as well as how the proposed guidance could be developed, scrutinised and implemented in a fair and inclusive way. We have listened closely to these concerns, and I hope to reassure noble Lords on a few points so they can be confident in their support of the Bill and the impact it will have at this stage.

The guidance is about making clearer what steps could be taken by relevant authorities to meet the unique needs of people with Down syndrome. The Bill does not remove the duties under the Equality Act 2010 for relevant authorities to assess all the needs of people to whom they provide support. Our assessment is that, to prioritise funding and resources for people with Down syndrome above other groups without proper assessment of people’s needs would be considered unlawful.

The Government will consult with a broad set of stakeholders in developing the guidance, including those with other conditions. I want to be clear that people with lived experience will be at the heart of this at each phase of its development. We will strongly encourage and support people with other genetic conditions, disabilities and protected characteristics, and their advocates, to engage with this process. It is right that we support legislation that will improve life outcomes, reduce inequalities and build a fairer society.

[Baroness Hollins (CB)]

My Lords, I want to reassure noble Lords that I and others involved in this legislation, including seeing it through the parliamentary process, will do all we can to ensure that the process is as inclusive as possible. I know from experience that lived experience must be at the heart and soul of the creation of the guidance, and I welcome the reassurances given by the Minister here and the Minister in the other place on this. It has been a pleasure and an honour to sponsor this Down Syndrome Bill through your Lordships’ House.

Down Syndrome Bill

Baroness Hollins Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

Moved by

[Baroness Hollins]

That the Bill be now read a second time.

[Baroness Hollins (CB)]

My Lords, I thank Mencap, Learning Disability England, the Down’s Syndrome Association and the National Down Syndrome Policy Group, among others, for their engagement with me in discussion about this Bill, including many who identify as having Down’s syndrome, their families and friends. I welcome those who have come in person to listen today, including the right honourable Member, Dr Liam Fox MP, who drafted the Bill so skilfully and steered it through the other place.

Like Dr Fox, I began my medical career as a GP, but I then went on to become a psychiatrist. I declare an interest: my adult son has a learning disability and he has many friends who have Down’s syndrome. I remind the House that most of my medical career as a psychiatrist involved my working directly with people with learning disabilities, including people of all ages with Down’s syndrome. I sometimes say that the most important thing I have ever done is to keep asking the question, “What about people with learning disabilities?” The thing is, unless you know somebody with a learning disability, it probably would not occur to you to ask that question. It is so hard to keep this community of people in mind. We saw it during the pandemic on our TV screens and in debate in Parliament. Care was synonymous with care homes for older people. The protection of people with a learning disability living in the community and of people with Down’s syndrome, who were eventually shown to be in very highest risk category for Covid-19, were largely overlooked.

A few questions and challenges have been raised about the Down Syndrome Bill, and it is important that they are aired. However, I also want to instil a spirit of hope in our debate today. My mentor, Professor Joan Bicknell, who sadly died a few years ago, taught me the art of holding in mind where we want to get to. I will respond to some of the concerns that have been brought to my attention and will consider them in the context of how children and adults with Down’s syndrome, and other people with learning disabilities, are currently living.

The Down Syndrome Bill has passed all its stages in the other place and I am very pleased that I was asked to help steer it through this House. It will require the Government to publish guidance on the specific needs of people with Down’s syndrome and how to meet them, and indeed to lay the guidance before Parliament. The relevant public authorities providing health, education and social care would then have to give due regard to this guidance in carrying out their functions under existing legislation, including the Care Act 2014 and Equality Act 2010. The Bill focuses on those with Down’s syndrome as one of the most diagnosed chromosomal disorders associated with a learning disability in England. There are over 40,000 people living with Down’s syndrome, most if not all of whom have some degree of learning disability.

Some are concerned that naming a Bill after a chromosomal condition is taking things back a few decades to a time when the medical model predominated, and that a diagnosis of Down’s syndrome on its own does not tell us anything about the extent of a person’s learning disability or other associated conditions that an individual might experience. A diagnosis is important to parents, who want to know why this child is different from the one they were expecting—and, for different reasons, a diagnosis is important to health and care professionals. Of course, it is important that any diagnosis does not define the person.

Implementation of the guidance must focus on the people behind the diagnosis, but a diagnosis does provide a framework to understand the common health needs associated with a specific disorder. It is important for health and care professionals supporting people to know and recognise the co-morbid health problems that are either specifically associated with or occur more frequently in people with Down’s syndrome. These include cataracts, hearing loss, obstructive sleep apnoea, low thyroid function, increased risk of leukaemia, congenital heart defects and early Alzheimer’s disease. When I was a young doctor, I remember children with congenital heart defects who were not treated because they had Down’s syndrome; a failure to intervene reduced their life expectancy and, often, their quality of life. A friend of my son had a heart attack and died before Christmas aged just 41—such a loss.

When there is a recognisable characteristic, such as the facial features that make Down’s syndrome recognisable, two problems may occur. The first is that any behavioural changes or health complaints may simply be attributed to the already identified condition. There is the tummy ache caused by a peptic ulcer that is blamed on Down’s syndrome rather than being investigated—this is called “diagnostic overshadowing”. The second is that people with Down’s syndrome are stereotyped as being always happy, docile, eternal children and so on. As Caroline Boudet put it in the Huffington Post in 2017:

“When you have Down syndrome, the first disability you have to face is the way people look at you. It’s based on received wisdom, society conveys misleading information about this extra chromosome and what it is supposed to cause. Each of us has prejudice in mind, this shows no ill-will but just a lack of knowledge”.


The majority of people with learning disabilities do not have a known cause; they and their families do not know the answer to the question “Why?”, just as in my son’s case. Their diagnosis is learning disability of unknown aetiology. Some people have a different genetic cause from Down’s syndrome, and some acquire a learning disability in the perinatal period. Their learning disability may not be recognised as quickly as that of people with Down’s syndrome; it may be their speech or behaviour that, as it were, gives them away, however hard they try to mask the differences to be accepted for who they are.

Let us look at another challenge: that a Bill named after a condition that can be diagnosed prenatally and which could be eliminated, as it reportedly has been in Iceland, means that the Bill is not needed, and may present a challenge to women’s reproductive rights. But whatever noble Lords think about abortion, some of the 40,000 people currently diagnosed with Down’s syndrome will be around for 70 or more years. Life expectancy is getting longer. Even if no more babies were born with Down’s syndrome, every one of those 40,000 deserves a better deal than they are getting now. The Bill is simply about helping those born with Down’s syndrome to have their lives valued the same as those born without it, and to have their strengths acknowledged and their difficulties supported through an improved understanding of how Down’s syndrome can affect people and families.

The timing of this Bill complements proposals in other pieces of legislation currently being debated within Parliament. I welcome the acceptance by the Minister during debate in the other place of having a named person within each integrated care board to be accountable for the implementation of the guidance on the Down Syndrome Act. Her Majesty’s Government had already pledged in both the NHS Long Term Plan and the autism strategy that all integrated care boards will focus on autism and learning disabilities at the highest level; for example, by having a named executive lead for autism and learning disability. Just this week, the Minister in your Lordships’ House, the noble Baroness, Lady Penn, reconfirmed this commitment by saying,

“I confirm our intention that all integrated care boards should have a named learning disability and autism lead and that NHS England proposes to issue statutory guidance on this matter to assist integrated care boards. The Government are supportive of this approach and believe that learning disability and autism leads on every ICB would act as a voice for those with a learning disability and autism in commissioning decisions.”—[Official Report, 16/3/22; col. 396.]

The Minister also accepted my amendment to the Health and Care Bill, which puts mandatory training about learning disability and autism on the statute book. It is all happening this month. I believe that the passage of the Down Syndrome Bill through the other place last month and Her Majesty’s Government’s support for the Bill has assisted in getting both of these through.

I would like this Bill to go further and to include all people with learning disabilities. However, previous attempts to introduce Private Members’ Bills on learning disability have been unsuccessful, including the LB Bill and my own Learning Disabilities (Review of Services) Bill, which aimed to make provision for the Secretary of State to undertake a public consultation on the provision of comprehensive and integrated services for adults with learning disabilities. In his speech in Committee in the Commons on 26 January, Dr Liam Fox highlighted that, given the logistical difficulties in passing a Private Member’s Bill, a clear focus on one condition was needed to improve the chance of this legislation being passed. Supporting the Down Syndrome Bill is a step in the right direction and something that we can build on. In my view, it is an imperfect but pragmatic way forward and a good model for a PMB, and I believe that, if the Bill is welcomed in this House, it will indeed pass.

The Bill’s supporters expect it to set a precedent that will ultimately benefit the healthcare and support of everyone with a learning disability, not only those with Down’s syndrome. Dr Fox sees it as a bridgehead to open the door to better care and support for the whole community, but some in the wider learning disability community are worried that people with Down’s syndrome will get preferential treatment and that people with other diagnoses, despite having similar health and care needs, will be left even further behind. I ask for the noble Lord’s assurance that there will be transparency in the Bill’s implementation, specifically to ensure that resources allocated to support those with Down’s syndrome are not taken away from those currently supporting other people with learning disabilities.

We all know the financial pressures being experienced within adult social care. Many parents say the stress they experience is not about having somebody with a learning disability or with Down’s syndrome in the family; it is the constant battle with the authorities, whether over EHCPs, respite or something else. My current battle for my son is the cost of sleep-ins to sustain his independence.

It seems that it may be time for a new learning disability strategy, like the Valuing People White Paper I contributed to, with so many others, in 2001: something to tie together all the various pieces of ongoing work, including the soon-to-be-published Building the Right Support action plan, and in the light of the new integrated care systems, as well as the anticipated social care and Mental Health Act reforms. A new, overarching strategy could build on the provisions and benefits of the Bill for the wider learning disability community. I hope the Minister will be open to further discussions about the development of such a unifying strategy. Clarifying these concerns will ensure that the Bill is successful in its goal of improving the quality of life and health of people with Down’s syndrome, to raise awareness and foster inclusivity. There is such enthusiasm to get started on developing the guidance—it feels like the time is right.

In a spirit of hope, I agree with Dr Fox, who said,

“it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to”—[Official Report, Commons, Down Syndrome Bill Committee, 26/1/22; col. 5.]

people with similar needs. As awareness of the care and support that people need increases, I hope more resources will be allocated. I beg to move.

[The Deputy Speaker (Lord Faulkner of Worcester) (Lab)]

I call the noble Baroness, Lady Stowell.

--- Later in debate ---

[Baroness Hollins (CB)]

My Lords, I thank all speakers today for such a stimulating and informed debate, and others who were unable to be present, including my noble friends Lord Crisp, Lady Watkins and Lady Campbell, and the right reverend Prelate the Bishop of Durham, who had hoped to speak. I also thank David Nuttall, the Department of Health and Social Care civil servant who leads for learning disability, for his advice and help in preparing for today, and the Minister for his assurances.

I hope to reassure the noble Baroness, Lady Bennett, that there is no intention or possibility of this Bill affecting women’s reproductive choices. The Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. It cannot be used to amend primary legislation, such as the Abortion Act. The noble Baroness also mentioned that the Down’s Syndrome Association was not involved in drafting this Private Member’s Bill. I have spoken to the chief executive of the association at some length. When I asked her about the Bill, Mrs Boys said it would be more divisive to stop the Bill than to let it pass, and that it would be more constructive to work alongside others to ensure this guidance is as effective as possible. She told me that she supports it.

If amendments are laid, the Bill will be killed. If there are no amendments, Third Reading will take place on 1 April. If the Bill does not pass, it will fall into oblivion—yet again, out of sight and out of mind. There will not be another Bill for learning disability to replace it. The desire for the perfect is so often the enemy of the good. People who know me well know that I am absolutely committed to empowering people to be fully involved—it is absolutely “Nothing about us without us”. Would it not have been good if somebody with Down’s syndrome could have stood here today to speak about it?

In the other place, there was a commitment to ensure co-production of the guidance. The co-production and co-delivery of training is embedded in the Oliver McGowan mandatory training amendment, which we have spoken about and which was approved just two days ago. I believe assurances from Ministers that the consultation on the development of the guidance will be fully inclusive.

The noble Lord, Lord Farmer, spoke about 22q deletion syndrome. I know that the Minister in the other place specifically acknowledged that people with similar needs as people with Down’s syndrome would also be considered in the guidance. I believe that the Bill is another step on the way to improving access to the health, care, education and housing that all people with Down’s syndrome are entitled to in their desire to live fully participating lives in our shared world.

The former US President Calvin Coolidge said:

“Nothing in the world can take the place of persistence.”


I commit to continuing my drive to see people with Down’s syndrome and all people with learning disabilities lead full and healthy lives—ordinary lives—in inclusive communities. I believe that the first step to increase awareness and support for person-centred care for people with learning disability is to talk about it. The discourse in Parliament itself on this Bill is part of the jigsaw. Noble Lords will know that this was my approach in raising the issue of mental health up the agenda— first, get it on to the agenda. I am an optimist. I beg to move.

Bill read a second time and committed to a Committee of the Whole House.

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.

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
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 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.