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.

--- Later in debate ---

[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.

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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
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 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 & 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.