All 3 Baroness Hollins contributions to the Down Syndrome Act 2022

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Fri 18th Mar 2022
Down Syndrome Bill
Lords Chamber

2nd reading & 2nd reading
Mon 28th Mar 2022
Down Syndrome Bill
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Order of Commitment discharged & Order of Commitment discharged
Fri 1st Apr 2022
Down Syndrome Bill
Lords Chamber

3rd reading & 3rd reading

Down Syndrome Bill

Baroness Hollins Excerpts
Moved by
Baroness Hollins Portrait Baroness Hollins
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That the Bill be now read a second time.

Baroness Hollins Portrait Baroness Hollins (CB)
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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.

Lord Faulkner of Worcester Portrait The Deputy Speaker (Lord Faulkner of Worcester) (Lab)
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I call the noble Baroness, Lady Stowell.

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Baroness Hollins Portrait Baroness Hollins (CB)
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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.

Down Syndrome Bill Debate

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Baroness Hollins

Main Page: Baroness Hollins (Crossbench - Life peer)

Down Syndrome Bill

Baroness Hollins Excerpts
Order of Commitment discharged
Monday 28th March 2022

(2 years ago)

Lords Chamber
Read Full debate Down Syndrome Act 2022 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Moved by
Baroness Hollins Portrait Baroness Hollins
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That the order of commitment be discharged.

Baroness Hollins Portrait Baroness Hollins (CB)
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My Lords, I understand that no amendments have been set down to this Bill and that no noble Lord has indicated a wish to move a manuscript amendment or to speak in Committee. Unless, therefore, any noble Lord objects, I beg to move that the order of commitment be discharged.

Motion agreed.

Down Syndrome Bill

Baroness Hollins Excerpts
Moved by
Baroness Hollins Portrait Baroness Hollins
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That the Bill do now pass.

Baroness Hollins Portrait Baroness Hollins (CB)
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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.

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Lord Kamall Portrait The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
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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 Portrait Baroness Hollins (CB)
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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.