Health and Care Bill

Baroness Bull Excerpts

2nd reading
Tuesday 7th December 2021 Lords Chamber

[Baroness Bull (CB)]

My Lords, I join other noble Lords in welcoming the noble Lord, Lord Stevens, to this House, and I join in the welcome for this Bill, in so far as it enables greater local collaboration to deliver integrated care. However, I also share concerns expressed across the House today that the Bill must do more to address the health inequalities exposed and exacerbated by Covid. The Bill offers a chance to make progress on reducing unfair, systematic and avoidable differences in health between different places and communities, yet its core duty in relation to this—

“to have regard to the need to reduce inequalities between patients”

in terms of access to and outcomes from health services —is unchanged from the existing legal framework despite this duty having failed to deliver the change required.

The narrow focus on access to and outcomes from health services ignores the key point that health outcomes are influenced most strongly by the social, economic and environmental conditions in which people live. As my noble friend Lord Mawson explained so well, NHS organisations are significant local players; they are rooted in their local communities, yet they operate at scale. By acting in place-based partnerships with local government, the voluntary sector and other anchor institutions, they could positively influence the broader social determinants of health in their locality; but retaining the current duty, as narrowly defined, misses this potential.

The new triple aim also fails to mention health inequalities, missing the chance to drive home the need for action. The Minister in the other place argued that the requirement to promote health and well-being, combined with existing duties, obviated any need for a specific reference, but the widening gulf in inequality suggests that existing duties are not enough. I hope that the Government will heed the calls today, including from my noble friend Lord Kakkar, for this omission to be addressed.

Also missing from the Bill is the explicit inclusion of parity of esteem for mental and physical health. A decade after the Health and Social Care Act 2012 placed a duty on the Secretary of State to secure parity of esteem, mental health services are still underfunded, with mental illness representing up to 23% of the burden of ill health but only 11% of NHS England’s budget. This Bill must unambiguously restate the commitment to parity, offsetting any suggestion that “well-being” be understood as a proxy for mental health; it is not the same thing.

One group disproportionately impacted by health inequalities is the 1.2 million people in England with a learning disability and/or autism. Annual mortality reviews have highlighted their increased likelihood of dying from causes that could have been treated, and of dying younger than their peers in the general population: 23 years younger for men with a learning disability, while for women it is 27. The NHS Long Term Plan prioritises people with a learning disability, while the Government’s autism strategy expects that all integrated care boards established by this Bill will have

“a named executive lead for autism and learning disability”.

So will the Government follow their own advice, and stipulate in the Bill that ICBs include this named lead?

Other noble Lords have spoken on changes to the cap. I want to highlight the impact on working-age adults in the social care means-tested system of the Government’s announcement on 17 November that local authority contributions towards care would no longer be counted towards the cap on a person’s total care costs. In England, a quarter of a million working age adults rely on social care to live independent lives, and they stand to be particularly disadvantaged. They are disproportionately asset- and savings-poor. They are likely to receive care for longer periods and therefore to accrue higher costs. They are also more likely to pay care costs that do not contribute to the cap, such as the cost of a personal assistant to enable them to work or enjoy social activities. Sir Andrew Dilnot proposed a zero cap on anyone developing an eligible need up to the age of 40 on the basis that they could not be expected to have planned for their needs, nor to have accumulated assets to pay for them. If the Government continue to reject a zero cap, how will they mitigate the risk of catastrophic care costs on those least able to bear them?

Finally, the Minister stressed again in his opening remarks that much of this Bill simply puts existing integration efforts into legislation or gives effect to policies emanating from the NHS itself; in other words, we are told that disruption is minimal. But this Bill is just one among a suite of reforms, White Papers, reviews, transformations and reconfigurations. The Government need to do more to articulate a vision for how they work together, and how, as a whole, they will deliver for communities, patients, service users and the workforce. They need to demonstrate to the people who will have to implement these changes, while dealing with the impact of a global pandemic, how all these measures will combine to significantly improve health and care.

Health and Care Bill

Baroness Bull Excerpts

Lords Hansard - Part 2 & Committee stage
Monday 31st January 2022 Lords Chamber

[Baroness Campbell of Surbiton (CB) [V]]

My Lords, I support Amendments 233, 234 and 235 in the names of my noble friends Lady Bull and Lady Greengross and the notice of intention to oppose Clause 140 in the name of the noble Baroness, Lady Wheeler.

The amendments propose less punitive charging regimes for social care users, and the notice to oppose reverses the regressive changes to the existing provisions. I support all of them to highlight on this occasion the unfairness of the Government’s charging formula on one particular group in society: working-age disabled adults.

Government amendments to the Care Act disproportionately affect working-age people, especially those with lifelong disabilities who draw on support for their day-to-day needs. It is no secret that I have long campaigned against such charges. Amendments 233 and 234 propose a zero charge on disabled people between the ages of 18 and 40, and Amendment 235 replicates the Dilnot proposals adjusted for inflation.

Care and support for those who depend on it is no less fundamental than healthcare is to survival. Without my care assistant to help me eat, drink, move and breathe, I would die, as I would if I did not receive medical care. Without access to support, I could not contribute to my community, and I could not work or enjoy life, but to live like my non-disabled peers, I would have had to pay for my care until I reached an £86,000 cap from the age of 18. In effect, it is a financial penalty on disability.

Before charging was introduced, working-age disabled service users could save for their first home, provide for a family, fund a university education and afford all the extra costs of disability such as housing adaptions or an accessible vehicle—to thrive as equal citizens. I was very lucky. I grew up during that time, which afforded me the opportunity to aspire to the same ideals as my non-disabled peers aged between 18 and 40.

Coming from very humble beginnings, I did not have a financial cushion, but I worked hard, saved like crazy and spent wisely—all the characteristics that this Government want their citizens to emulate. And look, the policy succeeded, due largely to a then no-charging policy. Here I am today, participating in vital scrutiny, equal among my “peers”. If I had been born 25 years later, it would have been a very different story.

In his foreword to the Government’s disability strategy, the Prime Minister says that it is the Government’s

“determination to level up the country so that whoever and wherever you are, the spark of your talent and potential can be connected with the kindling of opportunity”,

yet this Bill introduces a social care means test which drives disabled people into poverty and places a cap on aspiration.

Those with assets of less than £20,000 will continue to pay out of their income towards the cost of their social care. This includes pensions, means-tested benefits and extra-costs benefits such as personal independence payment, disability living allowance and attendance allowance. They are all regarded as income in the social care means test. Local authorities will undoubtedly raid these entitlements, intended to fund additional disability costs, to pay for social care. The charging reforms do nothing to address this injustice.

Consequently, those without means, unable to supplement their income through work or savings, will be forced to go without vital support. With the hike in energy bills next April, some will also go without fuel. Charging for care will prevent these young people getting on with life and building up a nest egg. Once their savings reach £20,000, they will be looted and their future security denied.

Take Sarah, aged 34. She has a learning disability and lives in supported housing with social care support for meals, budgeting and running a home. She gets housing benefit for her rent, but with no assets and being unable to work, Sarah is reliant on disability benefits for all other essentials such as food, fuel, council tax, social activities and clothes. She has been paying £81 a week towards her care package but last April the council told her that this would increase to £125. It will take Sarah 13 years to reach the cap, living on only £160 a week. If she were under 25, it would be even less—£141. Sarah will pay the same as someone with assets of £55,000. How on earth can this be described as fair? Sarah, and thousands of others like her, will not be living. They will be barely surviving.

In his Second Reading speech, the Minister said:

“The Government recognise that their amendment to the adult social care charging system was considered controversial. However, it is necessary, fair and responsible.”—[Official Report, 7/12/21; col. 1779.]


What is fair about holding down disabled people in poverty? What is responsible about limiting their ability to survive and prosper? Rather than liberating them, this charging policy will undermine their well-being and lock them in a state of avoidable and costly dependency.

I ask the Minister to work with disabled people’s organisations, myself and my colleagues before Report stage to find a fairer way to enable these service users to thrive, and to consider essential care and support services as a long-term investment rather than a drain on the Exchequer. I urge Members across the House to support these amendments and, in doing so, offer younger working-age adults with care and support needs equal life chances.

[Baroness Bull (CB)]

My Lords, Amendments 233 and 234 are in my name and I am grateful for the support of my co-signatories and of Mencap and nine other working-age disabled adult charities, whose concerns these amendments reflect. Clause 140 would amend Section 15 of the Care Act 2014, which places a limit on the amount adults can be required to pay towards eligible costs over their lifetime. The Government intend to set that cap at £86,000, irrespective of age and income.

My amendments would “switch on” the section of the Care Act that allows different rates to be set for specific groups, and define one specific group as people between the age of 18 and 40 who are eligible to receive care and support. The effect would be to implement Dilnot’s recommendation that people entering the care system at or under age 40 have their care costs capped at zero. This would apply both to new applicants and to existing users who have accessed care and support since before the age of 40.

The Government have argued, and expert bodies have accepted, that no one will be worse off under their proposed charging reforms. But this does not make them fair and it does not make them just. They fail to recognise that people with mental, physical and learning disabilities will need additional care and support to participate equally in opportunities that many of us take for granted. They also fail to acknowledge that this inevitably leads to higher costs of living and leaves working-age disabled adults with little or no chance of accumulating assets or savings.

The Government’s impact assessment shows that savings and assets are particularly low among younger adults: 73% of 16 to 35-year-olds have made no plans to pay for social care, and ONS figures show that wealth for households where the head is 55 and over is 25 times higher than households aged between 16 and 24. But, of course, all these figures refer to the working-age population who are able to work and therefore earn, and employment rates among disabled people are shockingly low. Just 50% are in work, and this drops to 20% for those with a learning disability. This of course means many disabled people do not have access to regular earnings or career trajectories that deliver rising salaries. So, not surprisingly, disabled people have, on average, £108,000 less in assets than their peers without disabilities. According to the Joseph Rowntree Foundation, 38% of working-age disabled adults in the UK live in poverty.

On top of these limited opportunities to earn and save, most working-age care users have a long-term condition or disability that will require costly care and support long before they reach old age and, in many cases, from birth. Scope tells us that, on average, disabled people face £583 of extra cost for every month of their lives. And, of course, very few have the resources to self-fund their care. The vast majority are either below the lower capital limit or in the means-tested system. In this case, their care needs are assessed and those needs deemed eligible are part-funded by the local authority. Needs deemed ineligible are not funded, but they are still needs, and needs have to bet. Often, this is the kind of care that enables the interactions with the workplace and social and leisure opportunities that my noble friend Lady Campbell spoke about. As funding pressures on councils lead to further squeezing of eligibility criteria, as she described, more disabled people are having to fund more care from their own pockets.

But of course, as we heard when the Government introduced new amendments on Report in the other place, this contribution will not count towards the cap. Only the amount the individual contributes to the cost of their eligible care needs will count towards the cap—not the support they receive from local authorities and not the cost of ineligible needs, even though they are genuine needs and funded entirely from individuals’ own pockets. So the consequence of this controversial change is that those people least able to afford it will be spending a greater proportion of their assets and income on social care costs. Let us be clear: that income will come from benefits. The impact assessment says its calculations

“assume users do not make contributions to their care from their income and … all contributions are from user assets.”

But in the very next line, it admits:

“In reality, whilst income from employment is excluded from the means test, income from some benefits would be included.”


So disabled people not only face higher care and support costs but are less likely to be able to earn and therefore save—and they are experiencing parallel pressures on their benefits income from rising care contributions.

The Government’s analysis does not take this into account. These oversights in the analysis cast serious doubts on whether enough has been done to understand the specific needs of younger adults requiring care and how they differ from older people. No one would argue that older people do not deserve support, but it is hard not to conclude that the Government’s reforms are primarily concerned with people who develop care needs in later life, having built up assets and savings, at the expense of working-age adults with long-standing needs.

We have already heard the Minister this evening refer to the danger of unintended consequences. I urge him to consider the consequences of these reforms for those people who most need support and to consider my amendments as a fair and just way to protect them from catastrophically high costs they cannot afford for care they cannot afford to live without. “No one will be worse off” is not, I am sure, what this Government mean when they talk about levelling up. We can and should aim higher.

[Baroness Thornton (Lab)]

I am standing here to speak in the place of my noble friend Lady Wheeler, because—as irony has it—she is a carer and has had to go home to care for her husband. I find that an irony. My noble friend wanted to speak at this point because we are very keen to make our points in the debate on clause stand part. First, I congratulate the noble Baroness, Lady Bull, who tabled Amendment 233, which leads the discussion on this highly controversial clause. She spoke with clarity and precision—and, of course, I thank her for her support of the other amendments.

Health and Care Bill

Baroness Bull Excerpts

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

Tabled by

[Baroness Bull]

143: After Clause 155, insert the following new Clause—
“Social care cap for younger adults
In section 15 of the Care Act 2014 (cap on care costs), after subsection (4) insert—“(4A) The Secretary of State must ensure that regulations made under subsection (4) specify a zero amount for adults—(a) who are under the age of 40 when they first receive care and support to meet their eligible needs, or(b) who have eligible needs which first required care and support before they reached the age of 40.’’”Member’s explanatory statement
This new Clause would ensure that adults entering the care system under the age of 40, or who were under 40 when they first entered it, would have their care costs capped at zero, in line with the Dilnot report recommendation.