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Volume 835: debated on Thursday 18 January 2024

Question for Short Debate

Asked by

To ask His Majesty’s Government how they plan to create a parity of esteem between health and social care to address dementia.

My Lords, I declare my interests as co-chair of the All-Party Parliamentary Group on Dementia and as an ambassador of the Alzheimer’s Society. I bring this debate to the House today because dementia affects 944,000 people in the UK, or one in 11 of those over the age 65, and the number is predicted to reach 1.6 million people by 2040. It is the leading cause of death in this country.

Dementia is an umbrella term for a number of conditions, the most prevalent of which is Alzheimer’s. Symptoms include memory loss, behavioural change, motor function loss and visual processing issues, among many others. It is degenerative and terminal and, as of now, there is no cure. All stages of the disease have a need for both social care and healthcare, from diagnosis to death. Ironically, diagnosis is still a long wait in many parts of the country. Unfortunately, we do not know how long people are waiting because the data is not collected. I will say more later about end-of-life care.

It is essential that these two services—health and social care—work in tandem and are resourced to enable them to do so. This will avoid the historic tension of buck-passing of responsibility, excessive delays in support and letting down both the patient and their carers. I know that many Members of this House have first-hand experience of caring for people with dementia—I do myself. To give a real feel for what this is like, I commend the current ad on our screens from the Alzheimer’s Society called “The Ultimate Vow”—noble Lords may have seen it—which portrays Laura and Adam, a married couple on their dementia journey. It is very moving and also very accurate.

Today, I would like the Minister to address healthcare and social support as of equal value and inseparable. That requires not just parity of esteem between them but a reorientation of systems away from siloed professions and a focus on care in hospital. Shockingly, NICE reports that one-quarter of hospital beds are occupied by people with dementia, often due to emergency admissions for avoidable reasons such as falls and urinary tract infections. I therefore say to the Minister that there is no more compelling reason for hospital at home, including residential care homes, than this group of people, and I add that that should also apply to hospice at home. Decades of failure to plan and resource services adequately to enable personalised care for a condition as complex and as common as dementia is long overdue. Starting from diagnosis, all patients should have a care plan, which clearly will need reviewing as things change, for change they will, becoming more challenging over time. In six years of caring for my husband with Alzheimer’s, nobody ever suggested a care plan. The one that I had was one that I devised in my brain. Care plans should apply to everyone, including those who are self-funding.

Less than 65% of people with dementia have a formal diagnosis—a figure we simply would not tolerate for other conditions. We are not talking just about people with memory lapses; at all stages of the pathway trained staff are essential. I welcome the Government’s recent announcements of funding for social care training. Only 45% of the social care workforce have a record of dementia training, but please do not forget healthcare: district nurses receive good training, but training for hospital ward staff, even those on some geriatric wards, requires improvement, particularly on caring for people at the end of life. Some 30% of people with dementia do not die in their normal place of residence. Aside from the disorientating activity of an open ward or an A&E department, we should think twice about admitting anyone with advanced dementia into hospital unless there is a real medical imperative. Neither nurses nor healthcare workers are properly trained to provide palliative care for dementia patients. They certainly cannot provide the one-to-one care necessary. I know that my noble friend will have noted my earlier request for hospice at home for dementia patients.

There are more ways that we need parity and integration, and the establishment of integrated care systems in England provides some hope of a mechanism through which they might be achieved. There is no specific mandate for them to focus on dementia, but they are required to commission on local need.

The APPG on Dementia published a report last month entitled Raising the Barriers, which proposed local dementia strategies for each area, a named dementia lead in each integrated care system and a dementia steering group. Is this special pleading? Yes, it is and I make no apologies for it. The scale of dementia nationally is going to increase and, while we all hope that medical science will one day alleviate this challenge, this is today’s challenge and tomorrow’s and the day after’s. This would be a huge move forward, combining health, social services and the voluntary sector.

Can the Minister say what the rules are for the decision-making of integrated care systems being made publicly available? Recently, owners of care home providing for people with dementia expressed concern to me about the transparency of decision-making, particularly on the transfer from hospital to residential care for the first time.

So far, I have not mentioned the cost to the patient or their carer. We have had many debates in the House about personal expense to the individual. The Alzheimer’s Society estimates that two-thirds of the annual cost of dementia, reckoned at £34.7 billion, is paid for by people with dementia and their families, either in unpaid care or in paying for private social care. In addition, care providers often charge an extra premium because of the complexity of dementia, adding 15% to costs. Additionally, support such as NHS continuing healthcare, including for complex health needs, is not easily obtained for dementia.

I realise that the much-promised reform of social care will be the catalyst that makes the financial cost to the individual more bearable, but that is now deferred until 2025. In the meantime, there is much that can be done to bring parity and fairness to the lives of dementia sufferers and their carers. I hope that the Minister finds constructive suggestions in our contributions to this debate that he can take forward. I am grateful to all Members here and to the Alzheimer’s Society and the House of Lords Library, which provided briefings in preparation for this debate.

My Lords, I give my thanks to the noble Baroness, Lady Browning, who, against convention, I should call my noble friend, because we have worked together on these issues for many years. I thank her not only for securing this debate but for hitting the nail on the head when it comes to the situation between health and social care. That lack of parity of esteem is at the root of all the problems she outlined.

Although a health condition and the biggest cause of death in the UK, dementia receives most attention through not the NHS but social care, which has always been the poor relation—the tail-end Charlie—vis-à-vis the NHS. That did not matter in 1948 when it was set up, because we all died much earlier, but as we grow older, with greater incidence of dementia and other comorbidities, it matters hugely. It matters for diagnosis—the noble Baroness mentioned the long waits—or the absence of any diagnosis at all. It matters for services, both the access to services suitable for dementia patients and their carers, and the quality of the services. We heard from the noble Baroness, Lady Browning, about the lack of training of many people who provide those services. It also matters for access to medication, because we hear about the postcode lottery of what dementia medication is available.

Of course, its effect is nowhere more significant than it is on the biggest providers of care for those with dementia: not the NHS or social care but their own families—the spouses, sons, daughters and friends—who are often locked into an intolerable situation by the care they provide, however willing they are to undertake it. They suffer financially—we heard about the enormous costs of care—and they suffer physically, as their physical and mental health is at risk. Three-quarters of all carers report damage to their health as a direct result of their caring. They lose financial security and end up in poor health and often isolated, since their social circle shrinks dramatically. If there were more parity, we might be able to focus more on preventive services for dementia sufferers and their carers. There is no cure, but the progress of the disease can be slowed, or its onset delayed, by such things as exercise, group activities and interest groups—just the sort of things that are cut in times of austerity.

I hope the Minister will assure the Committee that the Government are committed to providing diagnosis and support at the earliest possible stage, and that they will shortly publish a long-term workforce strategy, such as the NHS one, for the social care workforce. I remind your Lordships that one in three of us will get dementia—that is seven people in this Room. We owe it to ourselves as well as future society to make it a priority.

I thank the noble Baroness, Lady Browning, for drawing attention to this timely and important issue. I am a neuroscientist working on brain mechanisms that underlie dementia and, accordingly, I declare an interest as the founder and CEO of a biotech company, Neuro-Bio Ltd, which is developing a novel approach to the diagnosis and treatment of Alzheimer’s disease. From first-hand experience, I can speak to the importance of strengthening the dementia research landscape. It is only by increasing resources for research that we will ever be able to realise if not a cure then, very plausibly and at last, a truly effective treatment. I thank the Alzheimer’s Society for its assistance in preparing these remarks on the situation in the UK, where, as we heard from the noble Baroness, Lady Browning, some 900,000 people are already living with dementia, a figure expected to rise to 1.6 million by 2040. As we also heard, one in three of those born today will develop the condition in their lifetime.

Yet combating this devastating disease is still not seen as the political priority it needs to be, and it has been historically underfunded. For example, just 31p is spent on dementia research for every pound invested in cancer research. That said, we should welcome the launch last year of the Government’s £95 million commitment to the Dame Barbara Windsor dementia mission, but we now need to see a delivery timeline for this funding, and we urgently request further detail about how the Government plan to invest the money.

But it is not just about the money. The APPG on Dementia, of which I am a proud member, released in 2021 a report entitled Fuelling the Moonshot, which found that people affected by dementia feel a sense of empowerment from being involved in research, but also that patients are often unaware of the opportunities to take part. This has to change—action must be taken to improve participation in, and access to, clinical trials. Recent investment in research is welcome, but it will be wasted without increased participation in these studies.

Moreover, any consideration of those living with dementia also needs to include the carers. This is where social issues should be given equal attention. In 2011, I gave a lecture tour on behalf of Alzheimer’s Australia, and I still vividly recall a conversation with a husband who had been caring for his wife, to whom he had been married for many decades. In the early hours of one morning, when he was changing her incontinence pads during a bout of diarrhoea, she, the love of his life, just stared at him, questioning who he was. It was then, he said, that he snapped. This gentleman described his situation as a “living death”, which is a phrase that I have heard repeated by other carers of those with dementia. Often, those closest undergo all the experiences of bereavement, no longer able to share memories with a very special individual who none the less is still breathing. The big difference is that society does not accord them the time and support it would to those grieving an actual death.

We need more resources for research, action on optimising clinical trials and wraparound support for the carers. Indeed, as highlighted in this debate, we need parity in health and social care. Dementia presents the biggest unmet clinical need of our time. Let us work towards a future where we are no longer haunted by the spectre that perhaps, one day, we will ask our spouse who they are, or that they in turn will describe their life with us as a living death.

My Lords, I am grateful to my noble friend for tabling this debate. As well as having family experience, I also served on the Joint Committee on the Draft Mental Health Bill.

Lack of parity has created complex administrative processes for practitioners, patients and families. It is clear to me, from having two elderly relatives needing support, that you risk not getting the best outcome if you do not understand the system and are not able to advocate for them. With the first relative, we had the baptism of fire of continuing healthcare assessments. Putting aside the obvious distress to the patient and relatives caused by these meetings, there is also the time off work and lost income. The typical cast at these meetings would be the nurse, manager and staff of the nursing home, the discharge team from the hospital, social workers, patient and relatives. Meetings last one to two hours, plus travel time for the professionals, of course, as they have to take place in the nursing home. They may also need to be repeated or paused as the patient may be in and out of lucidity or competence.

The amount of resource gobbled up by these meetings was remarkable, and we had three attempts at it. Often the agenda seemed not to be about nursing care requirements, just whose pot of money it would be coming from—it is all taxpayers’ money, of course. Can my noble friend the Minister outline what assessment has been made by the Government of how much the process of continuing healthcare assessments is costing the NHS? If there was the parity outlined by my noble friend Lady Browning, this resource could of course be saved.

By the second relative, we were no longer newbies but, in that case, we bumped into the Mental Health Act. Some forms of dementia include mental health symptoms, such as delusions or hallucinations. My relative, who had such symptoms but had not yet been diagnosed with dementia, consented to going into a secure mental health hospital. I was quite affronted when a friend who commissions local authority services said to me, “Shame they consented and weren’t detained under the Mental Health Act”. Later, when I was on the draft Bill committee, I knew what he meant: Section 117, on aftercare. Although not automatic, it includes accommodation and can include all your care, hence the Times newspaper headline back in 2014: “The ‘secret’ law that means dementia care can be free”. It is not means-tested and you do not have any more continuing healthcare assessment meetings.

Can my noble friend the Minister outline whether there is data on how many people with dementia are detained under the Mental Health Act without any pre-existing history of disease? Also, is he aware of the anecdotal reports of clinicians now feeling under pressure to detain people when relatives know that it will not alter the care but could save them tens or hundreds of thousands of pounds? Are we at risk of this coming to be seen like the EHCP situation, where relatives know that the Mental Health Act will lead not only to the best care but to the taxpayer funding it? More importantly, is this adding to the pressure on NHS mental health beds?

Nothing that I have said detracts from the amazing care staff, who were often as bemused as we were by this not so wonderful world of administration and bureaucracy. Surely there must be a better, kinder and more efficient system.

My Lords, I thank the noble Baroness, Lady Browning, for initiating this debate. I look forward to the day when this debate is held in the main Chamber.

Losing a loved one while they are still alive is a particularly gruelling experience and any assumptions that one makes about diagnosis and care turn out to be wrong. For example, I had assumed that hospice care took place in hospices. I am not criticising the hospice movement, far from it; its development of care at home, particularly in London, is quite remarkable, and I pay tribute to St Christopher’s Hospice for its invaluable support to me. I had also assumed that there was a system; I was wrong again.

In the short time available, I will concentrate on diagnosis and a social care workforce strategy. As has been said, more than 250,000 people live with undiagnosed dementia in England alone. We have one of the lowest per capita ratios of MRI, CT and PET scanners in the OECD, behind Russia, Slovakia and Chile. Recent effective disease-modifying treatments are not yet approved or commissioned in our country, but, even if they are approved, they require early diagnosis of Alzheimer’s disease and, at present, only 2.2% of people receive the tests in the diagnosis process. Will the Minister tell us what steps the Government are taking to invest in diagnostic infrastructure for dementia? The Alzheimer’s Society has said that improvements in diagnosis should be part of a major condition strategy between the NHS and the Government to put in place a funded plan to improve rates beyond the national ambition of 66.7%, if possible. What plans do the Government have for a major conditions strategy?

My second point is about a social care workforce strategy. The care workforce pathway is a welcome step to improve career development and increase access to training, but it falls far short of a comprehensive long-term social care workforce strategy providing a trained workforce. There are 152,000 vacancies in the adult social care workforce, with 390,000 leaving their care jobs annually. Only 45% of care staff are recorded as having any level of training in dementia, and training is not mandatory. The Alzheimer’s Society has called for a minimum mandatory level of training in dementia for all care staff to tier 2 of the dementia training standards. Can the Minister say when a long-term social care workforce strategy might be available?

The Office for National Statistics identifies dementia as the UK’s biggest killer, with one in three people due to develop it. Why is it not on the front pages of newspapers? Why is it not a political priority? Why does it have the same level of obscurity that cancer had 50 years ago? Perhaps it is reduced to individual human misery and dread for the future, and those affected do not have the resilience to force the pace. Does the Minister think that the Government have any responsibility for this?

My Lords, I share the views of the noble Baroness, Lady Browning, on parity of esteem, but my contribution will concentrate on the problems caused by a failing NHS and a failing adult social care system. It is very difficult to achieve parity of esteem between the two services if both are failing and both are trying to shift costs to someone else.

I declare my interest as a member of the three-person Dilnot commission on social care funding. Our 2011 report had cross-party support and was accepted in principle by the coalition Government. For less than £2 billion, we demonstrated that it would be possible to cap at £50,000 individuals’ lifetime liability to pay for adult social care. This would have made a real difference to people with dementia. Despite legislation to implement our proposals, successive Chancellors from George Osborne onwards have deferred implementation. Jeremy Hunt has now achieved what his predecessors achieved by deferring the introduction of any form of cap until at least October 2025.

This is only part of a very sorry social care saga. Successive Governments since 2010 have allowed the funding of adult social care to decline relative to the funding of the NHS, increased service demands and the true cost of care for our ageing population. This approach has reduced NHS capacity, with more elderly patients admitted to, and staying in, hospital for longer because of the absence of social care. Governments have relied on council tax increases and occasional government handouts, rather than thinking through the funding of the social care system—even though one Prime Minister said that he would fix social care within a year; guess who. Whatever glowing account the Minister may give of the Government’s track record on social care funding, the really accurate assessment of that funding is set out in the King’s Fund contribution to the Library evidence for this debate.

Asking the NHS to do more for dementia patients in its current state is totally unrealistic. I am afraid that it is a failing institution in many parts of the country: it has not met its main access targets since before Covid, it has a backlog of about 7 million patients awaiting treatment and it is as short of staff as the adult social care system. It is totally impossible to think about making huge changes to improve services for dementia if we cannot repair the basic structures of the NHS and the adult social care system.

My Lords, as both a member of the APPG and formerly a carer for my late mother, who suffered from vascular dementia, I welcome this debate and thank the noble Baroness, Lady Browning, for bringing it forward.

We are facing a tsunami of additional care needs in this country as a result of dementia, and it will require a step change from government, of what whatever political complexion. A myriad of solutions is required—some of them have been outlined today—but the noble Baroness, Lady Browning, was right to highlight a key component: parity of esteem between healthcare and social care.

Some of the implications of that lack of parity at present can be seen. It has been mentioned already that 45% of the social care workforce does not have direct training in dementia. The number of vacancies within social care is estimated to be 192,000, because there is a difficulty with both recruitment and retention of staff. The implication for individual dementia patients and their families across the country is a postcode lottery where both the quantity and the quality of care are deeply variable. For many of those families, the gap in what can be provided to them means that what they get simply does not cover the needs of the individual patient, and, somehow, they have to cope both financially and from a caring point of view to fill that gap.

If we can meet this issue of parity, there are a number of benefits. First, in many ways, we are facing an even greater difficulty than the official estimates of numbers show. Fortunately, we are beginning to see some solutions. New drugs are likely to appear in the near future, and they will at the very least slow the progress of dementia. That is a very good thing—it will mean that people live longer—but the implication of it is that, ultimately, we will probably have a lot more people with dementia. It will also shift the pressures from healthcare directly and to a much greater extent on to social care.

Secondly, parity will act as a driver for a much more joined-up approach to tackling dementia. In Northern Ireland, healthcare and social care have always been under one department and one system. That is not necessarily a panacea, but no one in Northern Ireland would try to disaggregate those two elements—it is perhaps one of the rare occasions when the rest of the country could learn something from Northern Ireland.

Thirdly, as indicated, parity would have major financial implications for the country’s healthcare. Too many people are unnecessarily in hospital and too many are not only admitted to hospital when they do not need to be but bed-blocking because there is nowhere to place them. Most of all, it will increase choice for families. For many who have dementia, being in hospital or in a residential home is either a choice they make or, from a practical point of view, there is not really an alternative. However, on many occasions, it has been forced on people because they do not have the choice.

Dealing with the issue of parity between healthcare and social care will be a key driver in ensuring that we can look after those with dementia and their families to meet the needs not just of now but of the future.

My Lords, I welcome the ability to participate in this debate and I congratulate the noble Baroness, Lady Browning, on securing it. I wanted to participate in it as I have family members and political colleagues who, sadly, have either died as a result of dementia or are currently living with it. For me, one of the keys is diagnosis and the need for greater levels of investment in diagnostic tools and then medicine to slow down the progression of the illness.

More than a quarter of a million people are living with undiagnosed dementia in England. More than one-third of people with dementia in England and Northern Ireland do not have access to a diagnosis and, therefore, to the vital care and support it unlocks. Like the noble Lord, Lord Weir, I am a member of the APPG. We readily know the problem in Northern Ireland, and I agree with him that there is definitely a measure of equality in the integration of health and social care.

Part of the problem to do with diagnostic tools is the lack of magnetic resonance imaging and computed tomography scanning capacity in the memory assessment pathway, and lack of positron emission tomography scanners for accurate diagnosis of dementia subtypes. We have one of the lowest per capita ratios of these scanners in the OECD; we are behind Russia, Slovakia and Chile. Can the Minister advise on what steps the Government are taking to further invest in diagnostic infrastructure for dementia?

Furthermore, with the Government’s proposed reforms to the MHRA, cutting-edge medicines could be made available in the UK much more quickly than previously. This includes drugs such as lecanemab and donanemab—the first drugs proven to slow down the progression of Alzheimer’s disease. This means that the NHS must also be supported to prepare for this prospect. I therefore ask the Minister to provide details on what steps the Government are taking to prepare the NHS to deliver ground-breaking treatments such as those already mentioned. There is also a need for an adequate long-term social care workforce strategy, which has already been referred to by the noble Baroness, Lady Browning.

I look forward to the Minister’s answers. I hope that he will be able to provide a pathway to better investment in diagnostic tools and the provision of medicine to slow down the progression of dementia.

My Lords, like the noble Baroness, Lady Browning, I am proud to be an ambassador for the Alzheimer’s Society. I spent my entire working life as a psychiatrist, working with older people who mostly had dementia and depression.

The situation has got a lot worse in both health and social care since I started working in it. The situation in the health service is appalling, in that they have no training with dementia, and that has not improved. In fact, most people in the health service have no idea what social care is. Indeed, if you asked most of the ladies and gentlemen in our main House, they would not have a very good grasp of what social care is either.

First, we need a total rethink around how we educate the general public about what this disease is about and how it imposes costs on society. The phrase “parity of esteem” is all very well and I like it—it started as a funding phrase in the United States—but almost all the real costs of dementia in this country fall on social care services and on families. At the moment, the estimated cost is £27 billion. Of that, a good 80% is spent by families and social care.

It is not the severity of dementia that demands care; it is the activities of daily life. There was a lovely, elegant piece of research in Denmark looking at what factors of dementia require care from others, and they are always the activities of daily life. That is what social care is and where we should put most of our money.

I do not agree that more MRI and PET scanners would make a jot of difference to diagnoses because a diagnosis is usually made by the family or home carers before they get anywhere near. I know it is nice that we can now diagnose; I had a lecture called “150 Types of Dementia”, which went down a bundle at Queen Square I can tell you. The reality is that half a dozen are interesting, and there are some more that we are starting to understand better, but that is not the issue. It is about very basic care. The drugs will not be around for a long time yet. The ones we have now are nowhere near fruition in terms of clinical service to all the patients who need them.

I back up what my noble friend Lord Warner said about the need to fund both organisations—health and social care need to be integrated to deliver this service—but we are a hell of a long way off.

My Lords, I am grateful to the noble Baroness, Lady Browning, for this debate. There are some repeated themes to our questions and debates that we need because these are complex challenges affecting millions of people that require a hard slog and real attention to detail. I have learned a lot about the specific challenges and solutions from all the speakers in the debate.

I will first return to some of the issues raised in the Oral Question on social care today. The noble Baroness, Lady Donaghy, rightly flagged it is not just the number of care workers, but their skills, which are quite different for carers who have to deal with people with dementia. I hope the Minister will talk, as he did earlier, about the Government’s intention to upskill care workers.

On the numbers, it is important that much of this care will be delivered in the home, over the long term, yet the skills care data shows that vacancy rates are higher in the domiciliary sector than in care homes. They are still running at over 10% and are barely improving. Does the Minister agree that we need to make social care roles more attractive, which must involve decent salaries that increase as skill levels increase? Is he concerned about the acute problems in the domiciliary sector? The numbers suggest that the Government’s actions to date have not had the same effect there that they may have had in care homes.

Another key issue that I want to raise is around long-term conditions generally and specifically dementia. There is a lot of discussion about who pays for these services and which budget they come from. The noble Baroness, Lady Berridge, highlighted this with a very graphic example. The questions are about who pays, where the budgets sit and, critically in this area, self-pay, which was referred to by the noble Lord, Lord Warner. These questions are still wide open; they have not been resolved. No one can say, hand on heart, that they understand what the long-term path is when someone has a diagnosis, who is going to pay for their care and how that will be resolved over the long term.

The split between the NHS and local authorities has long been recognised as an issue. Integrated care boards have been highlighted as the solution that bridges that divide. Can the Minister say how this is going for dementia services? Are there now examples of real pooling of resources for patient-focused services, which is the promise of the integrated care board? The noble Lord, Lord Weir, talked about the example of Northern Ireland, and my fear is that people are already queuing up to see the integrated care boards fail and that they will be booking another reorganisation of the NHS in England.

The example of Northern Ireland given by the noble Lord, Lord Weir, was very telling: he said that no one would go back. I hope that we do not go back; I am not wishing for that outcome. However, unless we see real pooling of resources, real patient focus and a genuine overcoming of this crazy divide where some public money is in Pot A and some in Pot B, we will not have made the progress that we needed. I hope the Minister agrees that dementia services in particular are a prime example of a test case on whether ICBs can deliver the promise that was in the legislation.

My Lords, I thank the noble Baroness, Lady Browning, for this debate and for giving us the valuable—if nowhere near long enough —opportunity to shine a spotlight on many key issues that were at the heart of the scrutiny of the social care cap provisions of the Health and Care Act. In particular, I note its impact on people with dementia and our concerns about how NHS continuing healthcare operates arbitrarily with regard to people receiving free care or having to pay for it themselves, as well as how we move towards genuine parity between the NHS and social care and how good social care is vital for people with dementia and their carers. The current social care system is just not set up to meet these needs.

I have three points. First, on carers, the 60% of people with dementia drawing on care at home are being cared for by their spouses and relatives—mostly unpaid carers, as my noble friend Lady Pitkeathley again reminded us. As a carer myself, I meet many unpaid carers locally who are daily, for 24 hours, looking after loved ones at various stages of dementia, most of them with breaks of only a few hours a day or a week. The carer role is often rewarding, but it is also relentless for many. We urgently need a comprehensive national carers strategy, and I look forward to the Minister’s explanation of why we do not have one.

I turn, secondly, to care costs and the devastating impact of the financial costs for those living with dementia and their families—an average of £100,000 is spent by individuals over their lifetimes. Despite extensive modelling at the time of the 2022 Act showing that just 19% of people with dementia would reach the care cap, and despite the disproportionately detrimental impact on dementia sufferers in some of the poorest parts of the country, it would have made a start as part of a wider package of reforms that Labour argued for. Instead, the new reform money has been allocated largely to propping up the existing social care system. What action are the Government taking to tackle the staggering care costs faced by individuals with dementia in the absence of the care cap implementation? Can we please be updated on the Government’s plans for social care charging reform?

Thirdly, on NHS continuing care, the excellent Lords Library briefing reminds us of the CHC’s ill-defined primary health need assessment criteria and the huge inequities in the current system, particularly relating to the funding—or lack of funding—for care costs for dementia, either in the home or in care homes. The Alzheimer’s Society has pointed out that NHS England’s stats do not record diagnostic details, so there is no way of knowing how many people with dementia receive CHC or have been turned down. There is also no way of making assessments or comparisons from which transparent criteria could be developed. There are also huge geographical variations in the length of time taken to assess claims and handle appeals. Can the Minister update the House on what work is being undertaken to improve the transparency of CHC processes, procedures and decision-making, and also to address the urgent problem with assessing the eligibility for CHC of people with dementia?

Noble Lords’ priorities for dementia today have focused on urgent improvements to diagnostic rates, speeding up the introduction of vital modifying drugs to help slow down disease progression, investment in the dementia diagnostic infrastructure, and rebuilding the workforce and addressing the 152,000 vacancies in the adult social care workforce. This needs to be a fully comprehensive plan that is fully integrated with the NHS workforce plan if we are to avoid exacerbating the already chronic social care workforce crisis that we have.

I add my thanks to my noble friend Lady Browning not only for bringing this debate but for her commitment generally in this area. I also thank all noble Lords for their contributions. These sorts of debates are always a pleasure, and one thing I have learned in the almost 18 months that I have been involved in the Lords is that it does not matter what the subject is; you always find expertise and learn about colleagues’ experience, such as that of the noble Baronesses, Lady Greenfield and Lady Murphy. I always find having the power of that knowledge around the table a real asset for the Lords and a real contribution to these types of debates.

My noble friend Lady Browning quite rightly said in her introduction that the statistics are gobsmacking, if I can use that word. I note the fact about one in 11 of those over 65. The one that really resonated with me—noble Lords have heard me mention it many times—is the fact that 25% of our beds are occupied by people with dementia. There is a real feeling that not only is that not the right place for them but it is not a good use of money. I therefore totally agree with that sentiment.

We see virtual wards and hospices at home as part of the answer to this. I have seen some good technological advances: at the light end of the scale, for want of a better word, we could look at people’s electricity usage, for example, and start to learn their patterns. For a lot of people, there is a surge at 8 am when they put on the kettle, so if that surge suddenly is not there, that is an early warning that perhaps there should be a call because something is wrong. There are also motion detectors around the house to start to understand their patterns. To my mind there is a spectrum of those sorts of virtual wards from the very heavy intervention ones to just trying to make sure that people are generally fine and going about in their normal way or, if they are not, it can be an early warning.

I will come on to staffing, but a key part of that in the home is dom carers. It is a point that the noble Lord, Lord Allan, made well. We have made a lot of progress in what we are trying to do with career progression, but I want to be assured that we have really got this area right.

My noble friend Lady Browning mentioned the fundamental need for a care plan in all that. In preparing for this, my noble friend Lord Evans said that that was what he needed in his recent situation with his mother. That is what ICSs should be starting to do now. I take the point made by the noble Lord, Lord Allan, that there is probably no better example of trying to learn how they are working than using this as a case study. My general experience of ICSs—of course it is early days, even now I think we are only 18 months or so in—is that, as ever with these things, there are some very good examples and probably some which need to do a bit more work. I am quite happy to take that away to try to find some test cases that we can try to learn from. The NHS has set out best practice guidance that it expects all ICSs to follow. My understanding, which I will check on, is that part of that is having a dementia lead, which my noble friend Lady Browning mentioned.

As the noble Baronesses, Lady Ritchie and Lady Donaghy, and other noble Lords mentioned, diagnosis is key. The target is two-thirds. We are getting quite close to that, but we have been behind, so there has been an investment of £17 million to catch up. I accept the point about whether two-thirds is enough and whether we would accept that in other areas and let one-third go undiagnosed, but step one is making sure that we hit that two-thirds.

The noble Baroness, Lady Ritchie, asked what sort of resource we are putting behind this. CDCs already have the equipment, in terms of scanners, and the ability to do that, but I accept the point made by the noble Baroness, Lady Murphy, that it is probably more about the people. It is less the equipment than making sure that people are trained to do that. I will come on to staffing later, but I take that basic point.

What is the point of diagnosis? First, it is to make sure that people get the right care. Secondly, it is so that we can start to deploy some of these new treatments. Again, it is great to have the expertise of the noble Baroness, Lady Greenfield. In answer to the question from the noble Baroness, Lady Ritchie, we are expecting NICE approval of the drugs to slow dementia down in early summer, and we expect to then roll that out during the summer period. However, we all know that they are only on the nursery slopes, and that is why there is a commitment to research of £160 million per year.

To fuel the moon shot, I am really excited about the power of the data that we own. I was recently on a fact-finding mission to Boston and they were talking about a major $250 million investment that a private venture group had made into the 9 million hospital records in Mayo Clinic. They were saying, “You don’t realise what you have in the UK. You have 50 million records in England, and you have primary care as well”. The whole problem around dementia is that we do not know what we are trying to tackle, in terms of the early causes. The reason we were so good at tackling Covid was that we knew exactly what we were going after. Right now, in things such as dementia and Alzheimer’s disease, it is still a case of shots in the dark.

However, regarding the 50 million records we have, if we look at people who have dementia today, wind back 15 years and ask what they were visiting their GP about then, and throw that all at AI, we can get some of those early-warning indicators. I know some of the anecdotal ones. For instance, as mentioned, urinary tract infections are often an early indicator of dementia because people do not understand that they are there. Throwing all that at AI and making sure that that data exists is a real way to fuel the moon shot so that we know where we should be putting our research efforts to try to find treatments.

On the funding of social care, as I said, the £8.1 billion investment over two years is a major investment. I learned a lot from my noble friend Lady Berridge. I did not realise that being committed under the Mental Health Act is a main way to get there. On the question from the noble Baroness, Lady Wheeler, about CHC transparency, I do not know the answer off the top of my head, but I will come back on that because it is a good point. As ever, I will try to come back and cover it more fully in writing.

The reform plans that we have announced are about making sure that we have the proper staffing to do this. As I mentioned in answer to the earlier Question today, we are starting to turn a corner, although it is early days. On career progression and training, I believe that what we announced last week is a key part of making this a real profession that people will want to stay and progress in. I agree with the point made by the noble Lord, Lord Allan, that paid progression has to come along with those qualifications; otherwise, you will not get people wanting to enter it.

I understand, as a few noble Lords have mentioned, including the noble Baronesses, Lady Wheeler and Lady Pitkeathley, that the role of the carer is vital and often overlooked. As noble Lords know, I have had personal experience of that as a carer. Quite honestly, all I can say is that we are making some early steps in trying to get some of the funding, but I freely accept, from personal experience, that there is a lot more that could be done in that space.

I have tried to give a flavour—before my throat totally gives way—of what we are trying to do in this area. As ever, I will respond fully in writing, but I hope there is an understanding from the Government’s side, as echoed by all noble Lords, that this is something we do take seriously.

I am sorry to test the Minister’s vocal cords, but he mentioned that there was good practice guidance issued to ICSs. My experience as a Minister is that the department is extremely good at sending out guidance but extremely bad at checking whether anyone ever follows it. What arrangements has the department got to see if that good practice guidance is put into operation?

The noble Lord makes a very good point, and it is one I have some personal experience of as well. The hope, when setting up 42 ICSs, was that this would be the right size for them to pool resources and take a holistic view, and that 42—while still a lot— would be a manageable number. As Ministers, we have divided those up into seven each that we can get to know, and live and breathe and understand; we also have dashboards that we can use to monitor progress in these areas. That is the way we plan to do that. I freely admit, again, that it is early days; I accept the noble Lord’s point that you can give out guidance until you are blue in the face—and they will receive a lot—but it is the follow-up that really matters.

I thank the noble Baroness again for the debate. I hope there is a feeling that we understand and that we are trying to give the parity of esteem that this deserves, and I look forward to following up more thoroughly in writing.

Committee adjourned at 4.56 pm.