Inequalities in Dementia Services — [Christina Rees in the Chair]

Backbench Business – in Westminster Hall at 12:30 pm on 16 May 2024.

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Photo of Debbie Abrahams Debbie Abrahams Labour, Oldham East and Saddleworth 12:30, 16 May 2024

I beg to move,

That this House
has considered inequalities in dementia services.

It is a pleasure to serve under your chairship, Ms Rees. I thank the Backbench Business Committee for granting me this debate to discuss the huge inequalities in dementia diagnosis and other services across the country. I also thank the Alzheimer’s Society for providing the secretariat to the all-party parliamentary group on dementia and for supporting our many inquiries, including the inquiry we conducted into dementia diagnosis last week, which was published in our “Raising the Barriers” report. My particular thanks go to Lewis and Connor for their briefings and for helping me to prepare for this debate.

It is a real honour to have recently been re-elected as co-chair of the all-party parliamentary group on dementia, a position that I have held since 2015. My other co-chair is Baroness Angela Browning, and like Angela I became involved in the APPG because I became a carer of a loved one who developed one of the brain diseases that cause dementia. In my case it was my mum, who was also called Angela. She was diagnosed with Alzheimer’s disease in 2002, when she was just 64, and I cared for her along with my stepfather and brother. After she died in 2012, I became the first MP to train as a Dementia Friends champion and was subsequently elected as co-chair of the APPG on dementia in 2015.

This debate could not be more timely. As you know, Ms Rees, this week marks Dementia Action Week. Yesterday I had the pleasure of sponsoring the Alzheimer’s Society’s reception in Parliament for Dementia Action Week, where we welcomed many Members to hear about the importance of a dementia diagnosis and the transformative potential of new treatments for dementia. Back in January, I spoke in another Westminster Hall debate looking at the advent of new treatments, particularly lecanemab and donanemab. Those drugs have caused huge excitement, as they mark the first ever treatments for people in the early stages of Alzheimer’s disease and could change the way that we see dementia forever. However, even in that debate I highlighted the barriers to those drugs being delivered to patients and sounded a note of caution that they are neither a cure nor a quick fix. I was really reassured that the approval of lecanemab and donanemab is going through the regulatory cycle at the moment, and we hope to hear when they will be available in the next couple of months.

The fact of the matter is that dementia is a monumental pressure on our health and social care system, but it is all too often an afterthought in commissioning. It is not commonly known that dementia is the leading cause of death in the UK. Nearly 1 million people have dementia, but of those one in three currently live without a diagnosis. Dementia costs the economy more than £40 billion each year, and more than 60% of that cost is borne by individuals and families. Those facts may come as a surprise to many, including many commissioners, but I will focus today on two important inequalities in dementia: the inequality in dementia diagnosis rates between different parts of the country and different groups of people, and the inequality between those who do and do not have access to post-diagnostic support.

First, I will share some information that hon. Members will hopefully find useful. When we talk about dementia, we are using a collective term covering the common symptoms associated with a range of brain diseases. Alzheimer’s disease is the most common of those, but they also include vascular dementia, which my mother-in-law had, Lewy bodies, frontotemporal dementia and many others. Each of those brain diseases has different pathology and as a consequence will have different therapies.

Right now, more than 900,000 people live with dementia in the UK, as I mentioned. Due to our ageing population, that figure is set to rise to 1.6 million by 2040, but I need to stress that dementia is not an automatic part of ageing, although it is more prevalent in older populations. People with dementia account for more than 70% of the residential care home population over the age of 65 and 60% of people receiving home care. Meanwhile, as revealed by NHS performance data published earlier this year, it is estimated that a quarter of NHS beds are occupied by people with dementia. They remain in hospital on average twice as long as people who do not live with the condition. Unfortunately, that reflects the crisis in our social care system and not being able to safely discharge people back into the community or to residential care.

I reflect on where we are in relation to our social care system and the opportunities that we have had, for example through the Dilnot proposals back in 2015, and I really do hope that focused the minds of all of us in what we do. I certainly will be supporting, and have for many years been supportive of, a national care service.

Diagnosis is the key that unlocks vital care and support for people living with dementia, particularly those who are struggling to manage their symptoms alone. It helps people to understand their condition. It allows them and their loved ones to start planning for the future but, as I mentioned earlier, currently just one in three people estimated to have dementia receive a formal diagnosis. The benefits to receiving a diagnosis are massive—access to new treatments and to the care and support that is needed. Alzheimer’s Society reported earlier this week that 91% of people with a dementia diagnosis saw real benefits to having received one. However, the dementia diagnosis rate in England dropped from 67.6% to 61% during the covid pandemic. Currently it is 64.8% in England—below the national target of two thirds.

Photo of Andrew Gwynne Andrew Gwynne Shadow Minister (Social Care)

I am very grateful to my hon. Friend for giving way and I commend her, not only for securing this debate but for the powerful work she does in this area of policy. She raises the national target for two thirds of people with dementia to be diagnosed. That is not nearly ambitious enough. Is she also concerned that there are huge variances across the country? How can it be that a place like Stoke can get 90% diagnosis and a place like Swindon 50%?

Photo of Debbie Abrahams Debbie Abrahams Labour, Oldham East and Saddleworth

I am very grateful to my hon. Friend for his intervention. This is the absolute crux of the issues we are facing. First of all the target is not ambitious enough, but as he rightly says there are these inequalities. I prefer calling a spade a spade, so these are inequalities and we need to call them what they are. Although the national picture is poor, if we dig further into the data we can see that there is a huge regional inequality in dementia diagnosis rates. In my Oldham constituency, for example, the rate is above 75% and in Devon it is just 40%. Where you live has a massive impact on whether you get a timely, accurate and high-quality dementia diagnosis. A postcode lottery on this scale for a condition that will affect one in three of us is not acceptable.

The APPG’s dementia diagnosis inquiry revealed several issues. There are significant differences in the dementia diagnosis rates between integrated care system areas in England. The report referred to a recent Alzheimer’s Society survey of clinicians, clinical commissioning groups—the predecessors of the ICSs—and dementia support workers. Poverty and health inequalities were identified as major barriers to getting a dementia diagnosis. This was also borne out by analysis by the Office for Health Improvement and Disparities. I have to say I do not particularly like the title of that organisation; I think it should be the “Office of Health Improvement and Inequalities”.

Similarly, there were lower rates of diagnosis in ethnic minority populations. For example, the City of Wolverhampton has an overall diagnosis rate of 70%, but just 35% for people from an ethnic minority community.

Alzheimer’s Research UK also undertook an analysis and published a report last October—“Towards Brain Health Equity: Tackling Inequalities in Dementia Risk”—and this highlighted research identifying vulnerable groups and the dementia risk that they face. That is also an inequality. It referred to research in England and Wales that showed that socioeconomic deprivation and ethnicity are linked to increased dementia mortality, younger age at death from dementia and poorer access to specialist diagnostics. A number of recommendations were made around that. We know that there are 12 modifiable risk factors associated with dementia, and the report focused on action around reducing air pollution, lowering smoking rates, healthy eating, tackling higher blood pressure and identifying and treating hearing loss.

Returning to our APPG inquiry, we received input from more than 2,300 people and I thank them sincerely. Those people have gone through—either themselves or with a loved one—a dementia diagnosis process. They shared their experiences in our survey and we found that every part of the country produced different experiences of the diagnosis system. In Somerset, for example, people were most likely to report that they were satisfied with the time it took for them to receive a diagnosis but were least likely to say that they received satisfactory post-diagnostic support. In London, respondents had the best access to brain scans but found it most difficult to access GP appointments. I know that £17 million was invested in dementia diagnosis by the Government in 2021-22 and that part of that money was to develop best practice advice.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

I commend the hon. Lady for calling this debate and for her work through the APPG. I say to her, and to the Minister, that today we are seeing more people being diagnosed with dementia and dying than is the case with other conditions, such as heart disease and cancer. Why does the hon. Lady think we are not investing more resources in research and support for people who suffer from this terrible condition?

Photo of Debbie Abrahams Debbie Abrahams Labour, Oldham East and Saddleworth

The hon. Member is absolutely right; there is less money going into research. On why there is not more done about it, the hon. Member really needs to direct that question to the Minister. I have set out all the evidence that says it should be a priority for the families and individuals affected and a priority for our society, and it should also reflect how we organise our care system, given that predominantly the people in the care system are those living with a diagnosis. The hon. Member will therefore have to direct that question to the Minister.

Going back to my point about the investment made in 2021-22, can the Minister update us on how that is going and the improvements that she may not see immediately but which she hopes to see? Clearly, that is something we need to see as part of the levelling-up agenda.

As I said before, 2,300 people filled out our online survey and shared their stories to inform our work. Sadly, just 5% of people’s stories were positive. Five per cent: that is awful, is it not? After a constituent came to see me regarding concerns about the delay for her mother’s diagnosis—it took her 15 weeks to get an appointment for her mother to attend for a dementia diagnosis, during which time she noticed a considerable decline in her cognitive health—I tabled some written questions on the proportion of people waiting more than 15 weeks for an initial dementia diagnosis and the average waiting time for an assessment. I was told in response on 22 January 2024 that those data were “not held centrally”. I find that extraordinary. National strategies should not just reflect the evidence and data for a national profile around dementia, so we should agree that that needs to change.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

My constituency is in the London borough of Havering, with the second highest number of older people in the whole of Greater London. At the moment, on average it takes over 16 weeks to get a diagnosis. Of course, the quicker the diagnosis the better, so it is important that we reduce the length of time that people have to wait to know the condition they are suffering from. Consequently, I fully support the hon. Lady in urging the Government to make earlier diagnosis a greater priority.

Photo of Debbie Abrahams Debbie Abrahams Labour, Oldham East and Saddleworth

I am very grateful to the hon. Member for that intervention, and I absolutely agree.

All of that underlines the importance of improving the dementia diagnosis pathway and making it work better for people living with dementia and their loved ones. The APPG has developed a series of recommendations across the core themes of dementia diagnosis, data, workforce, and public health messaging. Collectively, these recommendations outline how dementia pathways can be strengthened to enable access and quality care across all settings, communities and regions in England. I would be grateful if the Minister could say what work the Department is undertaking in those areas to reduce inequalities in the experience of dementia between localities and population groups.

I turn now to the inequality between those who have post-diagnostic support for dementia and those who do not—or, perhaps more insidiously, the gap between what people with dementia are supposed to receive and what they actually receive. Guidance states that people living with dementia should be offered a review with a healthcare professional at least once a year. However, just 25% of people with dementia who were polled by the Alzheimer’s Society said that they or their loved one had had an annual dementia review within the last 12 months, and only 16% said that they had received enough support from local services in the last 12 months. In addition, more than half said that, even if they had received an annual dementia review, it did not help them feel more able to manage their condition.

This trend continues outside primary care and in allied health professions. Over half of people with dementia who have been signposted to mental health services report having to wait up to a year for treatment. Evidence shows that mental health treatments can be effective in treating depression and anxiety symptoms associated with dementia, but just 0.002% of referrals to NHS talking therapies are for people with dementia—that is 2,000 people out of 1 million referrals.

A quarter of people with dementia wait for up to a year for occupational therapy after referral. Occupational therapy can help people to avoid dangerous falls and to live well in their own home for as long as possible. The average time spent in hospital for a hip fracture is seven days, but patients with dementia stay in hospital for up to four times longer a hip fracture. The additional cost—I know it should not be just about cost, but there is an associated cost—is almost £6,000 per patient, which is far more than the cost of an occupational therapy appointment. I have to say that I just do not get why we are prioritising things in this way.

I do not want to reduce health and social care decisions purely to finance, but the fact of the matter is that early intervention for people with dementia saves so much money. The Alzheimer’s Society reported on Monday that the cost of dementia to the UK economy is £42 billion a year, and that figure will skyrocket to £90 billion by 2040 because of our ageing population. The cost of dementia rises significantly as the condition progresses. The average cost of care for someone in the early, or milder, stages of dementia is about £28,000 a year; in the later, severe stages of dementia, it rises to well over £80,000 a year. Caring well for people with mild dementia can prevent falls and infections, which cause unnecessary hospitalisations and deconditioning, which increase the speed of deterioration in people with dementia. Early identification and increased spend in the early stages of dementia pay dividends further down the pathway.

I would like to end by putting three questions to the Minister, and I would be grateful if she could address them in her response or in writing at a later date, if that is easier for her. First, what will the Department do to ensure that where someone lives, their socioeconomic status or their ethnicity do not negatively affect their likelihood of getting a dementia diagnosis? Secondly, what will the Department do to ensure that everyone with dementia has access to high-quality, post-diagnostic care, regardless of where they live? Thirdly, it was two years ago this week that Sir Sajid Javid announced a 10-year plan for dementia, which was then folded into the major conditions strategy. However, we still do not know when that strategy will be published. Can the Minister update us on when we can expect publication of the strategy?

Dementia is a monumental health and social care challenge, and will be the defining test of our system in the decades to come—I have absolutely no doubt of that. We have spoken in this place about planning for the next generation of dementia care in the context of the new, potentially transformative drugs that are currently under appraisal, but almost 1 million people are living with dementia in this country today, and much more can be done to get them the care and support they need and deserve at the earliest possible moment.

I would like to thank the Backbench Business Committee and those who have joined us on a Thursday afternoon when a lot is going on in Parliament. I look forward to the Minister’s response.

Photo of Christina Rees Christina Rees Independent, Neath

May I remind Members that they should bob if they wish to be called to speak?

Photo of Holly Lynch Holly Lynch Opposition Deputy Chief Whip (Commons) 12:50, 16 May 2024

It is always a pleasure to see you in the Chair, Ms Rees, so thank you for being here this afternoon. I pay tribute to my hon. Friend Debbie Abrahams. In preparation for today’s debate, I looked back in Hansard at previous contributions I had made in debates on dementia, and I was struck by the fact that every single one started the same way: by paying tribute to her. On every occasion I have spoken about dementia, it has been in a debate secured by her, and every time I have attended an event on dementia or Alzheimer’s, it has been hosted by her. She trained me in a workshop back in 2016 to be a dementia friend, and she is the most incredible advocate on behalf of all those living with dementia, and their carers and families. I really do, with all sincerity, pay tribute to her for the incredible work she has done on this cause.

We are blessed across Calderdale with some truly brilliant people and volunteers who work tirelessly to improve the lives of those living with dementia, their carers and their loved ones, and I will pay tribute to them later in my remarks. At a recent event at Halifax town hall, I was asked to host a Q&A with Scott Mitchell, who was married to the wonderful Barbara Windsor for 20 years before she passed away—six years after receiving a dementia diagnosis. Scott is one of the most incredible advocates for those with dementia, and it has been a pleasure to get to know him better following that event.

There are not many things Boris Johnson really got right in his time in office, but credit to him for setting up the Dame Barbara Windsor dementia mission, which launched in August 2022. I was so pleased that Scott was officially appointed the people’s champion for the dementia mission in March this year. Scott recently introduced both myself and the shadow Secretary of State for Health, my hon. Friend Wes Streeting, to the co-chair of the mission, Hilary Evans of Alzheimer’s Research UK. I am delighted to say that no one was left in any doubt that we 100% support the mission, and will very much do so if we have the opportunity and privilege to be in government in the not-too-distant future.

The work of the mission really matters. As my hon. Friend the Member for Oldham East and Saddleworth has outlined, the numbers on dementia are nothing short of terrifying. Nearly 1 million people are living with dementia in the UK; with an ageing population, that is set to increase to 1.7 million by 2040. That means that one in two of us will be affected by dementia in our lifetime, either because we will care for someone with the condition, develop it ourselves, or both. Sadly, dementia is the UK’s biggest killer, accounting for more than one in 10 deaths. Nearly 75,000 people died from dementia in 2022, which is an increase of 5,000 from 2021. Shockingly, those numbers will be us: one in two of us in this room will be affected. It is enough to make you want to throw the whole kitchen—never mind the kitchen sink—at finding treatments and solutions as part of early and effective diagnosis and treatment pathways.

I am grateful to the Alzheimer’s Society, which was in Parliament yesterday at an event hosted—again—by my hon. Friend. It told me that the diagnosis rate for those living with dementia in Halifax is 66.1%, so around a third of those living with dementia do so without a diagnosis, which could unlock care and support.

It is in everybody’s interest to get this right. My hon. Friend talked about the fact that, while we do not want to reduce decisions about people’s wellbeing and their health and social care to facts and figures on finances, it is clearly nonsensical not to get a grip on this issue, because that would both deliver economic benefits and potentially transform people’s lives. Dementia has a huge impact on our economy and is costing the UK £25 billion every year—I think my hon. Friend actually had a higher estimate. However, Alzheimer’s Research UK is keen to stress that investment in research also has economic benefits, and every £1 invested in dementia research generates £2.59 in the UK economy.

The Alzheimer’s Society’s recent report on post-diagnostic support for dementia, “Left to Cope Alone”, engaged with over 2,000 people affected by dementia. Just 25% said they or their loved one had had an annual dementia review within the last 12 months. Only 16% said they had received enough support from local services in the last 12 months, which, I am sorry to say, reflects the experiences of too many families I have spoken to. It has to be said that investing in the NHS workforce, in diagnostics and in research and treatments will pay dividends. There is reason to be hopeful about the progress being made and the breakthroughs under way, as my hon. Friend touched on, but now is the time to redouble our efforts, not to take our foot off the gas.

At a local level, we have some brilliant people in Calderdale who have dedicated a great deal of time, going over and above, to provide care and support for those living with dementia and their families. I pay tribute to Chris and June Harvey, who run the wonderful Memory Lane Café for people with dementia and their carers. Chris and June have been instrumental not only in running pop-up cafés in churches and community centres in Sowerby Bridge and Halifax, but in setting up and delivering campaigns to make Sowerby Bridge and Halifax as dementia-friendly as possible. Alongside Shabir Hussain of Bluebird Care, they have hosted events bringing together organisations and local residents to achieve that aim, and have engaged directly with businesses to urge them to consider all the ways in which those living with dementia, and their carers, can feel supported in shops in the town centre.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

It is absolutely wonderful to hear about the work being done in Halifax. So much of that work in our own constituencies depends on voluntary support and voluntary organisations. I visited the Dementia Music and Social Club at the United Reformed Church opposite my office in Romford. Every Wednesday, that wonderful organisation brings together lots of people from all over Havering who are suffering with dementia; their friends and family go with them, and it is a very happy, fun afternoon. But the club gets no support, and they have to raise all their own funds—they get nothing from the local authority, the Government or any other funding streams. Does the hon. Lady agree that we need to do more to support local voluntary efforts? People need support; they need family and friends around them. Bringing together people who have the same condition is a light in their lives and gives back purpose. It is so important that we do more to support local communities to support people who are suffering with dementia.

Photo of Holly Lynch Holly Lynch Opposition Deputy Chief Whip (Commons)

The hon. Member is absolutely right. We have got into the real substance of the inconsistencies and the variations in rates of diagnosis. That really does highlight the inequalities that exist, depending on where someone is in the country. Beyond that, there is a real mix: there are so many local volunteers and brilliant groups that do so much good work, but that is not replicated evenly across the country. The hon. Member is quite right that the difference that some of the groups he mentioned make is transformative and a lifeline, not only for those living with dementia but for their families and carers—especially if those pop-up cafés and services are anything like the Memory Lane Café in Sowerby Bridge. He speaks of what great places they are to visit and be a part of. There is not that sadness; there is a shared sense of supporting each other, with lots of activities and lots of fun being had as well. That makes a really big difference to people’s lives, and the hon. Member is quite right that, with a little local authority and Government support, that could be replicated and enhanced and more people could be supported. The hon. Member makes a really important point.

In addition to the Memory Lane Café, we have a young-onset dementia and Alzheimer’s group set up by Julie Hayden, which provides support for younger people with dementia and for their carers. I know that is very much valued, especially by those of working age who have been diagnosed with dementia or Alzheimer’s really quite early in life. I also pay tribute to Inspector Neil Taylor of West Yorkshire police, who is the chair of Dementia Friendly Todmorden and a Dementia Friends ambassador. He has worked so hard to promote best practice within West Yorkshire police, establishing the Herbert protocol, whereby the police and other agencies encourage families and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The protocol takes its name from George Herbert—a veteran of the Normandy landings who lived with dementia. I am grateful to those people and to the others who make such a big difference. As we have said, they are all volunteers— they are unpaid—and that speaks to the very point of the debate.

The provision of services is still uneven, and families and individuals who need to make use of services will find that that provision can vary significantly. They are local heroes and I am so grateful for all that they do. I look forward to the Minister’s response and, once again, I thank my hon. Friend the Member for Oldham East and Saddleworth not only for securing this debate but for all that she does.

Photo of Andrew Gwynne Andrew Gwynne Shadow Minister (Social Care) 1:02, 16 May 2024

It is a pleasure to serve under your chairmanship, Ms Rees. I yet again commend my hon. Friend Debbie Abrahams for securing this debate and for her ongoing advocacy on the issue. I also thank the other hon. Members here; we are a small but perfectly formed debate.

I particularly thank my hon. Friend Holly Lynch for her important contribution. She is absolutely right to champion not only the important services being provided in her patch and across the country, but that desire to want better and to want more so that no person or family looking after somebody with dementia is left behind. That wraparound support is absolutely crucial. I also commend her and my hon. Friend the Member for Oldham East and Saddleworth on thanking those national and local organisations and charities, and the wonderful army of volunteers who keep dementia on the public policy platform.

I thank Andrew Rosindell for his important interventions. It is absolutely right that we have to approach how we deal with dementia in the 21st century on a cross-party basis. I hope that we can reach some consensus on what needs to be done, because never has the need for a clear, concerted focus on dementia been more pressing. It is one of the biggest health and social care issues facing our society. As my hon. Friend the Member for Oldham East and Saddleworth pointed out, almost 1 million people in the United Kingdom live with dementia—a figure that is expected to rise to 1.4 million by 2040.

Behind those numbers lie individual people with their own distinct circumstances and challenges and their own unique stories of living with dementia. It is a cruel condition that strips people of their fondest memories and causes devastation for families.

Dementia can impact anyone at any time. It is indiscriminate in the impact it can have, but we know that certain groups are at increased risk. We know that women are more likely to develop dementia than men. They are also more likely to be caring for a loved one living with dementia. We know that those from poorer and disadvantaged backgrounds are more susceptible to key dementia risk factors, with often limited access to health services.

My hon. Friend the Member for Oldham East and Saddleworth is absolutely right to refer to these conditions as health inequalities, because it is often those living in the poorest, most adverse circumstances who face the hardest challenges, not just with this condition, but with a whole number of conditions. If we want to live in a better, fairer, more equal society, we have a duty to bear down on those inequalities. I completely agree with my hon. Friend about referring to such conditions as health inequalities. People from ethnic minority backgrounds are also at higher risk, as are those with conditions such as Down’s syndrome, but the population living with dementia is expanding all the time; it is not restricted to any single group, and we must be ready to tackle the challenges that presents head on.

Nowhere is that challenge clearer than in adult social care. Around 60% of people drawing on home-based care and support services live with dementia, rising to 70% for those in residential care. We need long-term solutions that reshape social care into a service that is fit for the future and fit for the challenges of the future. That is why I am proud of Labour’s commitment to a 10-year plan for fundamental reform of adult social care, culminating in the creation of a national care service.

The NCS will employ robust central frameworks and standards, but it will be underpinned by locally led delivery. Every community will have its own unique set of needs, face unique challenges and require unique solutions. One of our aims will be to gradually reduce the postcode lottery that operates within social care that causes people living with dementia and their families so much distress. However, a reformed and reshaped social care sector alone cannot and will not meet the needs of an ever-growing population of people living with dementia.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

I am very interested in some of the hon. Member’s comments. I am glad that he approaches the issue from a cross-party point of view. In my own borough of Havering, there are a vast number of older people. So many services for people who suffer with dementia depend on local authorities. In Havering, we do not get the additional funding we need to deal with the older population who need those services. If there were to be a change of Government, would he commit to helping boroughs like Havering by giving them more resources? Will that boroughs with large populations of older people who suffer with dementia get more support from the Government that the hon. Member may well serve in?

Photo of Andrew Gwynne Andrew Gwynne Shadow Minister (Social Care)

I would certainly hope and expect so. The way we are going to deal with the national care service is not to create a big, monolithic organisation to rival the NHS as some kind of super-organisation employing lots of people. The NCS will be about the centre setting out a clear national direction of how we deal with the challenges of social care: what the pay, terms and conditions of the workforce should be, and what the outcomes should be for people drawing on social care services. That strong centre sets out the “what”. The “how” has to be determined locally, because what works in Oldham will not work in Romford. There will be best practice in Oldham, which will transfer over and can be upscaled to Halifax, Lewes or Romford. That is also a job of the centre—to promote that best practice and what works, encouraging other authorities to do that—but the funding challenges require an integrated approach, and I saw at first hand how that could work in my own local authority.

For a very small period of time, now unpicked by the latest round of structural changes, Tameside council was also the clinical commissioning group for Tameside and Glossop. By bringing the local authority and the CCG together under a single leadership with a single budget, some really smart decisions were made on dealing with adult social care. I know what integration looks like, I know it works, and I know how we can get better use of the public pound, by stripping out some of the duplication.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

I am very pleased by what the hon. Gentleman is saying, but have just a small point of clarification. There should be common cause over this issue, but does he agree that the important thing is that the funding follows the individual? It should not matter which part of the country someone lives in or if they are on a certain side of the boundary of a borough. My borough is within Greater London, and we get very poor funding because all the money goes into the centre for all sorts of local services, and Essex County Council is just up the road, so we always get caught. Can the hon. Gentleman assure me that in any policies he may bring forward, the money will go directly to the needs of the individual, rather than one person on one side of a boundary getting the funding, while a mile down the road they do not get the support they need?

Photo of Andrew Gwynne Andrew Gwynne Shadow Minister (Social Care)

That is why we need to have a strong national framework with an expectation that these services are delivered to the required outcomes, with very strong targets across the whole of England. I get the nuance between local government finance and the interrelationship with adult social care and NHS budgets. We have to be smarter at working around all of this. As a former shadow Secretary of State for Communities and Local Government, I realise that this is not a debate on local government finance, but the two are interrelated. I take on board the point made by the hon. Member for Romford.

In order to get this reformed, reshaped social care sector, and particularly within the scope of there being an ever-growing population of people living with dementia, we need to fix the crisis in our NHS, which is intrinsically linked with our social care system, to address the inequalities in dementia care. As we have already heard, that care starts with timely and accurate diagnosis. A third of those currently living with dementia in the UK do not have a diagnosis, and that prevents them from accessing the vital care, support and treatment they need.

This is also about allowing people to have some degree of certainty and to make different life choices based on that. If I found out that I had early-onset dementia, I could hopefully access some of these new drugs available. In doing so, I would very much hope that I could tick off a few more things on my bucket list. I might want to spend more time with my family and take them on a chance-of-a-lifetime holiday, making memories. People are deprived of making those choices. I do not think it is good enough to have a third of people left undiagnosed. That is the national target being met, and as we have heard, in large parts of the country it is not being met.

I want us to get to a much more rigorous national target. If Stoke can diagnose 90% of people with dementia, so can the rest of the country because Stoke is not a rich area or a well-sourced local authority. Its NHS is not awash with any more cash than other areas of the country; if they can get 90%, so can the rest of the country, with concerted effort. That is why having a strong central target, and an emphasis from the Minister to make that a priority, is going to be important. It will be the priority of the next Labour Government to increase that target and demand that local systems not only meet but exceed it, because this is people’s lives that we are talking about.

As we know, earlier diagnosis means better care and outcomes—it could not be simpler. The national target of two thirds is not good enough. I am not content that a third of people, and even more in many areas failing to meet the target, are living with dementia and going without vital care. With primary care under such immense strain, people simply cannot get through the front door. That is why the next Labour Government will be committed to making the future of general practice sustainable, and to taking pressure off those currently working in the system. We will bolster the workforce so that all patients, including those with dementia, can get timely care. That is why Labour will deliver on the NHS long- term workforce plan to train the staff the NHS needs, now and in the future.

Once a diagnosis has been made, continuity and ease of access to care is crucial to long-term outcomes. That is why one of the fundamental shifts that the next Labour Government will deliver in our health and care system is taking focus of care out of hospitals and into the community. Unlike the last time that was done, principally for people with dementia and learning disabilities, the money has to flow from hospital to community as well, which scandalously did not previously happen.

Labour will work with the NHS and social care providers to bring services together in local communities. It is by having those services embedded where people are that we will deliver another crucial shift to a health and care service relentlessly focused on prevention. Alzheimer’s Society research shows us that mild dementia costs £29,000 per person per year, compared to £81,000 for severe dementia. That provides proof, if ever we needed it, that the case for focused prevention is clear for not just patient outcomes but the financial sustainability of services.

As well as looking at the here and now, we must also look at the challenges on the horizon. Our understanding of dementia is constantly evolving. That is why continued leadership in research and embracing the latest technological advances and developments are so vital to ensuring we stay ahead of the game. Labour is committed to putting Britain at the front of the queue for new treatments by boosting clinical trial activity in the NHS. We will speed up recruitment to trials, and give more people the chance to participate. We will link clinical trial registries to create a national standing registry and harness the power of the NHS app to invite eligible participants to take part in research studies.

I pay tribute to a group that is so vital but yet so often forgotten: unpaid carers. Hundreds of thousands of people care selflessly for their loved ones living with dementia. Make no mistake: without the work of unpaid carers the system would simply collapse. With 63% of the total cost of dementia being borne by those living with the condition and their families, we know just how raw a deal they are getting. They are a vital part of the fight against dementia, and they will be at the heart of Labour’s plans in Government.

There will be a carers strategy under the next Labour Government, because we value the vital work our carers do. It will be a cross-Government strategy with the Department for Work and Pensions, Department for Education and the future of work review all feeding into it along with the Department of Health and Social Care. There is a brighter future for those living with dementia and their families and carers. Labour will deliver it.

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women) 1:19, 16 May 2024

It is a pleasure to serve under your chairmanship, Ms Rees. I thank Debbie Abrahams for securing this debate and for her collaborative work on the issue, which brings everyone together. She is right to point out that dementia is not an automatic part of ageing—there is still a stereotype that does not recognise that—but early onset dementia is also an issue. Young people with dementia often struggle to get the help and support they need because it is seen as a disease of old age.

It was incredible to hear the hon. Lady describe her own experience of caring for her mother, Angela, which must have been so difficult. I think most of us have been affected by dementia in some way. My mother-in-law died from dementia last year. It is just terrible seeing people we know and love change in often such a dramatic way. Even with the best care and support available in the world, it is still difficult.

Holly Lynch talked about her good experience with local services and the importance of dementia-friendly communities. She is absolutely right. My hon. Friend Andrew Rosindell contributed with his own experience, and spoke about the changes he would like to see to improve the care and experience of those who suffer with dementia.

The all-party parliamentary group on dementia does fantastic work. In her role as chair, the hon. Member for Oldham East and Saddleworth is doing groundbreaking work, particularly on reports and surveys to flag issues based on the experience of those who provide dementia services and look after loved ones. In Dementia Action Week, I thank everyone involved in supporting people with dementia, particularly unpaid carers, as the shadow Minister, Andrew Gwynne, said.

I want to reassure hon. Members that this Government are passionate about improving care, and we have a clear mission to make our NHS and social care system much more responsive to people’s needs. The hon. Member for Halifax pointed out the important work of the former Prime Minister, Boris Johnson, in setting up the Dame Barbara Windsor dementia mission. The previous Prime Minister, David Cameron, instigated a lot of research in this space as well.

I say this with my Minister for Women hat on: the leading cause of death among women is dementia. We also know that one in three people will be diagnosed with dementia in their lifetime, and that by 2040 1.6 million of us will be living with the condition, so it has to be a priority for diagnosis, treatment and support. I welcome the research this week from the Alzheimer’s Society, which highlights the economic impact of dementia and further outlines why it must be a priority.

The theme of today’s debate is the inequalities that exist across the country, and the wide variety of people’s experiences in getting a diagnosis and the support and care that they need. Yes, we can put more money and resources in, and I will outline some of the funding we are providing, but we also need a cultural shift. Although dementia is seen as a natural part of ageing, given diagnostic overshadowing other health conditions affecting people with dementia are often completely ignored because they are taken as part of the dementia diagnosis. When someone with dementia has a urinary tract infection, they will often be confused and agitated or even crying out in pain. It is seen as part of their dementia, when actually they could improve considerably with some simple antibiotics to treat that UTI. Sometimes we need to look at the culture around dementia across the system.

I want to highlight some of the work and research that we are already doing to look at diagnosis and treatment. I take the point made by the hon. Member for Oldham East and Saddleworth about the central database. Each ICB holds its own individual database, but I will go back to colleagues in the Department of Health and Social Care to see whether we can bring data together to look at disparities across the country.

Last year we announced our plan to publish a major conditions strategy. Dementia is one of the six conditions covered by the strategy, alongside cancer, cardiovascular disease and other major conditions. It is important that dementia is seen as a major condition and not just a part of ageing. Part of the work that we need to do is around the timely diagnosis of dementia, to ensure that anyone with dementia can access advice, information, care and support.

Our ambition is for two thirds of people living with dementia to receive a formal diagnosis. The shadow Minister probably knows what I am going to say. Absolutely —what he said sounds wonderful. However, Labour is in charge of healthcare in Wales and its ambition in the dementia action plan there is to increase diagnosis by 3% a year. We all want to see an increase in diagnosis rates, but we also need to be realistic and in some of the ambitions elsewhere that has not always been the case.

Photo of Andrew Gwynne Andrew Gwynne Shadow Minister (Social Care)

May I point out to the Minister that I seek to be the Social Care Minister for England, not Wales? As she is the current Social Care Minister for England, not Wales, can she please be a bit more ambitious for England?

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

I think it is ambitious for two thirds of people living with dementia to receive a formal diagnosis, because we are not there yet. We are putting some building blocks in place to improve things.

We know that the pandemic had a significant effect, because we shut down routine care for just over two years. It was very difficult then for someone to see their GP with concerns about potential symptoms of dementia, so the treatment of conditions such as dementia suffered as a result of lockdown. However, we are recovering diagnosis rates and a lot of work is going into that. Nevertheless, I absolutely recognise that some parts of the country have made a better recovery than others. Addressing that must be a focus of our work going forward.

NHS England has committed to recover dementia diagnosis rates to that national ambition and is providing clear guidance to integrated care boards, particularly where performance is not where we want it to be, to make sure that that happens. As part of the spending review in 2021-22, £17 million was allocated to the NHS to address dementia waiting lists and increase the number of diagnoses, which, as I say, was adversely impacted by the pandemic.

NHS England is funding an evidence-based improvement project for two trusts in each region, with 14 sites in total, to pilot the diagnosing advanced dementia mandate tool in order to improve diagnoses rates and so that people know what they should be doing when they are trying to get a diagnosis. That includes people in care homes and those who may not have relatives or friends to advocate on their behalf and help them to get a diagnosis in the first place.

We touched a little on research. I pay tribute to charity partners working with the National Institute for Health and Care Research, or NIHR, to try and find diagnostic tools to provide better diagnoses at an earlier stage, including things such as the blood biomarker and the blood biomarker challenge, which seeks to produce the clinical and economic data to make the case for a blood biomarker test in healthcare across the UK—so including our friends in Wales—to improve dementia diagnosis. That is how we will really find out who is at most risk and get them diagnosed earlier.

We are committed to supporting that research and will double funding for dementia research to £160 million a year by the end of this current financial year. That will be around not just diagnosis but treatment and other research elements. The Dame Barbara Windsor dementia mission is deeply embedded in that work and I thank it for its work in that regard.

I turn to the prevention of dementia. The NIHR is investing £9 million into the three schools dementia programme. There must be risk factors for dementia that we are unaware of at the moment and that vital research could be a game-changer in the future. The NIHR is also supporting the Promoting Independence in Dementia or PRIDE study, which aims to identify how social and lifestyle changes could reduce the risk of developing dementia at any stage of someone’s life—I was going to say “later in life”, but dementia can affect any age group.

That takes me on to treatments. Drugs are currently being appraised by the National Institute for Health and Care Excellence to determine whether they should be made available on the NHS. I know that many, many people are waiting for those appraisals and hope that they will be positive. We expect NICE to publish guidance in July and September respectively, and we want to make sure that if the decision is positive, we are able to provide fair and equitable access to any licensed and approved medication. We will hopefully hear very soon about that.

I want to touch on post-diagnostic support, which is a key part of people’s experience with dementia. Everyone should have access to meaningful care. I want to talk about the work of Admiral nurses, who do a tremendous job but are not available everywhere. It is down to individual ICBs to commission those services. The additional roles reimbursement scheme that is available to primary care networks and GP practices allows for enhanced nurses in dementia care to be employed. I encourage MPs to check with their ICBs, PCN and GPs to see whether that is something being used.

Admiral nurses do a fantastic job. It is not just about supporting people with dementia and their families. One critical area is continuing care applications. Very often people with dementia are turned down for continuing care, and Admiral nurses will often get those decisions overturned. I am not commenting on that, but they do have that experience. Sometimes dementia care may appear on the surface to be social care, but it actually is clinical nursing care, so that NHS/social care divide can be bridged.

Local authorities have a duty under the Care Act 2014 to provide or arrange services that meet the needs of the local population. My hon. Friend the Member for Romford talked about various conflicts between neighbouring local authorities. The reason we brought in integrated care boards was to bridge the gap between not only the NHS and social care but neighbouring local authorities. I encourage my hon. Friend to speak to his ICB to see whether they can do anything to better commission services for patients, so that it does not matter which edge of a borough someone lives in and to ensure that care is more joined up.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

What if someone’s local borough is on the edge of a region? Havering is on the edge of Greater London, and down the road is Essex. We would rather be Essex, to be honest, but we are stuck where we are. Are authorities able to work with local authorities beyond the boundary of their region?

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

ICBs should be looking at care in their local population. If there is an issue between regions and across borders, they should have informal conversations, even with a neighbouring ICB, to try to join up the dots. That is why they are called integrated care boards. They are there to integrate health and social care as well as geography in terms of logistical local authority boundary issues. If there is a significant issue across the boroughs on the Essex border, I would happily meet local MPs to discuss it, because we want joined-up dots and better-connected care. Good local relationships can improve local services. We will be publishing ratings of how well local authorities are delivering adult social care, and we will support them to improve their performance, so I am particularly interested in any geographical boundaries preventing that work.

Coming to the social care workforce, the social care setting is integral to supporting families, particularly unpaid carers. Our workforce must be equipped with the skills it needs. We have commissioned and funded the dementia training standards framework, developed in partnership with the sector. The framework sets out the required essential skills that we expect to be applicable across the health and care spectrum, and we expect social care to train its staff according to the framework.

We have also launched the care workforce pathway, which is the first ever national career structure for the adult social care workforce. That is really important as it will cover the complexity of conditions that social care workers now care for and give them a career pathway, so that their option is not just to work for a bit in social care and then go and do something better-paid. We want social care to have career progression and pay progression and help people stay in the job that people love. We have created a new care certificate qualification to end the current practice of care workers having to retrain every time they work for a new employer. Work is being done in this space. To echo the point made by the shadow Minister, the hon. Member for Denton and Reddish, about unpaid carers, we know that the vast majority of care is given by people who are looking after loved ones and friends, and they do an amazing job. Local authorities are required to undertake a carer’s assessment for any unpaid carer.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

I mentioned the Dementia Music and Social Club Romford. It meets at the United Reformed church and does a magnificent job. I hope the Minister would commend its work. It struggles because it does not have any direct funding. Would the Government consider having some kind of community chest to support local groups that are organised by volunteers and families of those who are suffering with dementia, so that they can have some funding for special events, day trips or social activities? That is so important, and they make the lives of those who are suffering with dementia so much better. They bring families and local people together to ensure that they have the best possible life with the condition that they are living with.

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

I absolutely recognise that. I will take away my hon. Friend’s suggestion, but I would say that integrated care boards can commission those sorts of services because, despite not being medical services as such, they provide a valuable service to those patients. Local GPs can also fund such activities through social prescribing. If someone goes to those events weekly or on a regular basis, social prescribing is there to help with exactly that sort of activity, because they are health and wellbeing activities, which make such a difference. I am very happy to follow up on my hon. Friend’s suggestion.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

I invite the Minister to visit the club. She would be very welcome, and she could see how effective the local group is in providing community support.

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

Absolutely. I am very happy to take my hon. Friend up on his offer. It is important to remind people of the funding avenues available, which are not always used. For example, social prescribing has funding attached to it, and it is important that we remember that. Funding pots must be sustainable. We often give one-off grants, as Government; they make a big difference, but they do not always lead to sustainable funding routes.

Photo of Andrew Rosindell Andrew Rosindell Conservative, Romford

Would the Minister write to Members with details of the funding streams available, so that we can disseminate them to groups in our constituencies?

Photo of Maria Caulfield Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care, Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

Absolutely. I am very happy to take that away as an action point.

I thank everyone for taking part in this debate. We recognise how difficult it can be for people diagnosed with dementia and their friends and family. We know that we have work to do on improving diagnosis rates. We are seeing improvements, but there is a lot more work to do. It is research and development that will really transform the way we manage dementia, find out who is at risk, diagnose them early and get treatments in place. There will be game changers, I am sure, over the next few years that will make a difference, but in the meantime we have to support people with dementia and their families better. I hope that I have demonstrated that the Government are absolutely supportive, and that we see this as a top priority. Once again, I thank all Members across this Chamber for taking part in the debate.

Photo of Debbie Abrahams Debbie Abrahams Labour, Oldham East and Saddleworth 1:38, 16 May 2024

I will be very quick because I know that people have trains to catch, but I want to reiterate the Minister’s thanks to everybody for taking part. This has been a particularly nice debate in its collaborative approach, and I thank her also for saying that she will follow up on the data and whether it could be retained centrally. I also hope that there is evidence that has been supplied here and elsewhere that will help to strengthen the dementia aspect of the major conditions strategy. We have not spoken about type-specific diagnoses, so I ask the Minister to ensure that that is included, because access to the therapies will not be available without that.

Question put and agreed to.


That this House
has considered inequalities in dementia services.

Sitting suspended.