Inequalities in Dementia Services

Andrew Gwynne Excerpts

Thursday 16th May 2024 Westminster Hall

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

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.

[Andrew Gwynne (Denton and Reddish) (Lab)]

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%?

--- Later in debate ---

[Andrew Gwynne (Denton and Reddish) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Rees. I yet again commend my hon. Friend the Member for Oldham East and Saddleworth (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 the Member for Halifax (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 the hon. Member for Romford (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.

[Andrew Rosindell]

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?

[Andrew Gwynne]

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.

[Andrew Rosindell]

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?

[Andrew Gwynne]

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.

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

It is a pleasure to serve under your chairmanship, Ms Rees. I thank the hon. Member for Oldham East and Saddleworth (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.

The hon. Member for Halifax (Holly Lynch) talked about her good experience with local services and the importance of dementia-friendly communities. She is absolutely right. My hon. Friend the Member for Romford (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, the hon. Member for Denton and Reddish (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.

[Andrew Gwynne]

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?

[Maria Caulfield]

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.