Inequalities in Dementia Services

Maria Caulfield Excerpts

Thursday 16th May 2024 Westminster Hall

[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.

[Andrew Rosindell]

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?

[Maria Caulfield]

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.

[Andrew Rosindell]

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.

[Maria Caulfield]

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.

[Andrew Rosindell]

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.

[Maria Caulfield]

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.

[Andrew Rosindell]

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

--- Later in debate ---

[Maria Caulfield]

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.