As political parties push on with their election campaigns, grand promises are being made about tackling sky-high NHS waiting lists. If elected, Keir Starmer has promised to deliver 40,000 extra appointments, scans and operations a week to get non-urgent waits down to the 18-week target, while Rishi Sunak has pledged to boost the number of GP appointments and increase the scope of pharmacists to treat more common conditions. There are currently 7.5 million cases of people waiting for elective (non-urgent) treatment – three times what it was a decade ago, and the highest figure since records began in 2007.
These long waits are causing people’s physical and mental health to deteriorate. Take, for instance, the 800,000 people waiting in pain for orthopaedic operations such as knee or hip replacements, whose joints will have worsened by the time their operations come around; or the tens of thousands waiting for a dementia diagnosis, whose disease progresses during this time.
Dementia is currently the leading cause of death in the UK. There are more than 800,000 people living with the disease (projected to rise to one million by next year), of which roughly 40,000 are under the age of 65. According to the Alzheimer’s Society, more than 30,000 people are waiting up to a year for an initial appointment with a memory clinic, while those aged under 65 can wait as long as four years.
This is a population health crisis, but also an economic one. There are 700,000 unpaid carers for people with dementia (such as their family or spouses), pushing them out of employment and worsening their own health outcomes. The current cost of dementia to the UK is £42bn per year, and is expected to more than double by 2040.
While this epidemic is in part due to our ageing population, it is in many ways a “crisis of our own making”, Craig Ritchie tells me. Ritchie is a psychiatrist and dementia expert, who has worked extensively across both research and clinical settings. Last year, he quit his NHS job in Scotland over frustrations that the health service does not have the “infrastructure” to deliver pioneering or life-saving treatments for dementia patients. He set up and now runs a neuroscience research institute called Scottish Brain Sciences, which is dedicated to discovering early diagnosis tools and treatments for people with brain conditions.
Dementia patients face multiple, complex barriers, he says, with long waiting times for diagnosis being just one part of the story. “Over the years, we’ve lowered our expectations for what’s acceptable,” he says. “An 18-month waiting list for a memory clinic appointment has become OK – whereas if it was an 18-month waiting list for cancer, [people] would be up in arms. We’ve come to accept as a society, or certainly as a clinical community, that it’s OK to wait [that long].”
Another is the “paradox”, he says, in which common health conditions, such as dementia, tend to receive fewer resources and money per patient, resulting in poorer clinical care. Healthcare provision in the UK is also still too focused on treating, rather than preventing, sickness, which ultimately ends up in more complicated and expensive treatment.
“We’re still very much a national illness service rather than a national health service,” he says. “We’re still waiting for crises to develop, and we’re seeing people for the first time at a costly stage of their disease. But we don’t seem to take the health economic argument home with us and actually do something about it.”
Unlike heart health or cancer, there are few prevention campaigns around dementia, yet they could be very effective. Beyond genetics and ageing, lifestyle factors can influence someone’s likelihood of developing neurodegenerative diseases later in life, including our diets, pollution levels, physical exercise, loneliness and even the quality of our hearing. It’s estimated that 40 per cent of dementia cases could be prevented or delayed by protecting our brain health. Research consistently shows that the economic benefits of prevention outweigh those of investing in treatment – every £1 spent on primary or community care increases economic output by £14, compared with every £1 spent on acute care increasing output by £11.
Ritchie prefers the term “brain health” to “dementia”, he says – because the former is a more positive take on prevention while the latter focuses on the outcome of complacency. “At a population level, we need to do more to address the risk factors for dementia,” he says. “There’s a brain health pyramid, where you’ve got public health policy work at the bottom, then it goes up through targeted populations, community outreach, then eventually memory or brain health clinics.”
But the NHS has long been confused about where to place dementia, which also impacts the quality of care. Patients fall through the cracks between “mental health” and “neurology” departments. Historically, dementia was included within mental health services because patients tend to present with symptoms such as agitation, depression and anxiety, Ritchie explains.
“We should have a specialty that is dedicated to people with neurodegenerative diseases, and then we work across the life course – not just on older people with dementia,” says Ritchie. “Sitting within mental health is not a good fit.”
A neurodegenerative specialism could sit within geriatric medicine, neurology, psychiatry, or even public health. It would include experts from all these fields and more, with a similar example being HIV medicine, which has physicians across multiple areas working within one team. “I think that’s exactly where we should be going,” says Ritchie. “Looking at this as a public health problem, not necessarily a psychiatric or mental health or neurological problem.” A brain health tsar or government “directorate” could also be responsible for delivering policy on this issue, he adds, working with different experts to reform how services are delivered.
Public health services are delivered on a local level and cover a range of prevention services to keep people “well”, from smoking cessation and drug and alcohol services to improving air quality. Unfortunately, along with many council services, provision has been depleted in recent years due to a lack of devolved funding. The public health grant – which is delivered by the Department of Health and Social Care to local authorities – has been cut by 28 per cent on a real-terms, per-person basis since 2015-16. More deprived areas, which already have higher levels of poor health, are expected to be most heavily impacted by these cuts.
The Health Foundation predicts that there will be more than nine million people living with serious illnesses such as diabetes, obesity and depression by 2040, triple the number in 2019. Ritchie warns this could “drive another wave of poor brain health and neurodegenerative disease”, and the onus shouldn’t be on individuals to fix it, but on the next government. Regardless of rhetoric around nanny states and personal freedoms, a risk factor like air pollution is out of people’s control.
“It’s very hard to control the environment around you, or the air you breathe,” Ritchie says. “I think that’s something – such as particulate matter – where public health policy needs to be looked at on a government level. All the risk factors for poor brain health accumulate as you go down the socio-economic status ladder – we have to address that disparity.”
There also needs to be a concerted effort to change perceptions of dementia as an “old person’s” disease, says Ritchie – instead, government campaigns promoting brain health should be targeted at people as young as teenagers and adults in their twenties. Brain Health Scotland runs the Stars programme, which teaches schoolchildren and their parents about keeping their brain healthy through socialising, nutrition, physical activity, getting enough sleep and physical safety, such as wearing a helmet during certain sports. “We never mention the D-word,” says Ritchie. “We talk about the value, why you might want to have a healthy brain, because it makes you smarter at school, or it helps you perform better in sports.”
Of course, 60 per cent of cases can’t be prevented through lifestyle changes. Identification of the early signs of deterioration is also crucial to changing the trajectory of this global killer, explains Ritchie. Part of that is debunking the idea that the main symptom is memory loss, when early brain changes could be spotted in people’s forties or fifties, if only they had access to the right testing.
Innovation in earlier detection is advancing. This includes the development of blood tests for Alzheimer’s (the most common form of dementia), where the presence of “blood-based biomarkers” can be spotted, in this case, in certain proteins. This could potentially replace existing diagnostic methods such as lumbar punctures (where a needle is inserted into the spine), which is invasive and uncomfortable for the patient and can’t detect changes as early.
The development of more effective treatment, such as disease-modifying therapies, is also under way, which could be transformative in slowing the progression of Alzheimer’s disease rather than just relieving people’s symptoms of it. However, these therapies have faced approval delays by the US drug regulator, the Food and Drug Administration, due to concerns around their efficacy vs their side effects.
Clearly, more medical research is needed. According to the Alzheimer’s Society, government investment into dementia research is roughly £82.5m, equivalent to just 0.3 per cent of the total annual cost of dementia to the UK. But with patients facing long waits just for a memory test, Ritchie says there’s an argument to be made for investing more money into basic infrastructure instead, because the NHS currently lacks the resources to deliver innovative new therapies effectively.
“It might be slightly controversial, but if we spend £1m on a research study, could that taxpayer money be better spent on access to an MRI scanner?” he says. “We’re spending hundreds of millions on research, while we have two-year waiting lists. What would the taxpayer want – more research, or easier access to care? That’s a discussion that needs to be had at a population level.”
Whichever party forms the next government, prioritising reduced waiting lists, freeing up hospital capacity, and fixing the UK’s broken social care sector will be essential to tackle this complex crisis. With rates of unemployment at an all-time high, it’s not just long-term sickness that is keeping people out of work, but unpaid care. In 2021-22, 400,000 family carers left paid employment to look after a disabled or older person. While the Liberal Democrats have pledged an ambitious plan around free personal care to reduce pressure on hospitals, we’re yet to see concrete social care plans from either Labour or the Conservatives. According to the Centre for Social Justice, proper reform could see these people re-enter the workforce and save the UK economy £6bn. And in the meantime, making brain health a public awareness priority could go some way to ensuring people live longer, happier and healthier lives.
“I can imagine that for the foreseeable future, we’re going to see that ageing population continue, which should be celebrated, but now it’s seen as a risk to society,” says Ritchie. “We need to reframe it and say: how do you ensure your brain lives as long as your body does? We’re all going to die of something – but let’s die cognitively healthy. I think that’s entirely achievable.”
This article is part of an ongoing series on major health crises. See here for more.
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