Hundreds of thousands of people in England are facing denial about revolutionary new dementia drugs

Hundreds of thousands of dementia patients in England are facing being denied access to revolutionary new medicines because the NHS’s diagnostic capacity lags behind that of any other G7 country, according to a damning report.

After decades of research to find a cure for the condition, which is expected to affect 153 million people worldwide by 2050, scientists have successfully developed the first treatments to tackle the underlying causes rather than just alleviate the symptoms. Two new drugs could be given the green light for use on the NHS within weeks.

However, its effectiveness depends on rapid and early diagnosis of patients. The report, obtained by the Guardian, says the NHS does not have the diagnostic capacity to accurately identify who is eligible in a timely manner.

The analysis shows that England is unprepared for the rollout of new treatments, with “major gaps in diagnostic capacity” for dementia. It also warns of a £14 billion black hole that will need to be plugged if Britain is to diagnose dementia as quickly as the other G7 countries, the US, Canada, France, Germany, Italy and Japan.

To qualify for either of the new drugs, lecanemab and donanemab, patients must be in the early stages of dementia and have had scans to confirm high levels of amyloid in their brains. However, the report says that England has the lowest number of PET scanners per capita of any G7 country and the lowest number of MRI scanners. England also has the second lowest number of dementia specialists needed to diagnose the condition, such as neurologists, geriatric psychiatrists and geriatricians.

The analysis was carried out by experts from organizations including Alzheimer’s Research UK, Alzheimer’s Disease International and the Alzheimer’s Society.

A second study, an NHS briefing paper, also seen by the Guardian, estimates that as many as 280,000 patients in England could be eligible for the new treatments if regulators recommend the drugs for healthcare use. However, if the treatments are approved, the NHS would be unprepared to deliver them, the initial report said.

“The potential approval of the first of the disease-modifying AD (Alzheimer’s) treatments in Britain as early as 2024, and the prospect of subsequent availability in England, shines a light on the large gap in the diagnostic infrastructure needed for high-quality dementia care,” it says.

“While future detection and diagnostic technologies could allow investment levels to be reduced in later years compared to our projections, the progressive nature of AD means that prolonged wait times would deprive countless patients of the opportunity to receive treatment while it will still be effective.”

Dr. Susan Mitchell, head of policy at Alzheimer’s Research UK and co-author of the report, told the Guardian that the NHS had “suffered years of underinvestment in diagnostics” and that as a result, dementia patients were “left to fend for themselves. the cracks”.

“When it comes to diagnosing dementia, timing is everything. But right now, too many people are anxiously waiting to get a brain scan or speak to a specialist, and this is keeping them from getting the care and support they deserve. As new treatments for Alzheimer’s disease are approved by regulators, delays in diagnosis could also hurt people’s chances of accessing them, as they are thought to be most effective for those in the earliest stages of the disease. disease.”

The latest NHS figures show that less than two-thirds of people with dementia (64.5%) have a formal diagnosis – below the government’s target of 67%. People in England wait an average of two years for a diagnosis, and up to four years if they are under 65.

For the report, the authors compared data and statistics for England with those of the six other countries in the G7. The report found that England had the lowest number of PET scanners per 1 million inhabitants at 1.20. Canada has 1.52, Germany has 1.63, France has 2.48, Italy has 3.55, Japan has 4.70 and the US has 5.45.

England also has the lowest number of MRI scanners per 1 million people (6.31), while Canada has 10.06, France 15.38, Italy 30.22, Germany 34.47, the US 40.44 and Japan 55. 21.

When it comes to dementia specialists, England also fares poorly, with 5.04 per 100,000 residents, the report said. Only Canada has a worse record (4.94). France has 6.46, the US 8.82, Japan 11.08 and Italy 15.58. Germany has almost five times as many as England (24.02).

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It is estimated that only 2% of people diagnosed with dementia in England have access to gold standard tests, the report said.

NHS England officials said dementia diagnosis rates were the highest in three years. Staff had worked hard to restore services after the Covid-19 crisis, when people were less likely to present for care, they said.

Mitchell said without an overhaul of the diagnostic system, people in the earliest stages of dementia could be at risk of missing out on unique treatments.

“It will be impossible to improve early or accurate diagnoses without addressing gaps in workforce and infrastructure – and this research shows how far England must go,” she said. “It is shocking to see that we are at the bottom of the G7 tables in terms of PET and MRI capacity, and only slightly better in terms of staffing levels. Investment in NHS staff, equipment and facilities is needed to turn the tide.”

The number of people with dementia in Britain is predicted to rise from 944,000 to 1.6 million by 2050. “This is a crisis that should be at the top of the Prime Minister’s priority list,” Mitchell said.

The Department of Health and Social Care was contacted for comment.

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