The Brain Drain - The Alarming Underinvestment in Brain Disorders

By Dr Maria Pannell

When I was around 11, our school Headmaster retired and the deputy head, Miss F, took his place. She was kind, intelligent and well liked. She married, had a family, and had a normal, happy life. She recently passed away after suffering from early onset Alzheimer’s disease for around 12 years. Her children are still in their 20’s. She was diagnosed at 52. A paternal uncle is currently living in a care home after being diagnosed 5 years ago. He is 68. Many people will know of a relative, friend, or colleague who has suffered with this horrifying disease, and calls for an effective treatment get louder when an individual in the public eye raises further attention when their deterioration can be seen after enduring the ravages of AD for several years. Alzheimer’s is the most common type of dementia, making up 60-70% of cases (1), and there are approximately 982,000 people living with dementia in the UK (2). In 2022, 11.5% of deaths had an underlying cause of Alzheimer’s or dementia, followed by ischaemic heart diseases (10.3%), chronic lower respiratory diseases (5.2% of all deaths), cerebrovascular diseases (stroke and others) (5.1%) malignant neoplasm (cancer) of trachea, bronchus and lung (5.0%), and COVID-19 (3.9%). Despite being the leading cause of death, in 2019/2020 it was receiving around 2.5 times less than cancer (3). The shortfall between research into neurodegenerative disease compared to cancer was further highlighted by the 2018 World Alzheimer’s report, which reported that the global ratio of publications on neurodegenerative disease versus cancer was 1:12 (4). Dementia is now the UKs biggest killer (5), but what about stroke, the UK’s fourth biggest killer, or other brain disorders?

Latest figures report that 1.3 million people in the UK are living with stroke (6). The impact on the economy which combines lost productivity, NHS care and the cost of benefits is estimated to be around £43bn per year (7). A 2016 report by the charity Stroke, found that from a budget of £347 million, £157 million (45%) was devoted to cancer, £75 million (21%) to Coronary Heart Disease, £73 million (21%) to dementia and £43 million (12%) to stroke (8). This demonstrates the massive funding shortfall for stroke in the UK, considering its impact on patient health as well as the economy.

Brain tumours are another massively underfunded area, despite being under the funding umbrella of cancer. They are the biggest cancer killer of children and adults under 40, increasing the number of years lost to the disease, another key metric for assessing disease burden. 16,000 people a year are diagnosed with a brain tumour, but in 2023 the charity Brain Tumor Research reported that only 1% of the national cancer spend was on brain tumours (9). In 2018, the UK government pledged £40 million to brain tumour research, however, only £11.3 million had been spent directly on brain tumour research between 2018/19 and 2022/23 (10). ‘Funding per death’ highlights the stark difference in funding for brain tumours: in 2015, £8,759 was spent on leukaemia research per death, compared to £1,858 for brain tumours (11).

According to recent figures from the Motor Neurone Disease Association (MNDA), approximately 5,000 adults in the UK are living with motor neurone disease (MND). MND is a progressive neurodegenerative disorder associated with high morbidity and mortality, and with an aging population worldwide, the burden of this disease is expected to increase (12). According to a 2025 report by Demos, individuals with MND and their families spend on average £11,850 a year on costs associated with the disease (13). Currently the only approved treatment in the UK is the drug Riluzole, which can slow but not cure the disease (14), with a recent study finding the drug gave patients a modest survival advantage of 2-3 months (15). The government has recently pledged £50 million to find a cure.

Neurodegenerative diseases as a whole are chronically underfunded. The penultimate brain condition on our list is Parkinson’s disease (PD). PD is the fastest-growing neurological condition in the world, and the second most common neurodegenerative disorder. It is a progressive disorder that affects movement, and while most people associate it with tremors and other motor symptoms, PD causes many non-motor symptoms that add to overall disability (16). The cost for individuals with PD —including hospital visits and medications— averaged £5,022 per year, and the overall burden on the NHS for the estimated 145,000 people living with Parkinson’s in the UK is over £728m (17).

Epilepsy is the final condition with a woeful funding record. A chronic brain disorder characterized by seizures, mortality rates are lower for this condition compared to others on this list, although sudden unexpected death in epilepsy (SUDEP) results in 1000 deaths per year in the UK (18). Individuals with epilepsy are three times more likely to die prematurely than those without epilepsy (19). There are currently 630,000 people with epilepsy living in the UK, and it is estimated to cost the UK £1.7 billion a year, with more than half due to lost productivity (20). Epilepsy is one of the most common, serious neurological conditions, but despite this epilepsy research only receives 0.3% of the £4.8 billion spent on health-related research, which is further highlighted by the publication disparity: 4.2 million papers were published on cancer in 2018, compared to just 230,000 published on epilepsy or seizures (21).

The statistics are depressing, especially when the UK government spends valuable taxpayer contributions on frivolities, dead end projects and inefficiencies such as:

  • £675 million over 5 years on Whitehall procurement cards - 58.7 times more than spent on brain tumour research
  • £117,000 spent on leather stationary over 5 years - enough to pay the expenses of almost 10 MND patients for a year>
  • £849 million on subsidised meals in the ‘eat out to help out’ scheme - more than the annual spend by the NHS on Parkinson’s related costs (22)

This evidence lays bare the UK’s brain-health blind spot: despite Alzheimer’s, stroke, brain tumours, motor neuron disease, Parkinson’s and epilepsy exacting huge human and economic costs, research and healthcare remain chronically underfunded—a symptom of successive governments with skewed priorities. And yet, in labs, clinics and living rooms, researchers, healthcare workers and carers continue their work with grit and compassion, turning scarce resources into steady progress and proving that with fair investment their dedication can translate into breakthroughs and hope for the future.

References

  1. Crick [Internet]. 2025 [cited 2025 Aug 12]. Why we urgently need more dementia and Alzheimer’s disease research. Available from: https://www.crick.ac.uk/news/2022-09-21_why-we-urgently-need-more-dementia-and-alzheimers-disease-research
  2. Local dementia statistics | Alzheimer’s Society [Internet]. [cited 2025 Aug 11]. Available from: https://www.alzheimers.org.uk/about-us/policy-and-influencing/local-dementia-statistics
  3. Government investment in dementia research [Internet]. Dementia Statistics Hub. [cited 2025 Aug 12]. Available from: https://dementiastatistics.org/statistics/government-investment-in-dementia-research/
  4. World Alzheimer Report 2018 - The state of the art of dementia research: New frontiers. NEW Front.
  5. Dementia is the UK’s leading cause of death | Alzheimer’s Society [Internet]. [cited 2025 Aug 12]. Available from: https://www.alzheimers.org.uk/about-us/dementia-UK-leading-cause-of-death
  6. Prevalence | Background information | Stroke and TIA | CKS | NICE [Internet]. [cited 2025 Sept 9]. Available from: https://cks.nice.org.uk/topics/stroke-tia/background-information/prevalence/
  7. Hidden toll of brain injury costs economy £43 billion a year - United Kingdom Acquired Brain Injury Forum [Internet]. [cited 2025 Sept 9]. Available from: https://ukabif.org.uk/news/701354/Hidden-toll-of-brain-injury-costs-economy-43-billion-a-year-.htm
  8. Stroke Association. Research spend in the UK Comparing stroke, cancer, coronary heart disease and dementia [Internet]. 2016 July. Available from: https://www.stroke.org.uk/sites/default/files/sa-research_spend_in_the_uk_july2016_web.pdf?utm
  9. Brain Tumour Research [Internet]. 2023 [cited 2025 Sept 9]. National spend on brain tumours remains low. Available from: https://braintumourresearch.org/blogs/latest-news/national-spend-on-brain-tumours-remains-low
  10. Duddy C, Gajjar D, Sutherland N. Debate on research and treatment of brain tumours. 2025 Sept 9 [cited 2025 Sept 9]; Available from: https://commonslibrary.parliament.uk/research-briefings/cdp-2025-0094/
  11. Brain Tumour Research [Internet]. 2024 [cited 2025 Sept 9]. Stark facts. Available from: https://braintumourresearch.org/blogs/campaigning/stark-facts
  12. Liu K, Zhang K, Hu A, Li Y, Qin H, Sun W, et al. Global burden of motor neuron disease: unraveling socioeconomic disparities, aging dynamics, and divergent future trajectories (1990-2040). J Neurol. 2025 May 11;272(6):390.
  13. The Financial Impact of motor neurone disease [Internet]. Demos. 2017 [cited 2025 Sept 10]. Available from: https://demos.co.uk/research/motor-neurone-disease-survey/
  14. O’Brien D, Shaw PJ. New developments in the diagnosis and management of motor neuron disease. Br Med Bull. 2024 Dec 12;152(1):4–15.
  15. Radunovic A, Annane D, Rafiq MK, Brassington R, Mustfa N. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2017 Oct 6;10(10):CD004427.
  16. Poewe W, Seppi K, Tanner CM, Halliday GM, Brundin P, Volkmann J, et al. Parkinson disease. Nat Rev Dis Primer. 2017 Mar 23;3(1):17013.
  17. Weir S, Samnaliev M, Kuo TC, Tierney TS, Walleser Autiero S, Taylor RS, et al. Short- and long-term cost and utilization of health care resources in Parkinson’s disease in the UK. Mov Disord. 2018;33(6):974–81.
  18. SUDEP and epilepsy-related deaths [Internet]. Epilepsy Action. [cited 2025 Sept 11]. Available from: https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy
  19. Pickard H, Ashby S, Sibree D, Elliott M, Bhandare A, Wykes RC, et al. Epilepsy Research Institute UK Sudden Unexpected Death in Epilepsy (SUDEP) workshop: Identifying the pre-clinical and clinical priorities for SUDEP research. Epilepsy Behav [Internet]. 2025 Oct 1 [cited 2025 Sept 11];171. Available from: https://www.epilepsybehavior.com/article/S1525-5050(25)00212-4/fulltext
  20. The value of action: mitigating the impact of neurological disorders in the United Kingdom [Internet]. [cited 2025 Sept 11]. Available from: https://impact.economist.com/health/value-action-mitigating-impact-neurological-disorders-united-kingdom
  21. Issuu [Internet]. 2020 [cited 2025 Sept 11]. #ALifeInterrupted Launch Report: Shaping the Future of Research into Epilepsy. Available from: https://issuu.com/epilepsyresearchuk/docs/_alifeinterrupted_-_shaping_the_future_of_research
  22. Efficiency DUOD of G. Wasteful government spending examples UK [Internet]. DOGE UK Official Department of Government Efficiency. 2025 [cited 2025 Sept 11]. Available from: https://dogeuk.org/wasteful-government-spending-examples-uk/
Next steps

Contact us

If you have any questions about medical writing and the services on offer, or would like to discuss the specifics of a project please see our contact page.
Contact us
European Medical Writers Association (EMWA) logo
Membership

EMWA Member

The European Medical Writers Association (EMWA) is a not-for-profit organisation run by its members offering support, training and networking opportunities for medical communicators.
EMWA