It was a grey, dingy and typical English afternoon in a meeting room at the Judge Business School, Cambridge, in early 2017. We were beginning to think about setting up a charity to advance research into new treatments for OCD. At the time, we were calling it the OCD Research Partnership (what was then to become Orchard OCD) as we were still trying to figure out what we were actually trying to do.
Sitting around the table were a group of scientists who were researching OCD at the University of Cambridge. They were led by Professor Trevor Robbins – a big name in the world of neuroscience, whose distinguished career has focused on unraveling the brain mechanisms underlying cognition and behaviour and mental health conditions such as addiction, schizophrenia and, more recently, obsessive-compulsive disorder (OCD).
We’d organised the roundtable with these scientists to try to figure out what the main barriers to carrying out research into OCD were. And of course, one barrier kept coming up: access to funding. As we delved further, we also realised that one of the key problems facing researchers was that nobody had quantified what OCD was costing the economy. This was despite funders always being interested in the economic aspect – namely, how much is the specific disease costing the country and how much would be saved by developing new treatments.
I guess that just shows how money-oriented our society has become: where you have to assign a monetary value to human suffering. But that’s the game we have to play to bring about change.
The big question: just how much is OCD costing the economy and society?
That realisation meant we came away with the idea of doing a cost of illness analysis of OCD – finding out just how much OCD is costing the economy and society in healthcare costs, lost productivity and any other measure we can quantify.
I’d worked on one previously, for my children’s rare genetic disease (Alkaptonuria, Black Bone Disease), where we carried out a cost of illness analysis in 2010 that showed that the average patient with Alkaptonuria was costing the NHS £100,000/year due to improper treatment. We used this in 2012 to convince the NHS to fund an NHS National Alkaptonuria Centre at the Royal Liverpool University Hospital to the tune of £16,000/year per patient, including access to a life-changing drug called nitisinone. Comparatively, millions would be saved by the NHS over the coming years, and, thanks to our combined international efforts, the drug nitisinone is now approved by the EMA and the FDA for Alkaptonuria.
Now, OCD is a common disorder – affecting ~3% of the population according to recent estimates, which is equivalent to 1.5m people in the UK – and its impact as a mental illness is more difficult to quantify than a physical and rare disease such as Alkaptonuria. Nevertheless, carrying out a similar exercise, we believed, would be useful for several reasons.
First, it would help researchers in their funding applications by showing that OCD is costing the UK economy and society a considerable amount of money that could be saved through the development of new treatments. Second, it would help raise awareness within society that the silent epidemic of OCD is extremely costly. And thirdly, it would help reduce the stigma around OCD – often seen as a harmless quirk of personality – which remains a major barrier to patients accessing treatment.
Health economics company Costello Medical offers support
So I approached a health economics company called Costello Medical, also based in Cambridge, as I knew Sophie Costello, the co-founder, from my previous work in rare diseases. In fact, Costello Medical is a very special and unusual company as it has a pro bono department that carries out health economic analyses free of charge for charities to help them further their mission – rather like how large law firms have pro bono departments, though it’s not something I’ve come across in many other sectors.
Fortunately, little persuasion was needed and Costello Medical rapidly agreed to carry out a health economic analysis of OCD with us, led on our side by Prof Naomi Fineberg – Co-founder of Orchard OCD and a world leader in the treatment and science of OCD.
In doing so, we had to answer a fairly simple question: what does OCD actually cost the UK? Not just the cost of prescriptions, therapy appointments or hospital stays, but the wider cost of living with a chronic condition that can stop people working, studying and participating fully in family life.
Surprisingly, there had been little work on this. We know that OCD is common, often begins early in life and can remain disabling for decades. Yet most discussions of its economic impact focused narrowly on what healthcare services spend. But that misses much of the real burden, which equates to a large proportion of the actual cost to society. For example, someone who cannot work because of severe OCD may generate relatively little NHS expenditure while still losing years of income and independence.
We therefore built a cost-of-illness model covering the UK population over one year. This was a prevalence-based model: rather than following newly diagnosed patients over their lifetime, we estimated the number of people currently living with OCD and calculated the costs associated with them during an average year.
The population was divided into children, working-age adults and older adults. And within each group, we separated people by whether their OCD was mild, moderate or severe, as well as by the treatment they were receiving, including no treatment at all. We then estimated the costs associated with each subgroup.
Where possible, we used national databases and published UK data. We also added evidence from the scientific literature, and where reliable figures simply did not exist, estimates from experienced OCD clinicians. As such, this was not an analysis of individual patient records. Rather, it was a model assembled from the best available evidence, with scenario analyses used to test what happened when we included costs that were less certain. And the first result was substantial.
Cost of OCD to the NHS: £378m per year
We estimated that OCD costs the NHS and Personal Social Services approximately £378 million each year. Cognitive behavioural therapy (CBT) was the largest component of formal healthcare spending, while the annual cost of care rose sharply with severity: around £174 for mild OCD, £365 for moderate OCD and £902 for severe OCD. But the most important finding emerged when we looked beyond the healthcare system.
You see, once we included private therapy, expenses paid by patients and lost productivity from people being unable to work, the estimated annual cost rose to approximately £5.1 billion. In other words, more than 90% of the economic burden of OCD fell outside the NHS and social-care system. We found that the largest single contributor was absence from work, rather than medication or hospital treatment. But even that £5.1 billion figure was probably conservative.
Wider cost to society: up to £10.7bn per year
When the model was widened to include harder-to-see costs - particularly reduced productivity among people who remained in work, working time lost by family members providing support, and the additional treatment costs associated with depression - the estimated annual burden rose to £10.7 billion. That broader figure gives a better sense of how much OCD costs outside the healthcare system.
As a result, the wider message was clear. OCD does not become inexpensive simply because people receive too little care. Low healthcare spending may instead mean that the costs have been transferred to patients, families and employers. Better treatment is therefore not just a clinical and moral priority, it is also an economic one.
Unfortunately, dedicated and comparative national OCD cost literature is surprisingly thin. The only other really useful figures I could find were from the US back in 1995: ‘This study, using the human capital approach, estimated the direct and indirect costs of OCD. The total costs of OCD were estimated to be $8.4 billion in 1990, 5.7% of the estimated $147.8 billion cost of all mental illness, and 18.0% of the costs of all anxiety disorders, estimated to be $46.6 billion. The indirect costs of OCD, reflecting lost productivity of individuals suffering from or dying from the disorder, were estimated at $6.2 billion.’ (https://pubmed.ncbi.nlm.nih.gov/10141765/).
Now compare this to how much is spent on research into OCD in the UK. Usefully, MQ – a charity that funds research into psychiatric disorders – did some research on this a few years ago. But the results were harrowing. MQ found that UK mental-health research received about £497 million between 2014 and 2017, averaging £124 million a year, or just over £9 annually for each person affected by a mental-health condition. Funding was also unevenly distributed across diagnoses and research areas, with much of it concentrated in a relatively small number of conditions.
In fact, MQ Mental Health Research estimated that only 89 pence per affected person was spent on OCD research annually. The mismatch between the scale of the burden and the investment in understanding and treating it is really hard to justify. (https://healthopenresearch.org/documents/3-9?)
Now of course, this MQ study was 10 years ago, so things may have hopefully progressed a bit since then, but nevertheless what does this mean for OCD? It means that years of stigma and ignorance have taken a toll. Its symptoms are often hidden, its severity routinely trivialised, and many patients fear that disclosing their intrusive thoughts will lead to judgement rather than help. That has made the condition easier for health systems, funders and industry to ignore despite the huge economic and social burden it generates.
Things are changing: there is hope
But, as I’ve said in other posts, this is changing. And fast. Compared to when I first had my OCD symptoms back in 1990, when nobody had a clue what was going on, the situation today is radically different and for the better. We now have numerous celebrities, influencers and everyday people with OCD raising awareness and reducing stigma, frequent media coverage explaining the many facets of OCD, and much greater awareness of this often devastating disorder among the medical profession.
And of course, just two months ago the Wellcome Trust funded the Orchard OCD International Scientific Conference in London - one of the largest ever gatherings of OCD scientists, clinicians and people with lived experience, and a clear sign that the sector and the science are growing fast.
That’s why I’m hopeful that we are entering a new era for OCD – one in which new treatments are being developed that will ultimately reduce OCD’s devastating effect on our society.
You can read the full paper of the cost of illness study by Kochar et al here: A cost-of-illness analysis of the economic burden of obsessive-compulsive disorder in the United Kingdom.
(This article was written with input from Hannah Ellis, Communications Manager at Serenatis Bio, and with help from ChatGPT and Claude.)
It just seems so unfair to sufferers (where I come from) but ultimately not at all strategically planning for future savings by the NHS/government if lack of investment now into treating the OCD only results in more services and care needed as a result? Savings are the big agenda right now so why no investment into the best and most effective OCD care and services possible to prevent the crisis care which is so common amongst sufferers of this dreadful condition?