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NHS crisis of neglect is failing people with OCD’, says charity


OCD Action research shows people with OCD are ‘invisible in UK healthcare system’

  • NHS planning bodies failing to collect data on people treated for OCD
  • FOIs show none of England’s 42 integrated care boards (ICBs) collect the data
  • No OCD data for Northern Ireland, while only 1 of 7 health boards in Wales and 1 of 14 NHS boards in Scotland collect any data on treatment in community
  • Data gap shows healthcare system ‘in the dark’ about scale of OCD nationally
  • Community mental health teams are not consistently collecting data on OCD, with many OCD Action contacted reporting they have no data on the number of people treated or treatment outcomes
  • OCD Action says failure to collect data reflects a system which ‘dismisses and trivialises OCD’
  • Charity calling on next government to end failure – by collecting data and guaranteeing timely access to clinically recommended treatments


The NHS is “completely in the dark” about the scale of obsessive compulsive disorder (OCD) in the UK due to a failure to collect patient data on the condition, according to a leading charity.

New research by OCD Action has found NHS planning bodies across the UK are failing to collect data on people treated for OCD, meaning they have no clear understanding of the condition’s prevalence, population treatment needs, waiting times or treatment outcomes.

The charity says the data gap reflects a system that “dismisses and trivialises OCD” and its impact on individuals and their families. It is calling on the next government, following a general election this year, to put an end to this failure by committing to improving data collection and ensuring timely access to treatment.

Freedom of Information requests sent by OCD Action found that none of NHS England’s 42 local integrated care boards (ICBs) collect any data on the treatment of patients for OCD.

Similarly, there is no data collected on OCD by Northern Ireland’s five local Health and Social Care Trusts.

Only one of seven health boards in Wales and one of 14 NHS boards in Scotland collect any data on OCD treatment in the community. These are Swansea Bay University Health Board and NHS Greater Glasgow and Clyde respectively.

Ahead of a general election this year, OCD Action has launched a manifesto with a number of recommendations for the next government focused around three key priorities:

  • End trivialisation and increase understanding of OCD.
  • Recognise and count people with OCD.
  • Guarantee timely access to clinically-recommended treatments.

OCD is understood to affect 1-2% of people in the UK.  It is a powerful and destructive mental health condition. Despite its severity, OCD is treatable with the right support and evidence-based treatment.

On average, people living with OCD face an unacceptable delay of six to seven years from symptom onset to seeking help, largely due to the pervasive lack of understanding and trivialisation surrounding the condition.

Once help is eventually sought, the path to effective treatment, specifically cognitive behavioural therapy (CBT) with exposure and response prevention (ERP), is riddled with obstacles.

These delays inflict unnecessary suffering and prolonged periods of illness, exacerbating the condition into a chronic cycle of relapse and remission. The societal impact is profound, with delays in treatment for OCD costing the UK an estimated £5.1 billion annually. This highlights a critical need for immediate reform in how OCD is perceived and treated at both healthcare and policy levels.

Leigh Wallbank, CEO of OCD Action, said:


“People with OCD in the UK are being failed by a crisis of neglect – OCD is invisible in our healthcare system. Data is the bedrock of effective healthcare, yet our findings reveal a stark absence of OCD-specific data in secondary care.

“This data gap indicates a healthcare system completely in the dark about the scale of OCD, with no clear understanding of the prevalence, treatment needs, waiting times, or treatment outcomes for those with OCD.

“To count is to acknowledge. The government’s failure to collect and analyse data on people living with OCD is tantamount to accepting that those suffering from the condition may not receive the care they need. This oversight reflects a system dismissive of OCD, trivialising the condition and its impact on individuals and their families.

“This must change. We must count every person living with OCD – because every person living with OCD matters. OCD Action is calling on the next government to end trivialisation and increase understanding of OCD, recognise and count people with OCD and guarantee timely access to clinically recommended treatments.”

About OCD Action:OCD Action is the UK’s largest charity dedicated to supporting individuals affected by obsessive compulsive disorder (OCD). For over 25 years, OCD Action has been delivering frontline services which make a tangible and long-term difference to the lives of people with OCD, their families, carers and friends.

Follow OCD Action on Twitter at @ocdaction.


Photo by Annie Spratt on Unsplash

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