Seeking help for OCD: a qualitative study of the enablers and barriers


While I was having CBT for my OCD I decided I to train as a mental health researcher.  I enrolled on an MSc course in Mental Health Services Research.  As part of the MSc we were encouraged to conduct our own research study.  I decided to do a qualitative study on seeking help for OCD, exploring the factors which encourage or push us to seek help, and the barriers to seeking treatment.


Enormous thanks to the seventeen people who so kindly offered to take part in an individual interview.  You participated, often despite considerable OCD-related barriers to taking part, and are deeply committed to furthering understanding of OCD.

The study was published last year in a peer-reviewed journal:

Robinson, K. J., Rose, D. and Salkovskis, P. M. (2017).  Seeking help for obsessive compulsive disorder (OCD): a qualitative study of the enablers and barriers conducted by a researcher with personal experience of OCD.  Psychology and Psychotherapy: Theory, Research and Practice.  90: 193–211. doi:10.1111/papt.12090

If you have access to academic journals, maybe through being a student or working at a university, you can access the paper here: 

Recently a near-final version of the paper has become freely available to everyone online.  It can be found here:

There are three figures in the paper.  The first relates to the time between OCD significantly interfering with participants’ lives and their seeking help, if they had done.  The mean delay for participants in this study was seven years.  Five participants delayed seeking treatment for over sixteen years and one person had never sought help.  However, two people sought treatment within a year.

Graph 4

I recorded the individual interviews, with participants’ consent, and transcribed them.  I then analysed the transcripts using thematic analysis.  The main themes (represented as rectangular boxes below) and subthemes (represented as ellipses) which participants described in relation to barriers to seeking help, are presented in the following visual summary.  The length / width of each ellipse is proportional to the number of participants who mentioned that factor.

Barriers jpeg

The main themes and subthemes which participants described in relation to enablers to seeking help are presented in the following visual summary.  In the paper you can read quotations from the interviews which illustrate the subthemes.


Therapists may be interested in the following ‘Practitioner Points’ included in the paper:

*  People with OCD may face a wide range of barriers to seeking help, including concern about the reaction of health professionals.

*  The level of awareness, kindness and understanding shown by first-line practitioners can be very important to those seeking help.

*  Acknowledging a person’s journey prior to seeking help is likely to foster trust between therapist and patient.

*  Some barriers to seeking help, e.g. fear of criminalisation, may continue to have an important effect afterwards unless sensitively explored and understood.

Huge thanks again to the seventeen people who shared their stories and reflections so generously – this study is yours.



Thank you NHS

What an extraordinary organisation. Out of the millions of people living and working in London, it was able to put one person who’d been struggling with obsessive compulsive disorder (OCD) for the previous 25 years in contact with another person who had specialised in the psychological treatment of OCD for the previous 20 years. The organisation was the National Health Service, our NHS.

The first person was myself. The second was Prof Paul Salkovskis, a Consultant Clinical Psychologist and at that time one of the Clinical Directors of the Centre for Anxiety Disorders & Trauma (CADAT), a specialist NHS clinic at the Maudsley Hospital. Through the NHS, the whole community paid Paul’s salary so that he could work with me, and many others, using specialist cognitive behavioural therapy (CBT) specifically designed for OCD. He not only worked with me on my OCD but also on other problems I had, some of which had developed because I’d had OCD for such a long time. He worked with me until I was better. When I finished therapy I felt that all aspects of my mental health had been transformed. What a remarkable thing to be able to say. This service was completely free of charge. An extraordinary creation. Human society at its very best. Our NHS.

However, at the same time as writing this, I am acutely aware (through conversations with people and through my research) that there is huge variation in the availability of good quality CBT for OCD on the NHS. There are places where people can access excellent quality specialist CBT promptly, but many others where you can’t, or you have to wait a very long time. From my personal experience I know that the NHS is capable of absolutely extraordinary things. This makes me passionate about the NHS, about maintaining all that is wonderful about it and striving to make sure that the service it delivers is equally good for everyone.

When I started treatment I was very sceptical about CBT for OCD. A little later on, when I realised that the therapy was actually working, I struggled for words. Something which had plagued me for decades, permeated every nook and cranny of my life, something which had stopped me doing so much, was going. What could I say to my therapist? Thank you? That seemed woefully inadequate. I was being released from years of fear, from incarceration. I was being given back years of my life which I would otherwise have spent continuously cleaning and washing. It needed more than a thank you! I had that feeling again last week when I was struggling to encapsulate the experience in a few words for a placard to take on the People’s March for the NHS.

Clissold Park

I first read about, and was incredibly inspired by, the women behind the People’s March for the NHS back in the spring. They are a wonderful group of women from Darlington, County Durham, known on Twitter as the #darlomums. They decided to organise a march in support of the NHS, from Jarrow to Parliament. They were going to follow in the footsteps of the Jarrow Marchers who marched for jobs back in 1936. The women’s message was; ‘the NHS is owned by and loved by us and every effort will be made to stop it being sold off to those who put profit before people’.

I had been following their preparations, and then how their 3-week march had been received so warmly by so many different people, and was very keen to attend the last day of the march from Edmonton to central London.

In their press release they called for the repeal of the 2012 Health and Social Care Act and described their four aims; reversal of the closure of NHS services, halt of the privatisation of NHS care, return of responsibility for delivering NHS services to the Secretary of State for Health, and to inform the public about what is happening to the NHS and build support for the NHS.

Their aims reminded me of a very powerful and disturbing lecture I attended earlier this year by Prof Allyson Pollock entitled; ‘The End of the NHS? How the government is privatising healthcare in England’. Allyson is a public health expert and after describing the history of the NHS and explaining in detail what had happened under different governments, argued passionately that there was ‘still a chance to fight policy changes impacting on healthcare in this country’. You can hear Allyson’s lecture here.

On the way to central London on Saturday the march stopped to have lunch in Clissold Park, and we were welcomed by Diane Abbott, MP for Hackney and Stoke Newington. Diane spoke movingly about her mum who came from Jamaica to work as a nurse in the NHS. Later she said, ‘What NHS workers have given us over the years, money cannot buy’. Here is the march leaving the park for central London.

March leaving Clissold Park

In their campaign the women often referred to the history of the NHS; ‘the NHS was created to deliver free and equal healthcare for all irrespective of wealth and those principles are being easily dismantled – which is why the mums believe people should be prepared to fight for it’.

They produced a superb 9-minute film on the history and founding principles of the NHS, and what is happening now; ‘The People’s March Video’.
Really recommend the film. Early on it describes the work of Nye Bevan, the Minister for Health and founder of the NHS in 1948; “He was a champion of social justice and the rights of working people. Despite fierce opposition from Winston Churchill, and doctors themselves, Nye fought fiercely for a fairer system of healthcare. He spoke passionately about a national health service for all, saying; ‘Despite our economic crisis we are still able to do the most civilised thing in the world; put the welfare of the sick in front of every other consideration'”.

One of the banners on the march took up the message with another quotation from Nye;
Nye Bevan

When we arrived in Trafalgar Square for the rally the organisers asked us to say ‘hello’ to the people of Tredegar, Nye Bevan’s birthplace, who had organised a sister rally to coincide with the march in London.

During the march a couple of people talked with me about their own OCD, a woman said she was moved by the placard, and others acknowledged it without words but glances of recognition and appreciation. Three young girls, aged between about 6 and 9, bounded up to me and asked me directly what the placard was about, especially the picture. I explained that this was me when I wasn’t very well, and this was an NHS worker who helped me. And now I’m better.

Thank you NHS.

NHS staff


This morning I was waiting at a bus stop in Bath in the rain.  It was gentle, refreshing and very wetting rain.  I was enjoying watching it while sheltering under my umbrella.  And I remembered a poem I wrote a few years ago now, when I was living in London and coming towards the end of my CBT.


Do you know what?
I could buy an umbrella …
my own umbrella …

Would be useful
living in London
lots of the year
it’s quite mild
don’t need
huge numbers of layers
especially in the underground.

But it does rain sometimes
and lots of umbrellas emerge
bobbing along
people walking briskly
looking very together
they don’t arrive at work

I’d like to be like them.

But before
an umbrella was impossible
cos it needed drying out
usually on the floor
and I couldn’t put things on the floor
very soon I would feel
it was contaminated
and I would have to
throw it away
not worth it.

But a year or so ago
well into therapy
no longer worried
about the floor
I thought
now’s the time
to buy an umbrella.

And I enjoyed it
feeling very swish.

But soon after
I folded it away wet
and left it for what
I thought was too long
before opening it up
to dry it out
no evidence but
thought it must be
riddled with
mould spores.

No good
have to throw it away.

But now nearly end of therapy
really is time to try again
no excuses.

Would love to swish past
dry under my umbrella.

Going walking again

One of the things I used to love before my OCD started was walking in the country. I revelled in the trees, the ploughed fields, the morning and evening light, the views, the colours, the smells, the wind, the sounds, the rain.

Pic by Dave

Around the time this photo was taken I remember going camping in the Lake District for the first time and falling completely in love with the place.

However, as my OCD developed it became more and more difficult to go walking because of my contamination fears, not being able to use public loos, and the sheer exhaustion of having OCD. Over time going on holiday became much more stressful than staying at home.

Walk on the moors

Walking with group
on the moors
Peak District
type of landscape.

Trying as hard as I can
not to step
on any
sheep droppings

Beautiful view.

Tiny dark droppings
all over the place
other people
don’t give them
a second thought
they’re free
to enjoy.

Rolling hills.

I’ve stepped on some
too late
I’ve done it now
now watching my feet
like a hawk
long grasses
trampled underfoot
bounce back
and wave across my legs
so now
my trousers
are contaminated.

No-one knows
the contaminated zones
except me
constant mental noting
how far the contamination
has spread.

Will have to change clothes
and shower
when I get back.

Not enjoying
the walk

In my forties I started cognitive behavioural therapy (CBT) for my OCD at a specialist NHS clinic. It proved completely life-changing.

While I was still having CBT I went to Grange-over-Sands for a work conference. I was aware that the Lake District was tantalisingly close. I longed to go. Longed, with my whole being. But my first thought was no, that’s too difficult at the moment. At that time I hadn’t been away walking, or owned a pair of walking boots, for decades.

However, the longing wouldn’t let me go. I decided that if I bought a pair of boots then, while I was still in Grange-over-Sands, it would be a first step, and one barrier less to me going walking in the future. There was a wonderful old-fashioned walking boot shop in the main street with a vast collection to choose from and a very kind and patient assistant. I got home to East London clutching my new walking boots and within a couple of months I was on my way back, this time to stay in the youth hostel near Windermere.

From then on nothing could stop me. I started going to the Lake District every few months. I decided I wanted to get to know the hills and valleys really slowly, savouring the process, staying at one hostel on each visit.

It’s impossible to adequately describe what I feel when I’m there. I walk and walk, absorbing the colours, the huge expanses of wildness, the sky, the wind, enjoying feeling incredibly small, and the feeling that any worries I’ve been dealing with in my everyday life are even smaller. Feeling deeply, deeply as if I belong there.

And I can’t stop taking photos! I decided to set up a photoblog to share them. It’s called Earth Hues;

I hope the photos will be able to express something of my love for the place, and my joy and wonder and huge gratitude at being able to go walking again.

1.a. DSCF2286 - Langdale valley - contrasting light

What are the personal qualities, values and beliefs we think a clinical psychologist needs to have?

I think this question has relevance to many people … people with a mental health problem thinking about seeking help and embarking on treatment, Mental Health Trust managers advertising for a new Clinical Psychologist to join their team, training programmes selecting future Clinical Psychology trainees etc.

This piece is very much a personal opinion, based on my experience of having OCD, my huge fears of the mental health system, my experience of seeking help and later having cognitive behavioural therapy (CBT) at a specialist NHS clinic.

I think a therapist’s knowledge about, and skills and experience in, CBT and how it is applied to a particular condition are absolutely vital. I think lack of sufficient knowledge, experience and skill on the part of the therapist is a very important reason why some people with OCD do not get better or do not do as well as they could after CBT. Over time I have become acutely aware of how fortunate I was to have a therapist who was so knowledgeable and skilled and experienced in specialist CBT for OCD.

However, I feel I was only able to access the immense knowledge, experience and skills he had because I felt comfortable with him as a fellow human being. And not simply comfortable enough to have a passing chat with … but someone I came to trust at a very deep level … someone I trusted enough to begin talking about terror, pain, despair, intense regret, and loss. About rubbish, shit, urine, blood, and semen. And to begin to believe that after decades of OCD, just possibly, things could be different. Someone who could persuade me to take risks, big risks. And later share my elation as I began life after OCD.

I think being a clinical psychologist is an extraordinary job; difficult, complex, and immensely rewarding. I think it requires people with very special, and at the same time very down-to-earth, qualities and values.

I think sometimes therapy doesn’t get going, or isn’t as helpful as it could be, or breaks down, because a therapist does not have the necessary personal qualities or values.

Below I have tried writing down, in no particular order, different qualities and core personal values and beliefs which I think it is important for a clinical psychologist to have. I guess each of us would come up with a different combination of qualities and values that we’d be looking for, but I suspect too there may be big areas of agreement … we’re talking about fundamental human stuff. What would be on your list?

Personal qualities

Humble – able to apologise freely
Able to relate easily to people in all sorts of situations / from all sorts of backgrounds
Wise – has experienced enough of life themselves (in a non-clinical way), and reflected on it, to be able to relate easily to a wide range of people and
Natural – doesn’t use a professional façade
Honest – really honest!
Willingness to accompany people in painful situations, be alongside them with and through the pain
Not scared of people’s emotional pain / fear / anger
Capable of being deeply moved during therapy, and comfortable about showing that / sharing that
Open – sharing own personal experience where appropriate
Has experience of / can remember being vulnerable her/himself
Listens genuinely / respectfully
Able to interrupt respectfully
Makes people feel understood / valued
Emotional strength
Inspires hope
Inspires people around them, including clients
Supportive to people around them, including clients

Personal values / beliefs

Treats clients, and everyone else, as completely equal human beings
Sees client as a whole person and treats her / him in that way
Sees their role more as a highly skilled and compassionate guide / teacher rather than a clinician
Deep commitment to their clients
Deep commitment to the principles of the NHS
Opposition to private practice, and commitment to not doing private practice themselves, now or in the future
Awareness of power imbalance between client and clinical psychologist / mental health system more generally
Willingness to challenge institutional policies / practices / culture which degrade clients
Willingness to challenge colleagues who are insensitive / behave unethically towards their clients / are not using evidence-based treatment with their clients
Can give examples of where they’ve been willing to stand up and be counted, particularly in a mental health context
Willingness to express anger, if necessary, on issues of institutional / individual practice
Independent thinker
Free spirit

A very personal image of OCD

Researchers at the University of Bath were recently invited to submit an image of their research, together with a brief description, to be shown to the public.  I think it’s really difficult choosing images to try to represent mental ill-health.  Images can be so powerful; they can contribute to very negative stereotypes of mental illness but they also can be incredibly positive and express things it is difficult or impossible to put into words.  I know that for OCD more specifically, many people with OCD are frustrated that the public often think of OCD as being limited to contamination concerns and hand-washing.  They are keen that much wider representations of OCD are given in the media.

On this occasion I decided to use a very personal image of my own OCD, even though it could be seen as a negative image, and it focuses on contamination fears. I’d be really interested in your reactions to the image.  Last weekend I stood next to it for a number of hours at a public exhibition in the centre of Bath.  A part of me definitely felt awkward, embarrassed and vulnerable but at the same time I long for a time when we, as a society, can talk openly about mental health problems, and not feel ashamed.  Fear of stigma was a huge reason why I delayed seeking help for so long.

In the course of the weekend I had some very moving conversations with individual members of the public who just happened to be passing by … the sort of conversation where two human beings share something very real, deep and important with each other.  It was a real privilege to be part of those conversations.

Images of Research 2013

Stigma and OCD: a few thoughts

I wrote the following piece for the OCD-UK website during OCD Awareness Week in October 2011:

Hello.  My name’s Karen Robinson.  Ashley asked if I could write something about stigma and OCD.  So I have put together a few thoughts, drawing on my personal experience of OCD and seeking help.

My OCD came on suddenly and acutely when I was 18, and within months was hugely disabling, but I didn’t go to my GP until I was 42.  My main reason for not seeking help was my intense fear of the stigma which I thought I would experience if I sought treatment.  I put huge efforts into keeping my OCD secret, or as hidden as possible.  I only told a few people I was very close to.  But even then, I made efforts to shield them from the depths and severity of it, the terror.  By the time I sought help, my OCD had severely affected the course and quality of my life.

After seeking help I received specialist cognitive behavioural therapy (CBT) for my OCD, and related problems.  Over a period of years the CBT proved completely life-changing.  I would never have believed that my life could be so dramatically different.  It’s not possible to adequately express the joy and thankfulness I felt, and still feel.  Years that I would have spent continuously washing, cleaning and checking, were now my own, to do whatever I liked with!  Partly because the CBT was so incredibly effective, I also felt intense regret that I hadn’t sought help earlier.

So what was this fear of stigma, that was so powerful that it stopped me seeking help?

It was the fear, for example, that when I went to the GP, and told him or her about my OCD, a flicker, even the barest flicker, of disdain would go across their face.  Maybe hastily concealed and fleeting, the flicker would nevertheless add to their power, and reduce mine.

The fear that when I next saw the doctor, maybe for a physical health problem, the way they treated me, either as a person, or in terms of medical treatment, would be negatively affected by their now (even only in the back of their minds) classifying me as a ‘mental health patient’.

The fear of having a mental health record for the rest of my life … and the effect I thought that would have on my studies, my career.  The irreversibility.  Once it’s there, official, even if I completely recover, it will always be there.  And people I don’t necessarily know, or haven’t  yet come to trust – medical staff, doctors, receptionists, occupational health staff when I apply for a job, travel insurance staff when I want to go on holiday – will make judgements about me on the basis of that record.

The fear that if I sought help I would have to share the very intimate and frightening experience of having OCD, with a therapist, regardless of whether I felt comfortable with them, or felt understood and respected.

The fear that my line manager and work colleagues might treat me a little differently, if they knew.  Maybe only subtly.  A slight wariness, awkwardness, unease.  An extra friendliness.  Treating me carefully.  Looking after me.  Making allowances.

Once it was official, I felt I’d be in a different camp, forever.  A camp with, in the main, no obvious external marking, and yet one that was very clearly demarcated in the minds of those inside it and outside.

Much of my fear of stigma, and fear of the mental health system, was not OCD-specific.  I knew people who had experienced depression, eating disorders, trauma and psychosis.  Many of the people I knew had eventually accessed mental health services, although not always voluntarily, but I only knew one person who’d had a positive experience.

One thing with OCD is that you can, at a big cost and with massive effort, keep huge swathes of it secret.  Perhaps particularly if you live alone.  Only you know the intensity of the intrusive thoughts, the fear they generate, their relentlessness, and how apparently ‘mad’ they are.  ‘Mad’ in the sense that you know perfectly well that most people would not see the risk in the way you’re seeing it.  I knew with huge clarity that my feeling, and terror, that I still had semen on my hands weeks and months after I had last seen my boyfriend, and moreover that that semen could make other women pregnant if they touched something I had touched, was not ‘normal’.  The fear was so strong that it was making me avoid using shared toilets, and eventually led to me wetting the bed.

I had no doubts that I was unwell mentally, and needed help.  But each time I weighed up the potential risks and benefits of seeking help from the mental health system, with all its associated stigmatisation, I concluded that it was better for me to struggle on alone.  I re-considered, and re-evaluated that decision many times over the subsequent decades, but each time I eventually, painfully, came to the same decision.

I eventually sought help, not because I felt the risk of stigmatisation had got any less, but because I had very sustained and loving support (but no pressure) from my partner, and a counsellor from a voluntary organisation.  And so eventually I felt able to face the mental health system.  The first two years of seeking help were grim …. far worse than the decades struggling with OCD on my own.  However, when I began having CBT with an NHS therapist who was highly experienced in OCD and treated me as a completely equal human being, the remarkable changes began to happen.

Reflecting on my experiences of seeking help I decided to train as a mental health researcher.  Some members of OCD-UK may remember kindly participating in a research project I conducted a few years ago looking at the factors which encourage people to seek help for their OCD and the barriers to seeking treatment.  Many participants described stigma-related factors which acted as barriers to their seeking help.  I am now working on a larger-scale research project, drawing on the themes found in the initial study, and trying to find out whether these themes are also true for a much larger number of people with OCD.

So, to what extent did my long-held fears of stigma turn out to be true when I eventually did seek treatment?  Well, my experience has been very mixed.

I still find nearly all mental health buildings scary, institutionalised and stigmatising.  I have met a few mental health professionals who are warm, natural, respectful and completely non-stigmatising.  Indeed, they are actively acting against stigma in the way they personally behave, and in the wider world.  I think more mental health professionals would be like that if their training gave them the confidence to be, and if their subsequent experience of mental health practice did not de-sensitise and harden them.  Sadly, when I think about the people I have met who have been the most stigmatising, mental health professionals feature prominently.

Since seeking help I have been much more open with people about my history of OCD, including with potential or actual employers.  They have responded in a range of ways, from very positive, to pleasant but quite awkward, to very negative in quite a subtle way.  Their reactions have probably reflected their levels of awareness and at-easeness about mental health, and the extent to which they see people with mental illness as equal to them, or ‘other’.

In the wider world, in general people have been much less stigmatising than I anticipated.  It is not uncommon for people to tell me about a mental health problem that they have experienced or someone they know has experienced, after I have told them about my OCD.

It is a huge relief not to have to put all that energy into hiding a part of myself.  It makes me feel infinitely more confident in the world not living in dread that someone might find out this stigmatising thing about me.

However, depending partly on my level of confidence on the day, and whether the other person is in a potentially powerful position in relation to me, I am still selective about who I tell.  For example, I found myself deleting my e-mail signature which says ‘Researcher with personal experience of OCD and CBT’ when I wrote to a mortgage provider recently, and didn’t explain why I was so interested in doing research on OCD when I was in conversation with a potential landlady.

So, in some situations stigma has been as bad, or worse, than I feared, in others not as bad, and in some not present at all.  However, the effect of my eventual treatment was beyond my wildest dreams.  And I have met other people who have been hugely helped by specialist CBT for OCD.  So I would urge anyone hesitating about seeking treatment, maybe because of stigma-related concerns, to summon all the support they possibly can and go for it.  And keep going, and keep going, until they find someone who is skilled at CBT for OCD and who they feel totally comfortable working with.

Thank you to OCD-UK for all the work you do, in public, and in hundreds of private conversations, to support people with OCD, raise awareness of the condition, and work towards the availability of prompt, good-quality treatment for everyone who needs it.

Karen Robinson

9 October 2011