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.

Leaflet

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:

https://onlinelibrary.wiley.com/doi/epdf/10.1111/papt.12090 

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

https://kclpure.kcl.ac.uk/portal/en/publications/seeking-help-for-obsessive-compulsive-disorder-ocd(23ab9e34-1944-4c46-9727-4f82a8552ce8).html

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.

Enablers

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.

 

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A good CBT therapist is like a guide

 

Walkers on brow of hill - clipped

 

A good CBT therapist is like a guide

 

This photo is from a presentation I gave to the OCD-UK conference in 2014.  I took it on the way up to Grisedale Tarn in the Lake District. 

 

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.
http://www.bath.ac.uk/ipr/news/news-0104.html

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’. http://999callfornhs.org.uk/videos/4585875143
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

Umbrella

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.

Umbrella

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

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
dripping

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
invisible
super-contaminating
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
favourite
favourite
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
anymore.

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; http://earthhues.wordpress.com

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

Empathic
Kind
Warm
Compassionate
Caring
Gentle
Humble – able to apologise freely
Down-to-earth
Gritty
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
experiences
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
Confident
Emotional strength
Inspires hope
Solid
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