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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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