Tania explains her experience of conducting research in partnership with Bipolar UK and her aspirations for future projects.

Advance directives in bipolar

I first got involved with Bipolar UK in 2006, when attending support group meetings was the start of me really understanding and starting to manage my health.  A decade later, I found myself connecting with Bipolar UK in a professional capacity.  Having returned to work at King’s College London, my team now entered into a ‘research partnership’ with Bipolar UK.  We would be considering ‘Advance Directives in Bipolar’, as part of the interdisciplinary Wellcome Trust ‘Mental Health and Justice Project’.  

As researchers in this area, we have come to recognise, increasingly, the essential role that incorporating lived experience of bipolar plays in working towards meaningful understanding and treatment.  The partnership with Bipolar UK has been an invaluable element of this work, from research planning meetings, interviews, and surveys, and learning from members at events like the BPUK National Conference.

One of the main elements of this partnership was a large survey on ‘Advance Care Planning’ circulated amongst BPUK members in 2017.  The results were enlightening – not only did it give us a much fuller understanding of the diverse views and experiences of people with bipolar and their families – it was an invaluable contribution to what has been a very limited area of research.  The survey revealed massive support for advance decision-making and was a key part of the evidence which we provided as advisors to the 2018 Independent Review of the Mental Health Act (MHA). 

Advance Choice documents

The outcomes of this review were a commitment from the Government to introduce ‘Advance Choice Documents’ into a revised MHA in England and Wales, something which has the potential to make a huge difference to mental health service users.  Our team has continued to work with the Department of Health and Social Care in an advisory capacity to help draft these law reforms, and the engagement with Bipolar UK has played a major part in informing these changes. 

Alongside this policy work, we have developed and published clinical interventions, such as an advance decision-making template and guidance materials.  BPUK has played a part at every step of the way, with BPUK members informing the consultations, focus groups, and reviewing documents at various points.  We are now putting these ideas into action, as part of a study in a large London mental health trust, working with service users with bipolar, their families and teams, to draft ‘advance directives’ and study the process and its impact. 

The partnership is still ongoing.  At the moment, we’re just about to publish the results of further analysis of the survey.  We’re incredibly excited about the results of this analysis- both in the UK and internationally, people have said that the responses provided by BPUK members are remarkable and could make a major difference for psychiatrists.

So far, the experience of conducting research in partnership with Bipolar UK has been great, and deeply productive.  Bipolar UK provides extraordinary support and understanding to its members.  Through research partnerships like this, the understanding and experience of BPUK members can also play a major part in informing clinical understanding and policy in mental health.

With many thanks to the members of Bipolar UK

Tania Gergel (Lucy Stephenson, Gareth Owen, Alex Ruck Keene, Larry Rifkin, Guy Hindley, Preety Das)

For updates on the project, follow @DrT_Gergel and see our project page on Research gate

It’s always great to hear from people – so, if anyone has any responses or questions, please contact me at [email protected] or via twitter.

For relevant publications so far see:

"Why have I not been told about this?”: a survey of experiences of and attitudes to advance decision-making amongst people with bipolar  

The PACT advance decision-making template: preparing for Mental Health Act reforms with co-production, focus groups and consultation

Advance Decision Making in Bipolar: A Systematic Review 

Advance decision-making in mental health – Suggestions for legal reform in England and Wales