Recovery Research Network (RRN)
2013 RRN Emails
January 2013
Sent 28 January
1. RRN meetings
The date for the next meeting is 25 April 2013 at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now!
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) 10th ENMESH Conference, Verona, 3 to 5 October 2013. Theme is Recovery-oriented mental health services: therapeutic, organisational and economic challenges. Flyer attached.
4. Papers
The monthly email includes new publications by RRN members that may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) From taking to using medication: recovery-focused prescribing and medicines management. Baker E, Fee J, Bovingdon L, Campbell T, Hewis E, Lewis D, Mahoney L, Roberts G. Advances in Psychiatric Treatment. 2013, 19: 2-10.
Mental health services are increasingly supporting recovery-oriented practice as a basis for service delivery. There is considerable overlap between the values and approaches associated with recovery-based practice and those already endorsed as good psychiatric practice. However, these agreed principles may not be consistently applied and further steps may be needed if the reorientation of the relationship between psychiatrists and people using psychiatric services is to fully reflect recovery principles. This article describes ways in which psychiatric practice could develop, including conceptualising medication as one of many possible recovery tools that a person can actively use to support their wellbeing, and a range of practices available to professionals to support people in taking up an active stance in relation to medication. It also identifies recovery-supportive practices for when someone is unable to fully participate in decision-making, owing to crisis, loss of capacity or concerns about safety.
ii) Commentary on From taking to using medication. Holloway, F. Advances in Psychiatric Treatment. 2013, 19: 11-13.
iii) Information and support needs during recovery from postpartum psychosis. Heron J, Gilbert N, Dolman C, Shah S, Beare I, Dearden S, Muckelroy N, Jones I, Ives J. Archives of Women’s Mental Health. 2012, 15(3): 155-165.
Postpartum psychosis (PP) is a severe and debilitating psychiatric illness with acute onset in the days following childbirth. Recovering from an episode can be a long and difficult process. The aim of this study was to gain an understanding of the difficulties faced by recovering women and to inform the planning of post-discharge information and support services. A study was designed collaboratively by service user and academic researchers. Women with experience of PP were trained in qualitative research methodology. Service user researchers (SURs) led in-depth interviews into women’s experiences of recovery. PP is a life-changing experience that challenges women’s sense of personal and social identity. Recovery themes are organised around ruminating and rationalising, rebuilding social confidence, gaining appropriate health service support, the facilitation of family functioning, obtaining appropriate information, and understanding that recovery will take time. Women suffering from PP must be adequately supported following discharge from psychiatric hospital if we are to address maternal suicide rates. We describe a successful collaboration between academics and service users exploring the needs of women and their families.
iv) Assessing the strengths of mental health consumers – systematic review. Bird V, Le Boutillier C, Leamy M, Larsen J, Oades L, Williams J, Slade M. Psychological Assessment. 2012, 24, 1024-1033.
Strengths assessments focus on the individual’s talents, abilities, resources, and strengths. No systematic review of strengths assessments for use within mental health populations has been published. The aims of this study were to describe and evaluate strengths assessments for use within mental health services.
A systematic review identified 12 strengths assessments (5 quantitative, 7 qualitative). The Strengths Assessment Worksheet (SAW) was the most widely utilised and evaluated qualitative assessment. Psychometric properties of the assessments were assessed against set quality criteria. Data on psychometric properties were available for 4 measures. The Client Assessment of Strengths, Interests and Goals (CASIG) had the strongest psychometric evidence. The SAW and CASIG assessments can be tentatively recommended within clinical practice, although the evidence for all strengths assessments is currently limited. To describe the content of the strengths assessment, the items used to operationalise the concept of strengths in each assessment were extracted and themed. Twenty-four themes were identified and organised into 3 overarching categories: individual factors, environmental factors, and interpersonal factors. These categories form the basis of an empirically based definition of strengths that could be used as a conceptual foundation for new clinical assessments.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk.
page updated 25 September 2013
February 2013
Sent 20 February
1. RRN Meetings
The date for the next meeting is 25 April 2013 at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now!
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) 10th ENMESH Conference, Verona, 3 to 5 October 2013. Theme is Recovery-oriented mental health services: therapeutic, organisational and economic challenges. Flyer attached.
ii) Spiritual Crisis Network Conference, 28 June 2013, University of Sunderland. Finding Solid Ground: investigating mental health, spirituality and extreme human experiences features latest psychology research into anomalous experiencing (Caroline Brett and Charlie Heriot-Maitland) – alternative ways of looking at psychosis – and has Rufus May as a speaker. Find out more.
iii) MSc in Recovery and Social Inclusion, with Theo Stickley and Julie Repper at the University of Nottingham, is recruiting for September 2013. The course will run on alternate Wednesdays. You can enrol for a module at a time and exit with either a Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details email theo.stickley@nottingham.ac.uk.
4. Papers
The monthly email includes new publications by RRN members that may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk
page updated 25 September 2013
March 2013
Sent 11 March 2013
1. RRN meetings
The date for the next meeting is 25 April 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! The agenda will be circulated in the April email. The venue is in the main IoP building next to the David Goldberg Centre.
2. RRN membership profile
If you would like to update your entry, please researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) Spiritual Crisis Network Conference, 28 June 2013, University of Sunderland. Finding Solid Ground: investigating mental health, spirituality and extreme human experiences features latest psychology research into anomalous experiencing (Caroline Brett and Charlie Heriot-Maitland) – alternative ways of looking at psychosis – and has Rufus May as a speaker. Find out more.
ii) IoP Summer School – Recovery: from research evidence to clinical practice and organisational transformation, Monday 1 July to Friday 5 July 2013.
iii) MSc in Recovery and Social Inclusion, with Theo Stickley and Julie Repper at the University of Nottingham, is recruiting for September 2013. The course will run on alternate Wednesdays. You can enrol for a module at a time and exit with either a Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details email theo.stickley@nottingham.ac.uk.
iv) 10th ENMESH Conference, Verona, 3 to 5 October 2013. Theme is Recovery-oriented mental health services: therapeutic, organisational and economic challenges. Flyer attached.
4. Papers
The monthly email includes new publications by RRN members that may be of wider interest.
(i) Development and psychometric properties of a five language multiperspective instrument to assess clinical decision making style in the treatment of people with severe mental illness (CDMS). Puschner B, Neumann P, Jordan H, Slade M, Fiorillo A. Giacco D, Égerházi A, Ivánka T, Krogsgaard Bording M, Østermark Sørensen H, Bär A, Kawohl W, and Loos S. BMC Psychiatry. 2013, 13-48.
The aim of this study was to develop and evaluate psychometric properties of the Clinical Decision Making Style (CDMS) scale which measures general preferences for decision making as well as preferences regarding the provision of information to the patient from the perspectives of people with severe mental illness and staff. A participatory approach was chosen for instrument development which followed 10 sequential steps proposed in a current guideline of good practice for the translation and cultural adaptation of measures.
Following item analysis, reliability, validity, and long-term stability of the CDMS were examined using Spearman correlations in a sample of 588 people with severe mental illness and 213 mental health professionals in 6 European countries (Germany, UK, Italy, Denmark, Hungary, and Switzerland).
In both patient and staff versions, the two CDMS subscales Participation in Decision Making and Information reliably measure distinct characteristics of decision making. Validity could be demonstrated to some extent, but needs further investigation.
Together with two other five-language patient- and staff-rated measures developed in the CEDAR study (ISRCTN75841675) – Clinical Decision Making in Routine Care and Clinical Decision Making Involvement and Satisfaction – the CDMS allows empirical investigation of the complex relation between clinical decision making and outcome in the treatment of people with severe mental illness across Europe.
ii) A decision aid to assist decisions on disclosure of mental health status to an employer: protocol for the CORAL randomised controlled trial. Henderson C, Brohan E, Clement S. Williams P, Lassman F, Schauman O, Murray J, Murphy C, Slade M, Thornicroft G. BMC Psychiatry. 2012, 12:133.
The UK Equality Act 2010 makes it unlawful for employers to ask health questions before making an offer of employment except in certain circumstances. While the majority of employers would prefer applicants to disclose a mental illness at the application stage, many people either wait until they have accepted the job and then disclose to an occupational health professional, or do not do so at all due to the anticipation of discrimination or a wish for privacy. However, non-disclosure precludes the ability to request reasonable adjustments in the workplace, or to make a claim of direct discrimination. Disclosure to employers is therefore a difficult decision.
A recent pilot study by our group of the CORAL decision aid showed that it helped mental health service users clarify their needs and values regarding disclosure and led to reduction in decisional conflict. The present proof of concept trial aims to determine whether a full scale randomised controlled trial (RCT) is justifiable and feasible, and to optimise its design.
In this single blind exploratory RCT in London, a total of 80 participants (inclusion criteria: age ≥18 years, on the caseload of a specialist employment adviser working with people with mental illness; referred to the adviser either from primary care via Improving Access to Psychological Therapies (IAPT) or secondary mental health service; currently seeking or interested in either paid or voluntary employment, and a Decisional Conflict Scale score of 37.5 or greater and stage of decision score 1–5) will be recruited from vocational advice services.
After completing a baseline assessment, participants will be randomly assigned to one of two conditions (i) Use of the CORAL Decision Aid (DA) in addition to treatment as usual or (ii) Treatment as usual. Those allocated to the DA condition will be given it to read and complete, and the researcher will be present to record the time taken and any content that causes confusion. Intervention participants may keep the DA but are discouraged from showing it to other service users to avoid contamination. Follow up interviews will be conducted at 3 months.
Primary outcomes are: (i) stage of decision making score; (ii) decisional conflict scores and (iii) employment related outcomes. Secondary analyses will identify predictors of disclosure and qualitative analysis will explore the impact of the intervention. A reduction in decisional conflict regarding disclosure leading to more effective job seeking activity could have significant economic consequences for people with mental illness in terms of employment rates and productivity.
Please send us the reference and abstract for a new publication you would like included. Let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk.
page updated 24 September 2013
April 2013
Sent 8 April
1. RRN meetings
The date for the next meeting is 25 April 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! The agenda is attached. The venue is in the main IoP building, next to the David Goldberg Centre, in the Robin Murray A room, which is in the new Learning Hub.
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) International Conference on Recovery 2013, May 8 to10, EURAC convention centre, Bolzano. Find out more.
ii) Spiritual Crisis Network Conference, 28 June 2013, University of Sunderland. Finding Solid Ground: investigating mental health, spirituality and extreme human experiences features latest psychology research into anomalous experiencing (Caroline Brett and Charlie Heriot-Maitland) – alternative ways of looking at psychosis – and has Rufus May as a speaker. Find out more.
iii) IoP Summer School – Recovery: from research evidence to clinical practice and organisational transformation, Monday 1 July to Friday 5 July 2013, see flyer.
iv) MSc in Recovery and Social Inclusion, with Theo Stickley and Julie Repper at the University of Nottingham, is recruiting for September 2013. The course will run on alternate Wednesdays. You can enrol for a module at a time and exit with either a Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details, email theo.stickley@nottingham.ac.uk.
v) 10th ENMESH Conference, Verona, 3 to 5 October 2013. Theme is Recovery-oriented mental health services: therapeutic, organisational and economic challenges. Flyer attached.
vi) Refocus on Recovery 2014, London, 12 to 14 May 2014. Flyer attached and more details to be announced soon.
4. Papers
The monthly email includes new publications by RRN members that may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk.
page updated 24 September 2013
May 2013
Sent 17 May 2013
1. RRN meetings
The date for the next meeting is 6 November 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! The venue is in the main IoP building next to the David Goldberg Centre, in the Robin Murray A room. Minutes and presentations from previous meetings are available on this website.
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) New online programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation). See attached flyer.
ii) Spiritual Crisis Network Conference, 28 June 2013, University of Sunderland, Finding Solid Ground: investigating mental health, spirituality and extreme human experiences, featuring latest psychology research into anomalous experiencing (Caroline Brett and Charlie Heriot-Maitland) – alternative ways of looking at psychosis – and with Rufus May as a speaker. Find out more.
iii) IoP Summer School – Recovery: from research evidence to clinical practice and organisational transformation, Monday 1 July to Friday 5 July 2013, see attached flyer.
iv) The Sapphire Summit: Sharing stories to stop stigma will take place on Thursday 4 July 2013 from 9am to 6pm in the Wolfson Lecture Theatre, Institute of Psychiatry (main building). For more information, visit the Sapphire website.
v) MSc in Recovery and Social Inclusion (with Theo Stickley and Julie Repper) at the University of Nottingham is recruiting for September 2013. The course will run on alternate Wednesdays and you can enrol for a module at a time, and exit with either a Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details email theo.stickley@nottingham.ac.uk.
vi) Bournemouth Recovery Conference, 6 September 2013. The conference will take place at Bournemouth University and will be attended by mental health professionals, health commissioners, researchers and service users. The purpose of the conference is to disseminate information about new research, innovation, best practice, and inspirational developments in mental health. There will be four presentation categories – Adult Mental Health, CAMHS, Forensic Settings and Specialist Treatment Services. Flyer attached. There are a limited number of places available free to NHS commissioners. If you wish to apply for one of these places, please contact Kim Meldrum, kim.meldrum@dhuft.nhs.uk. If you have any queries, email info@grayrock.co.uk or call 02380 487592.
vii) 10th ENMESH Conference, Verona, 3 to 5 October 2013. Theme is Recovery-oriented mental health services: therapeutic, organisational and economic challenges. Flyer attached.
viii) Refocus on Recovery 2014, London, 12 to 14 May 2014. Flyer attached and more details to be announced soon and will be available on our website.
ix) The Peer2Peer Network is anchored by the Peer2Peer Group, a user led Steering Group with peer support expertise nationally, regionally and locally. The Peer2Peer Network is dynamic and will be evolving in time to stay relevant and useful to its members. The Peer2Peer Group’s remit is peer support in mental health with a cross disability dimension. If you are interested in joining the network please see the attached registration form.
4. Papers
The monthly email includes new publications by RRN members that may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) Development of a framework for recovery in older people with mental disorder. Daley S, Newton D, Slade M, Murray J, Banerjee S. International Journal of Geriatric Psychiatry. 2013, 28, pp522–529.
Mental health policy is increasingly framed in terms of ‘recovery’. This paper provides empirical evidence of how it applies to users of older people’s mental health services. Practice implications include the need to focus on the maintenance of identity, and embed the values of empowerment, agency and self-management within service delivery.
ii) Living with psychosis: A report on research involving service users, with a foreword by Will Self (November 2012), Brunel University London.
The experiences of people living with psychosis are an important source of knowledge that was explored by the Researching Psychosis Together group based at Brunel University. Starting from their own personal experiences, the group designed this research to find out what is helpful and to demystify psychosis. Two focus groups were held, involving 15 people who discussed what it is like to experience psychosis. They talked about what to do, the importance of talking to others and not avoiding problems. Many people agreed that finding ongoing skilled help was important to feel safe and more receptive when unwell. The findings suggest that services should give priority to understanding individual experiences of psychosis, so support can be more effective and focused on practical problems in life. Doing this research as a group had benefits for everyone involved and the report contains details (on page 22) of how to be involved in the next stage of the Researching Psychosis Together group’s work.
iii) Peer support in adult mental health services: a metasynthesis of qualitative findings. Walker G and Bryant W. Psychiatric Rehabilitation Journal. 2013, 36(1), 28-34.
Peer support involves people in recovery from psychiatric disability offering support to others in the same situation. It is based on the belief that people who have endured and overcome a psychiatric disability can offer useful support, encouragement, and hope to their peers. Although several quantitative reviews on the effectiveness of peer support have been conducted, qualitative studies were excluded. This study aimed to synthesise findings from these studies.
iv) The business case for people powered health (April 2013), a new report from Nesta, the UK’s ‘innovation foundation for public services’. The report argues that the NHS in England could realise savings of at least £4.4 billion a year if it adopted ‘people powered health’ innovations that involve patients, their families and communities more directly in the management of long term health conditions.
v) Joint crisis plans for people with borderline personality disorder: feasibility and outcomes in a randomised controlled trial. Borschmann R, Barrett B, Hellier J, Byford S, Henderson C, Rose D. Slade M, Sutherby K, Szmukler G, Thornicroft G, Hogg J, Moran P. The British Journal of Psychiatry. 2013, 202, 357-364.
It is feasible to recruit and retain people with borderline personality disorder to a trial of joint crisis plans and the intervention appears to have high face validity with this population. However, we found no evidence of clinical efficacy in this feasibility study.
vi) How can we use diagnosis to support people in their recovery?, guidance from the Devon Recovery Research and Innovation Group (D-RRIG).
The D-RRIG meeting held on 22 November 2012 explored the topic of diagnosis. Forty-five people from a wide variety of personal and professional backgrounds debated how diagnosis and the practice of assigning people with a diagnosis could be used in ways that were more supportive of people in their recovery.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk.
page updated 24 September 2013
June 2013
Sent 12 June 2013
1. RRN meetings
The date for the next meeting is 6 November 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! Please see attached agenda for more details.
Note the venue will be in the main IoP building next to the David Goldberg Building, in the Robin Murray A room.
Minutes and presentations from previous meetings are available on this website.
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) New online programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation), see attached flyer.
ii) Spiritual Crisis Network Conference 28 June 2013, University of Sunderland, Finding Solid Ground: investigating mental health, spirituality and extreme human experiences, features latest psychology research into anomalous experiencing (Caroline Brett and Charlie Heriot-Maitland) – alternative ways of looking at psychosis – and has Rufus May as a speaker. Find out more and book.
iii) IoP Summer School – Recovery: from research evidence to clinical practice and organisational transformation, Monday 1 July to Friday 5 July 2013, see attached flyer.
iv) The Sapphire Summit: Sharing stories to stop stigma will take place on Thursday 4 July 2013 from 9am to 6pm in the Wolfson Lecture Theatre at the Institute of Psychiatry (main building). Visit the Sapphire website for more information.
v) Aalborg University Hospital, part of Aalborg University, presents the Aalborg Psychiatric Summer School, 28 to 30 August 2013, see attached flyer for the range of courses available.
vi) MSc in Recovery and Social Inclusion with Theo Stickley and Julie Repper at the University of Nottingham, is recruiting for September 2013. The course will run on alternate Wednesdays. You can enrol for a module at a time and exit with either a Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details email theo.stickley@nottingham.ac.uk.
vii) Bournemouth Recovery Conference, 6 September 2013. The conference will take place at Bournemouth University and will be attended by mental health professionals, health commissioners, researchers and service users. Flyer attached. There are a limited number of places available free to NHS commissioners. If you wish to apply for one of these places, please contact Kim Meldrum, kim.meldrum@dhuft.nhs.uk. If you have any queries, email info@grayrock.co.uk or call 02380 487592.
viii) 10th ENMESH Conference, Verona, 3-5 October 2013. Theme is Recovery-oriented mental health services: therapeutic, organisational and economic challenges. Flyer attached.
ix) The Peer2Peer Network is anchored by the Peer2Peer Group, a user-led Steering Group with peer support expertise nationally, regionally and locally. The Peer2Peer Network is dynamic and will be evolving in time to stay relevant and useful to its members. The Peer2Peer Group’s remit is peer support in mental health with a cross disability dimension. If you are interested in joining the Network please see the attached registration form.
x) Refocus on Recovery 2014, 2-3 June 2014, New Hunts House, London Bridge, England.
4. Papers
The monthly email includes new publications by RRN members that may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) We’re excited to announce the inaugural issue of The Perch. The first magazine of it’s kind, The Perch aims to present a wide range of voices on mental health and recovery, both from established writers and from new, emerging authors and artists. We’re thrilled to share with you this first issue, filled with original, creative work including essays, paintings, drawings, poetry, photography, and personal narratives.
ii) Development and psychometric evaluation of the Discrimination and Stigma Scale (DISC). Brohan E, Clement S, Rose D, Sartorius N, Slade M and Thornicroft G. Psychiatry Research. 2013, 208, 33–40.
Mental illness is associated with unfair treatment in a number of areas of life. There is currently no psychometrically validated measure that has been developed to specifically focus on such experienced discrimination. This study aimed to finalise the Discrimination and Stigma Scale (DISC) and establish its psychometric properties. The DISC was further developed using (1) service user and interviewer focus groups; (2) reading ease testing; and (3) cognitive debriefing interviews. The revised scale then underwent psychometric testing to establish the following properties: reliability; validity; precision; acceptability; and feasibility. The final 22-item DISC demonstrated good psychometric properties (n=86) including inter-rater reliability (weighted kappa range: 0.62–0.95), internal consistency (α=0.78) and test–retest reliability (n=46) (weighted kappa range: 0.56–0.89). Feasibility, validity and acceptability were also established. In conclusion, the 22-item DISC is recommended for use in measuring experienced stigma and discrimination. Additional work to develop a measure of anticipated stigma is recommended.
iii) Development and psychometric properties of a five-language multiperspective instrument to assess clinical decision making style in the treatment of people with severe mental illness (CDMS). Puschner B, Neumann P, Jordan H, Slade M, Fiorillo A, Giacco, D, Égerházi A, Ivánka T, Krogsgaard Bording M, Østermark Sørensen H, Bär A, Kawohl W, Loos S. BMC Psychiatry. 2013, 13:48, 1-10.
The aim of this study was to develop and evaluate psychometric properties of the Clinical Decision Making Style (CDMS) scale which measures general preferences for decision making as well as preferences regarding the provision of information to the patient from the perspectives of people with severe mental illness and staff.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk.
page updated 23 September 2013
July 2013
Sent 17 July 2013
1. RRN meetings
The date for the next meeting is 6 November 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! Please see attached agenda for more details.
Note the venue will be in the main IoP building next to the David Goldberg Building, in the Robin Murray A room.
Minutes from previous meetings are all available on the website.
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly email, but not put on our website.
3. Conferences and events
i) New online programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation) see attached flyer.
ii) Aalborg University Hospital part of Aalborg University presents: Aalborg Psychiatric Summer school by 28-30 August 2013, see attached flyer for the range of courses available.
iii) MSc in Recovery and Social Inclusion with Theo Stickley and Julie Repper at the University of Nottingham, are recruiting for September 2013. The course will run on alternate Wednesdays starting at the end of September 2013. You can enrol for a module at a time and exit with either Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details email theo.stickley@nottingham.ac.uk.
iv) Bournemouth Recovery conference 6 September 2013. The conference will take place at Bournemouth University and will be attended by mental health professionals, health commissioners, researchers and service users. Flyer attached. There are a limited number of places available free to NHS Commissioners. If you wish to apply for one of these places, please contact Kim Meldrum kim.meldrum@dhuft.nhs.uk If you have any queries, email us at info@grayrock.co.uk or call 02380 487592.
v) 10th ENMESH Conference, Verona, 3-5 October 2013. Theme is “Recovery-oriented mental health services: therapeutic, organisational and economic challenges”. Flyer attached.
vi) The Peer2Peer Network is anchored by the Peer2Peer Group, a user led Steering Group with peer support expertise nationally, regionally and locally. The Peer2Peer Network is dynamic and will be evolving in time to stay relevant and useful to its members. The Peer2Peer Group’s remit is peer support in mental health with a cross disability dimension. If you are interested in joining the network please see the attached registration form.
vii) Refocus on Recovery 2014, 2-3 June 2014, New Hunts House, London Bridge, England. See attached flyer.
4. Papers
The monthly email includes new publications by RRN members which may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) The Individual Recovery Outcomes Counter: preliminary validation of a personal recovery measure. Monger B, Hardie, S, Ion, R, Cumming J and Henderson N. The Psychiatrist. 2013, 37, 221-227.
Aims and method: The Individual Recovery Outcomes Counter (I.ROC) is to date the only recovery outcomes instrument developed in Scotland. This paper describes the steps taken to initially assess its validity and reliability, including factorial analysis, internal consistency and a correlation benchmarking analysis.
Results: The I.ROC tool showed high internal consistency. Exploratory factor analysis indicated a two-factor structure comprising intrapersonal recovery (factor 1) and interpersonal recovery (factor 2), explaining between them over 50% of the variance in I.ROC scores. There were no redundant items and all loaded on at least one of the factors. The I.ROC significantly correlated with widely used existing instruments assessing both personal recovery and clinical outcomes.
Clinical implications: I.ROC is a valid and reliable measure of recovery in mental health, preferred by service users when compared with well-established instruments. It could be used in clinical settings to map individual recovery, providing feedback for service users and helping to assess service outcomes.
ii) Conceptualising and measuring the well-being of people with psychosis: Systematic review and narrative synthesis. Schrank B, Bird V, Tylee A, Coggins T, Rashid T, Slade M. Social Science and Medicine. 2013, 92, 9-21.
Wellbeing has become a prominent term in the political arena in recent years. However, in research the concept and use of wellbeing has been unclear, especially in the context of severe mental illness such as psychosis. This systematic review aims to characterise the evidence base relating to wellbeing in people with psychosis, by reviewing how wellbeing is measured, developing a new conceptual framework, and summarising empirical evaluations of psychosocial interventions to improve wellbeing. We conducted a systematic review and narrative synthesis of controlled trials of interventions investigating wellbeing in people with psychosis. The 28 studies meeting the inclusion criteria used 20 different measures of wellbeing. Five dimensions of wellbeing emerged: non-observable, observable, proximal, distal, and self-defined. Interventions to improve wellbeing vary widely. The investigated interventions have been targeted at non-observable, observable and proximal levels, while evaluation measures span all five dimensions. This review offers an evidence-based conceptual framework of wellbeing that can provide an empirical basis for organising future wellbeing research in psychosis. The review also shows that the evidence base for interventions is small and methodologically weak. Recommendations are made for choosing wellbeing measures for future research.
iii) Promoting recovery-oriented practice in mental health services: a quasi-experimental mixed-methods study. Gilburt H, Slade M, Bird V, Oduola S, Craig T. BMC Psychiatry. 2013, 13:167.
Background: Recovery has become an increasingly prominent concept in mental health policy internationally. However, there is a lack of guidance regarding organisational transformation towards a recovery orientation. This study evaluated the implementation of recovery-orientated practice through training across a system of mental health services.
Methods: The intervention comprised four full-day workshops and an in-team half-day session on supporting recovery. It was offered to 383 staff in 22 multidisciplinary community and rehabilitation teams providing mental health services across two contiguous regions. A quasi-experimental design was used for evaluation, comparing behavioural intent with staff from a third contiguous region. Behavioural intent was rated by coding points of action on the care plans of a random sample of 700 patients (400 intervention, 300 control), before and three months after the intervention. Action points were coded for (a) focus of action, using predetermined categories of care; and (b) responsibility for action. Qualitative inquiry was used to explore staff understanding of recovery, implementation in services and the wider system, and the perceived impact of the intervention. Semi-structured interviews were conducted with 16 intervention group team leaders post-training and an inductive thematic analysis undertaken.
Results: A total of 342 (89%) staff received the intervention. Care plans of patients in the intervention group had significantly more changes with evidence of change in the content of patient’s care plans (OR 10.94. 95% CI 7.01- 17.07) and the attributed responsibility for the actions detailed (OR 2.95, 95% CI 1.68-5.18). Nine themes emerged from the qualitative analysis split into two superordinate categories. ‘Recovery, individual and practice’, describes the perception and provision of recovery orientated care by individuals and at a team level. It includes themes on care provision, the role of hope, language of recovery, ownership and multidisciplinarity. ‘Systemic implementation’, describes organisational implementation and includes themes on hierarchy and role definition, training approaches, measures of recovery and resources. Conclusions: Training can provide an important mechanism for instigating change in promoting recovery orientated practice. However, the challenge of systemically implementing recovery approaches requires further consideration of the conceptual elements of recovery, its measurement, and maximising and demonstrating organisational commitment.
iv) Report: Peer support in mental health care: is it good value for money? By Marija Trachtenberg, Michael Parsonage, Geoff Shepherd and Jed Boardman. Centre for Mental Health.
Peer support workers – people with their own lived experience of mental illness – provide mutually supportive relationships in secondary mental health services. Increasing numbers are being employed, both in this country and elsewhere. But good quality evidence on the effectiveness of this form of service delivery is in short supply and even less is known about its cost-effectiveness. This paper makes a first attempt at assessing whether peer support provides value for money, looking specifically at whether peer support workers can reduce psychiatric inpatient bed use, either by preventing admissions or by shortening lengths of stay. Because of the very high cost of inpatient care, the savings that result from even small changes in bed use may be sufficient to outweigh the costs of employing peer workers. We identified six studies in the research literature that give some evidence on the relationship between peer support and inpatient bed use. Re-analysis and aggregation of the data in these studies support a positive conclusion: the financial benefits of employing peer support workers do indeed exceed the costs, in some cases by a substantial margin. It must be emphasised that the evidence for this finding is very limited in both quantity and quality, but nevertheless sufficient to justify continuing interest in the employment of properly trained and supported peer workers in mental health teams, alongside more research evaluating their effects.
v) Briefing: Peer Support Workers: Theory and Practice. By Julie Repper with contributions from Becky Aldridge, Sharon Gilfoyle, Steve Gillard, Rachel Perkins and Jane Rennison. ImROC.
Peer support is ‘offering and receiving help, based on shared understanding, respect and mutual empowerment between people in similar situations’. In this paper we will examine the concepts and principles of peer support and present examples from organisations which now have peers in their workforce. The ImROC programme has recommended the use of peer workers to drive recovery focused organisational change. ImROC recognises the value of a range of different roles for peers in all types of mental health services. Whether they are paid or voluntary, working in public, private or independent services, peer workers have a valuable role to play. We have concentrated on the contribution of peers working inside mental health services because of the multiple benefits that they can bring. Working together, ‘co‑producing’ services alongside traditional mental health professionals, they can offer a truly comprehensive and integrated model of care. We also have to be concerned with maximising ‘value for money’ and we believe that peers – properly selected, trained and supported – can improve the quality of services at no extra cost, possibly even with cost reductions. This would put the voice of those with lived experience truly at the centre of mental health services – which is where it belongs.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk
page updated 22 September 2013
August 2013
Sent 13 August 2013
1. RRN meetings
The date for the next meeting is 6 November 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! Please see agenda for more details.
Note the venue will be in the main IoP building next to the David Goldberg Building, in the Robin Murray A room.
Minutes from last meeting (25 April 2013) as well as presentations, are all available on this website.
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly e-bulletin, but not put on our website.
3. Conferences and events
i) New online programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation), see attached flyer.
ii) Aalborg University Hospital, part of Aalborg University presents: Aalborg Psychiatric Summer School, 28-30 August 2013, see attached flyer for the range of courses available.
iii) MSc in Recovery and Social Inclusion with Theo Stickley and Julie Repper at the University of Nottingham, recruiting for September 2013. The course will run on alternate Wednesdays starting at the end of September 2013. You can enrol for a module at a time and exit with either Certificate, Diploma or MSc. You do not necessarily need a Bachelor’s degree to access the course. For further details email theo.stickley@nottingham.ac.uk
iv) Bournemouth Recovery conference 6 September 2013. The conference will take place at Bournemouth University and will be attended by mental health professionals, health commissioners, researchers and service users. Flyer attached. There are a limited number of places available free to NHS Commissioners. If you wish to apply for one of these places, please contact Kim Meldrum kim.meldrum@dhuft.nhs.uk If you have any queries, email us at info@grayrock.co.uk or call 02380 487592.
v) 10th ENMESH Conference, Verona, 3-5 October 2013. Theme is ‘Recovery-oriented mental health services: therapeutic, organisational and economic challenges’. Flyer attached.
vi) The Peer2Peer Network is anchored by the Peer2Peer Group, a user-led Steering Group with peer support expertise nationally, regionally and locally. The Peer2Peer Network is dynamic and will be evolving in time to stay relevant and useful to its members. The Peer2Peer Group’s remit is peer support in mental health with a cross disability dimension. If you are interested in joining the Network please see the attached registration form.
vii) Refocus on Recovery 2014, 2-3 June 2014, New Hunts House, London Bridge, England. See attached flyer.
4. Papers
The monthly email includes new publications by RRN members which may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) Peer worker research briefing paper which discusses research into new ways of working in mental health services: introducing peer worker roles into mental health services in England.
ii) Please find slides on shared-decision making in mental health services from different perspectives and from both the UK (4 presentations) and Israel, which were presented at the recent conference in Amsterdam of the International Academy of Law and Mental Health (19 July 2013).
iii) Not without us (by Mental Health Peer Connection + Sam Avery) is a film deconstructing the complex issues at the heart of one of the most harmful and prevalent forms of discrimination in America – the chronic abuse and stigmatisation of people labelled mentally ill. Watch what happens when this group of people, often portrayed as a problem to be solved by society, bands together to stand up for their rights by redefining the nature of the problem and reclaiming their status as integral members of society. To watch click here.
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk
page updated 22 September 2013
September 2013
Sent 24 September 2013
1. RRN meetings
The date for the next meeting is 6 November 2013, 10am to 4pm, refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! Please see attached agenda for more details.
Note the venue will be in the main IOP building next to the David Goldberg Building, in the Robin Murray A room.
Minutes from last meeting (25 April 2013) as well as presentations, are all available on this website
RRN members are also invited to the following talk which is later on the same day – please contact Hannah.1.baker@kcl.ac.uk to reserve a place!
The 14th Paul Janssen Lecture – “Preventing Schizophrenia- easier than you think?”
By Professor John McGrath
Queensland Brain Institute, University of Queensland, Australia.
Wednesday 6pm, 6 November 2013
Chair: Professor Tony David
Vote of Thanks: Professor Sir Robin Murray
Where: Wolfson Lecture Theatre, Institute of Psychiatry, King’s College London
De Crespigny Park, London SE5 8AF
Reception following the lecture in Seminar Rooms 1 & 2
RSVP to Hannah.1.baker@kcl.ac.uk
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly e-bulletin, but not put on our website.
3. Conferences and events
i) New Online Programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation) see attached flyer
ii) One Day Conference: Recovery and Social Justice – Transforming Mental Health at Individual, Service and Societal Levels, 9 October 2013, University of Central Lancashire, Westleigh Conference Centre, Preston. For further details see the attached flyer or visit the website http://www.uclan.ac.uk/conference_events/recovery_and_social_justice.php
iii) 10th ENMESH Conference, Verona, 3-5 October 2013. Theme is “Recovery-oriented mental health services: therapeutic, organisational and economic challenges”. Flier attached.
iv) Refocus on Recovery 2014, 2-3 June 2014, New Hunts House, London Bridge, England. See attached flyer
4. Papers
The monthly email includes new publications by RRN members which may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) Voicing Caregivers Experiences was developed through a partnership between the Scottish Recovery Network and Sussex Partnership NHS Foundation Trust. It features narrative accounts of ten people with experience of caring for someone living with mental health problems focussing on their perspectives on recovery and wellbeing. Aimed at people with caring experience, service providers and policy makers the book also features practical activities around how recovery concepts in relation to caregiving.
Within the accounts there is an enormous breadth of emotion from the depths of despair, hopelessness and loss to remarkable resourcefulness, tenacity, resilience and humour. The experiences shared in the narratives are at times harrowing but significantly underpinned by resilience and hope and there are clear signs of where we should focus improvement efforts. There is also good evidence that recovery approaches, and other opportunities for structured learning and reflection, have much to offer people who find themselves in a caring role.
Read more and access Voicing Caregivers Experiences online here: http://www.scottishrecovery.net/Latest-News/voicing-caregiver-experiences-10-new-stories-of-recovery-and-wellbeing.html
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk
October 2013
Sent 21 October 2013
1. RRN Meetings
The date for the next meeting is 6 November 2013 10am to 4pm refreshments from 9.30am, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF. Please book in your diary now! Please see attached agenda for more details.
Note the venue will be in the main IOP building next to the David Goldberg Building, in the Robin Murray A room.
Minutes from last meeting (25 April 2013) as well as presentations, are all available on the website https://www.researchintorecovery.com/rrn/meeting-presentation-archive
2. RRN membership profile
If you would like to update your entry, please email researchintorecovery@kcl.ac.uk. The membership profile will be circulated with each RRN monthly e-bulletin, but not put on our website.
3. Conferences and events
i) New Online Programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation) see attached flyer
ii) Qualitative Research on Mental Health, 2-4th September 2014, Chania, Greece. Key note speakers are Michaela Amering, Ole Dreier and Laurence Kirmayer. For more information see website http://www.symvoli.gr/conference/qrmh2014/page/abstracts
iii) Refocus on Recovery 2014, 2-3 June 2014, New Hunts House, London Bridge, England. See attached flyer
4. Papers and Publications
The monthly email includes new publications by RRN members which may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) Voicing Caregivers Experiences was developed through a partnership between the Scottish Recovery Network and Sussex Partnership NHS Foundation Trust. It features narrative accounts of ten people with experience of caring for someone living with mental health problems focussing on their perspectives on recovery and wellbeing. Aimed at people with caring experience, service providers and policy makers the book also features practical activities around how recovery concepts in relation to caregiving.
Within the accounts there is an enormous breadth of emotion from the depths of despair, hopelessness and loss to remarkable resourcefulness, tenacity, resilience and humour. The experiences shared in the narratives are at times harrowing but significantly underpinned by resilience and hope and there are clear signs of where we should focus improvement efforts. There is also good evidence that recovery approaches, and other opportunities for structured learning and reflection, have much to offer people who find themselves in a caring role.
Read more and access Voicing Caregivers Experiences online here: http://www.scottishrecovery.net/Latest-News/voicing-caregiver-experiences-10-new-stories-of-recovery-and-wellbeing.html
ii) Shanks, V., Williams, J., Leamy, M., Bird, V., Le Boutillier, C., & Slade, M. (2013). Measures of Personal Recovery:
A Systematic Review. PSYCHIATRIC SERVICES, Vol. 64 No. 10.
Mental health systems internationally have adopted a goal of supporting recovery. Measurement of the experience of recovery is, therefore, a priority. The aim of this review was to identify and analyse recovery measures in relation to their fit with recovery and their psychometric adequacy.
iii) Schrank, B., Riches, S., Coggins, T., Tylee., A., & Slade, M. (2013). From objectivity to subjectivity: conceptualization and measurement of well-being in mental health. Neuropsychiatry 3(5), 525–534.
The concept of well-being has not been well defined or reliably measured in academic research. This article identifies four academic strands of well-being conceptualization and measurement (economic, medical, psychological and integrative) and shows how well‑being has shifted from being conceived as a collectivist concept with objective measures, to being conceived in individualistic terms with subjective measures. Given its clinical relevance the main emphasis is on subjective well-being. While well-being has become a key concept in mental health, the article also discusses some limitations to its use in practice and proposes considerations for future research. Key issues are a consensus definition of well-being in people with mental illness, and empirical studies on the measurement of well-being and its determinants. Future research might be based on the ‘good life’ approach, the Complete State Model of Mental Health or the academic field of Positive Psychology.
iv) Sabine Hahn would like to know from members – Does someone know about publication of research focussing of the evaluation of recovery-oriented trainings for mental health nurses / psychiatric health professions with focus on outcomes for user and staff? If you could contact Sabine sabine.hahn@bfh.ch
Please let us know if there is anything you would like included in the next monthly email, by emailing us at researchintorecovery@kcl.ac.uk
November 2013
Sent 20 November 2013
1. RRN Meetings
The date for the next meeting will be in April 2014, dates to be confirmed, at the Institute of Psychiatry, Denmark Hill, London SE5 8AF.
Minutes from last meeting (6 November 2013) as well as presentations, are all available here
2. RRN membership profiles
If you would like to update your entry please email text to researchintorecovery@kcl.ac.uk. This Membership Profile will be circulated with each RRN monthly email, but not put on our web-site.
3. Conferences & Events
i) New Online Programme: International Masters in Mental Health Recovery and Social Inclusion (subject to validation) see the flyer
ii) 4th international WHO-CC meeting (Lille, France), 30- 31 January 2014 – in Lille, France. The World Health Organisation Collaborating Centre for research and training in mental health (WHO-CC, Lille, France) and WHO Europe organise a European congress about empowerment of mental health users. The conference aims to: present experiences of good practices Mental Health, discuss the 19 indicators of WHO / EC Partnership Project on Empowerment and Mental Health Advocacy, and promote the use of these relevant indicators. For more information see Programme congress OMS
iii) Weekend Seminars in Spring 2014: An Extended Introduction to the Open Dialogue Approach with members of the Open Dialogue team and Jaakko Seikkula. 15-16 March, 3-4 May, & 31 May-1 June 2014 from 10am-5pm. Members of the Open Dialogue team from Western Lapland will be visiting the UK to introduce the Open Dialogue approach in some depth at the Round Chapel in Hackney, London. These seminars are likely to be of interest to those who are currently working in psychiatric services, family therapists, psychotherapists and counsellors, NHS managers and policy makers, people with lived experience of psychosis/mental distress, carers/family members, and those who are interested in the application of philosophical principles in mental health services. For more information and to book a place go to http://opendialogueapproach.co.uk/events/weekend-seminars-in-spring-2014/
iv) Refocus on Recovery 2014, 2-3 June 2014, New Hunts House, London Bridge, England. See www.researchintorecovery.com/conference2014
v) Qualitative Research on Mental Health, 2-4th September 2014, Chania, Greece. Key note speakers are Michaela Amering, Ole Dreier and Laurence Kirmayer. For more information see website http://www.symvoli.gr/conference/qrmh2014/page/abstracts
4. Papers/publications
The monthly email includes new publications by RRN members which may be of wider interest. Please send us the reference and abstract for a new publication you would like included.
i) Machin, K., & Repper J. (2013). ImROC briefing paper: Recovery: a carer’s perspective. Please contact us if you would like a copy of the full article
This briefing paper examines what Recovery means for the families and friends of people with mental health conditions. It suggests ways in which these informal carers can support Recovery and looks at how mental health services can give the best possible help to do this. It also provides information about key resources, including the Triangle of Care and a Wellbeing Recovery Plan for families and friends.
ii) Perkins, R., & Repper, J. (2013). ImROC briefing paper: The Team Recovery Implementation Plan: a framework for creating recovery-focused services. Please contact us if you would like a copy of the full article
The ‘Team Recovery Implementation Plan’ (TRIP) was initially developed by Julie Repper and her colleagues in Nottingham and is a tried and tested instrument designed to assist with this goal. This paper describes the instrument and its practical use in a variety of settings.
iii) Repper, J., Aldridge, B., Gilfoyle, S., Gillard, S., Perkins, R., & Rennison J. (2013). ImROC briefing paper: Peer Support Workers: Theory and Practice. Please contact us if you would like a copy of the full article
Peer support is “offering and receiving help, based on shared understanding, respect and mutual empowerment between people in similar situations”. In this paper we will
examine the concepts and principles of peer support and present examples from organisations which now have peers in their workforce.
iv) Repper, J., Aldridge, B., Gilfoyle, S., Gillard, S., Perkins, R., & Rennison J. (2013). ImROC briefing paper: Peer Support Workers: a practical guide to implementation. Please contact us if you would like a copy of the full article
Our experience with the ImROC programme has led us to the conclusion that the widespread introduction of people with lived experience of mental health problems into the mental health workforce is probably the single most important factor contributing to changes towards more recovery-oriented services. In the first paper on this topic (Repper, 2013) we discussed the theoretical background, core principles and the range of potential benefits. In this paper we will discuss practical issues of implementation in more detail.
v) Sabine Hahn would like to know from members – Does someone know about publication of research focussing of the evaluation of recovery-oriented trainings for mental health nurses / psychiatric health professions with focus on outcomes for user and staff? If you could contact Sabine sabine.hahn@bfh.ch
vi) Alison Blank is looking for a small number of people who have or have had experience of substance misuse and mental health problems for individual interviews for a post doc project she is doing. Please contact us for more details.
vii) Henderson, C., Brohan, E., Clement, S., Williams, P., Lassman, F., Schauman, O., Dockery, L., Farrelly, S., Murray, J., Murphy, C., Slade, M., & Thornicroft ,G. (2013). Decision aid on disclosure of mental health status to an employer: feasibility and outcomes of a randomised controlled trial. The British Journal of Psychiatry, 203, pp350-357. Please contact us if you would like a copy of the full article.
Many mental health service users delay or avoid disclosing their condition to employers because of experience, or anticipation, of discrimination. However, non-disclosure precludes the ability to request ‘reasonable adjustments’. There have been no intervention studies to support decision making about disclosure to an employer. To determine whether the decision aid has an effect that is sustained beyond its immediate impact; to determine whether a large-scale trial is feasible; and to optimise the designs of a larger trial and of the decision aid. In this exploratory randomised controlled trial (RCT) in London, participants were randomly assigned to use of a decision aid plus usual care or usual care alone. Follow-up was at 3 months. Primary outcomes were: (a) stage of decision-making; (b) decisional conflict; and (c) employment-related outcomes (trial registration number: NCT01379014). We recruited 80 participants and interventions were completed for 36 out of 40 in the intervention group; in total 71 participants were followed up. Intention-to-treat analysis showed that reduction in decisional conflict was significantly greater in the intervention group than among controls (mean improvement –22.7 (s.d. = 15.2) v. –11.2 (s.d. = 18.1), P = 0.005). More of the intervention group than controls were in full-time employment at follow-up (P = 0.03). The observed reduction in decisional conflict regarding disclosure has a number of potential benefits which next need to be tested in a definitive trial.