Project Information

For information about the project please contact Ms. Alex Collis, project researcher:Alex.collis@anglia.ac.uk

Project manager and principal investigator: Prof. Shula Ramon:Shula.ramon@anglia.ac.uk

Qualitative research adviser: Dr. Nicola Morant:
n.morant@anglia.ac.uk

Members of the project management team (Click to show):

  • Dr. Fiona Blake
  • Judy Dean
  • Dr. Furhan Iqbal
  • Amy Li
  • Sheena Mooney
  • Nicola Morant
  • Carole Morgan
  • Geraldine Owen
  • Prof. Shula Ramon
  • Samantha Roberts

Members of the project consultation phase working group (Click to show):

  • Dr.Fiona Blake
  • Judy Dean
  • Jeannette Harding
  • Dr.Furhan Iqbal
  • Amy Li
  • Sheena Mooney
  • Nicola Morant
  • Carole Morgan
  • Sarah Rae
  • Prof. Shula Ramon
  • Samantha Roberts

Members of the project training programme working group (Click to show):

  • Francis Atiemo
  • Dr. Fiona Blake
  • Leigh Cason
  • Chris Jenkins
  • Amy Li
  • Sheena Mooney
  • Carole Morgan
  • Mary Jane O’Sullivan
  • Sarah Rae
  • Prof. Shula Ramon
  • Dr. Saba Syed
  • Dr. Ute Stead

Members of the IT group (Click to show):

  • Amy Li
  • Prof. Shula Ramon
  • Rod Rivers
  • Dr. Saba Sayed
  • Dr.Ute Stead
  • Jenny Tilloston

Members of the project advisory group (Click to show):

  • Francis Atiemo
  • Dr. Fiona Blake
  • Amy Li
  • Clare Mundell
  • Sarah Rae
  • Prof. Shula Ramon
  • Rod Rivers
  • Jenny Tilloston

Background information

ShIMMe is an independent research project funded by the NIHR under its Research for Patient Benefit (RFPB) programme (grant reference PB-PG 0909-20054) between 2011 to 2014.

Views expressed are those of the authors and do not necessarily represent those of the NHS, the NIHR, or the Department of Health

The project is a partnership between Cambridgeshire and Peterborough Foundation Partnership Trust and Anglia Ruskin University.

From the outset this has been a partnership between service users, professionals in mental health and researchers. The partnership is expressed in shared membership in the project management team, its working groups, advisory group, and in co-leading the training programmes.

This project came out of a community initiative established by service users, CPNs and carers, initially focused on discussing options of those on medication and their families, that took place between 2006 to 2009.

The research project has been developed initially by members of the research group of the community initiative, and is currently run by academic researchers, service users, mental health practitioners and professionals (psychiatrists, CPNs, care-co-ordinators and peer support workers). Researchers, service users and trust professionals are amongst members of the project management team, advisory group, IT working group and the training programme working group.

The partnership working is expressed also in that both the consultation phase and the training phase are co-led by service user trainers, CPNs and psychiatrists.

We hope that findings from the project will help to improve mental health services both locally and nationally in relation to the important issue of managing psychiatric medication.

There is a perception, supported by preliminary research, that users of psychiatric medication often experience a one-sided relationship with those prescribing medication. In particular, service users report lack of involvement or choice in the treatment selected for them. They feel ill-informed and uninvolved in decisions about their initial and on-going treatment. Many service users and mental health professionals feel that psychiatric medication might be more effective if changes in practice involving clinicians and service users were brought about.

A principal aim of this research is to test whether it is possible to increase the involvement of service users in decisions about their medication, and whether this will lead to worthwhile improvements. After a review of worldwide best practice and consultation with local stakeholder groups, a training programme will be developed and used within a local NHS adult community psychiatric service. Service users, psychiatrists and community psychiatric nurses will be trained in how to make more collaborative decisions about medication. The desired effect of the training is that patients supported by clinicians will become increasingly involved and better able to make informed decisions about their medication, that they feel happier with these decisions, and that their relationships with professionals improve.

This research is important for service users because it will enable more focus on their concerns, experiences and goals relating to psychiatric medication. It is important for clinicians who will develop a better understanding of patients’ concerns. The project will hopefully lead to increased mutual confidence and more appropriate and successful use of medication that is sensitive to individuals’ needs.

If successful, it would inform further research and could influence the training of NHS clinicians.

What do we know about shared decision making in psychiatric medication management?

Shared decision making (SDM) involves partnerships between professionals and service users who share information, consider options and arrive at treatment decisions together . Service users contribute important information concerning their values, experience and goals . In mental health, SDM is compatible with the increased focus on enabling service users to be active participants in the process of rehabilitation and recovery. Schauer et al (1) who explore the value and the use of SDM in mental health note that it is less common than in physical health and primary care (2), although mental health service users express preferences for more active involvement in medication-related decisions (3, 4) . Priebe et al (5) and Joosten et al (6) also highlight the value of SDM in enhancing quality of life in mental health service users.

Psychiatric medication is the main treatment modality used in UK mental health services across diagnostic categories, hence the importance of adopting an appropriate approach to its management. While SDM in primary care is often applied to one-off treatment decisions, psychiatric medication is often taken on a long-term basis with implications across broad areas of well-being (7, 8, 9) . Thus medication management decisions are likely to be complex and the value of considering service users’ perspectives is particularly important (1, 6). These basic issues apply across diagnostic categories and types of medication.

Prescriber-user relationships are central in the matrix of factors that contribute to users’ decisions about medication (10, 11, 12). An observational study of psychiatric consultations found that users raised the topic of medication more often than psychiatrists who tended to avoid this issue and to control the flow of consultations (13).

The decision to take or not to take psychiatric medication are complex (11, 13). While many users find medication effective, difficulties of concordance are common (14). This is associated with adverse responses, long-term disabling side effects, over-prescribing and failure to follow national prescribing guidelines (11, 12). The frequent decision to discontinue medication may trigger a mental health crisis related to unsupported or inappropriate drug withdrawal . However, some users report being able to live well without medication, usually within a gradual withdrawal process and with psychosocial support, or within a therapeutic environment based on a participative mode of working between clinicians and users (15).

In the US and Denmark (18, 19) individualised and peer support programmes focused on developing users’ skills for effective contribution to the process of decision making about medication have been recently piloted , and motivational interviewing has been used for a similar purpose . In the case of Deegan this led to psychiatric consultations that were more efficient and focussed clients’ needs and concerns (18). However, these initiatives do not focus equally on preparing professionals and carers for their role in SDM.

This brief review highlights the need to develop UK-based SDM interventions for psychiatric medication that include service users, key professionals and carers, and to ensure that these are well evaluated in order to begin to develop a sound evidence base. This is of central importance within the context of the current policy emphasis on recovery, wellbeing and self management, and recent prescribing guidelines (9, 10, 20, 21).

Finally the open dialogue approach (22) illustrates the value of applying SDM to wider systems then the service user and the prescriber, to include families, neighbours and friends in working with people diagnosed as having Schizophrenia.

References

1. Schauer C, Everett A, del Vecchio P, Anderson L (2007) Promoting the value and practice of shared decision-making in mental health care. Psych. Rehab. Journal, 31: 54-61
2. Edwards A & Elwyn G (2009) Shared decision-making in healthcare: Achieving evidence-based patient choice. (2nd ed). OUP: Oxford
3. Adams, J, Drake, R, Wolford, G (2007) Shared decision-making preferences of people with severe mental illness. Psych. Services, 58: 1219-21
4. Hamann J, Cohen R, Leucht S, et al (2005) Do patients with schizophrenia wish to be involved in decisions about their medical treatment? Amer. J. Psychiatry, 162: 2382-4
5. Priebe S, McCabe, R et al (2007) Structured patient-clinician communication and 1-year outcome in community mental healthcare: cluster randomised controlled trial. Brit. J. Psych., 191: 420-6
6. Joosten E, DeFuentes-Merillas L, et al (2008) Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychotherapy and Psychosomatics, 77: 219–226
7. Read, J (2009) Psychiatric Drugs: Key Issues and Service Users Perspectives. Basingstoke: Palgrave Macmillan
8. Commission for Healthcare Audit and Inspection (2007) Medication Management in the NHS: Strategic Planning 2005-2008. London
9. NICE (2009) Medicine adherence: Involving patients in decision about prescribed medication and supporting adherence. London: NICE
10. Dept. of Health (2008) Medicines Management: Everybody’s Business. DH: London
11. Rogers A, Day J, et al (1998) The meaning and management of neuroleptic medication: A study of patients with a diagnosis of schizophrenia. Soc. Sci.& Med., 47: 1313-1323
12. Mackin P, Bishop D, et al (2007) Metabolic disease and cardiovascular risk to people treated with antipsychotics in the community. Brit. J. Psychiatry, 191: 23-29
13. Day J, Bentall R, Roberts C et al (2005) Attitudes towards antipsychotic medication: The impact of clinical variables and relationships with health professionals. Arch. Gen. Psychiatry, 62: 717-724
14. Seale C, Chaplin R, Lelloitt P, Quirk, A (2007) Antipsychotic medication, sedation and mental clouding: an observational study of psychiatric consultations. Soc. Sci. & Med., 65: 698-711
15. Cooper C, Bebbington P, et al (2007) Why people do not take their psychotropic drugs as prescribed: Results of the 2000 National Psychiatric Morbidity Survey. Acta Psych. Scand., 116: 47-53
16. Harrow M & Jobe T (2007) Factors involved in outcome and recovery in Schizophrenia patients not on antipsychotic medications: A 15-year multifollow-up study. J. Nerv. & Ment. Disease 195: 406-414
17. Calton T, Ferriter M, et al (2008) A systematic review of the Soterial paradigm for the treatment of people diagnosed with schizophrenia. Schiz. Bull., 34: 181–192
18. Deegan P, Rapp C, Holter M, Riefer M (2008) A program to support shared decision making in an outpatient psychiatric medication clinic. Psych. Services, 59: 603-605
19. Pederson M, Jansdorf R, Anseler N (2009) From Compliance to Concordance. Presentation at the Pavilion conference on the Mental Health Workforce, Sept 10th, Middlesex Univ., London
20. Graeber D, Moyers T et al (2003) A pilot study comparing motivational interviewing and an educational intervention in patients with schizophrenia and alcohol use disorder. Community Mental Health Journal, 39:189-202
21. Dept. of Health (2001) The Journey to Recovery: The Government’s Vision for Mental Health Care. DH, London
22.Dept. of Health (2009) New Horizons: Towards a shared vision for mental health: consultation paper. DH: London
23. Seikkula, J., Aaltonen,J., Alakar, B. (2006) Fiveyears experienceoffirstepisode nonaffective psychosis in open dialogue approach: Treamtent possibilitie,sfollow up outcomes andtwocasestudies. Psychotherapy Research, 16(2),214-228.

Aims

The proposed project aims to introduce and evaluate a shared decision making process and decision making aids to current psychiatric medication prescription and management practice. This project will focus on an intervention that enables users and providers to be active partners in the decision making process regarding psychiatric medication, drawing on programmes developed in the US and Denmark.

  1. Review internationally existing initiatives designed to encourage SDM in psychiatric medication management.
  2. Develop an intervention designed to promote SDM processes in relation to psychiatric medication management, which draws on the scoping review results and consultations with local relevant stakeholders.
  3. Deliver an intervention designed to promote SDM in psychiatric medication management in adult community psychiatric services to service users, psychiatrists and CPNs.
  4. Evaluate the impact of the intervention using a mixed-methods process and outcome-oriented approach.

Module 1: Scoping review (1-6 months)

Module 2: Intervention development (5-12 m) drawing on the review and consultations with key local stakeholders (service users, psychiatrists, community psychiatric nurses and care co-ordinators).

Module 3: Implementation (13-18 m) Participants will be service users (n=70), psychiatrists (n=10) and CPNs (n=12). Each group will be invited to a series of interactive group sessions, complemented by e-learning tools, individualised support for service users and follow-up contacts.

Module 4:Evaluation (13-36 m) A mixed-methods process and outcome-oriented approach within a before and after uncontrolled design will be used to assess: impact on decision-making relating to medication management and other associated benefits; feasibility, acceptability and participant experiences of the intervention; health economic benefits.

Overall Benefit

If our intervention is shown to have a beneficial impact locally, it will provide an evidence-based intervention with tangible benefits especially for service users, but also for professionals and organisations alike. It is hoped that service users will become more informed and actively involved in their medication management, which may in turn enhance therapeutic relationships and promote recovery. Professionals may gain better understandings of individual patients’ needs and concerns. Findings could inform a subsequent randomised trial to further evaluate the intervention. If successful, the intervention has the potential to generate cost savings. Delivery cost is small and is likely to be offset by significant benefits and associated cost savings.

 

DISCLAIMER

Care is taken to ensure that the information included in this website is accurate, but inaccuracies may nevertheless occur. If you discover any information you believe to be inaccurate please e-mail us : amy.li@anglia.ac.uk

Please note that the views presented on this site do not necessarily reflect those held by the ShIMME project.

The diversity within the partnership is also reflected in the range of views held by the active members of the project. They do not necessarily agree with each other on everything to be found in this website.
However, they share the strong belief in the value of SDM, and of working to achieve a comprehensive process of applying it within the context of psychiatric medication management.

There are a number of links from this website to sites maintained by other groups. These links are provided purely to assist you and in good faith. The presence of a link does not imply that the ShIMME project endorses or supports these groups, nor does the absence of a group imply that the ShIMME project does not support it.

The ShIMMe project staff cannot be held responsible for any damage or loss caused by any omission or inaccuracy in the material on this site, or in linked sites, however caused.

Advice given by project staff relates only to the process of shared decision making in psychiatric medication management, and should not be taken as advice to an individual as to whether to take or not to take any prescribed medication.

The ShIMMe staff is not responsible for any individual decision by a participant to its training programme related to their psychiatric medication management, and will not be liable for any consequences of such a decision.

Profesionals using the site need to use their own clinical judgement with regard to interpreting the information and making any decisions about applying it to the treatment of service users/ patients.

The ShIMME project has the copyright of the material it has developed which appears in this website.