PARTANE – Participatory Design of a Systematic Review on Tapering Neuroleptics in People with Schizophrenia-related disorders – paid opportunity to join research workshop
Survivor Researcher Network C.I.C.is working with a German university medical school, Medizinische Hochschule Brandenburg (MHB), to organise one of three workshops contributing to this project, called PARTANE, which aims to develop the study protocol for a subsequent systematic participatory review. ( A Systematic Review is a type of research study which collects and analyses findings from all the research published in the chosen area.)
We are looking for 10-14 people, living near London, with experience of taking neuroleptics and attempting reduction or withdrawal to take part in a one day workshop on Wednesday 20 September in Central London. Registration will be from 09.30 for a prompt 10.00 start, and the workshop will finish at 18.00 (6pm).
The deadline for expressions of interest in this has now passed. More than 14 people responded, and we have offered all the places.
MHB Information on the study and workshop
Brief description of the PARTANE study
The treatment of people experiencing psychosis relies heavily on pharmacological treatment with neuroleptics (”antipsychotics”), both in acute phases and in longer-term treatment. However, neuroleptics also have distressing adverse effects. As a result, many users wish to reduce or even discontinue the medication.
Currently, there is little scientific work on,
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- how to reduce or discontinue neuroleptics in a safe way;
- what treatment and living conditions enable successful discontinuation or reduction;
- for which people is a discontinuation or reduction process successful; and
- which conditions are necessary for this success.
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The goal of our study is to prepare a participatory review of existing evidence on these questions. The research project will be conducted by researchers with and without experience of discontinuation of neuroleptics and will be developed with the participation of experts and scientists with and without experience of discontinuation, as well as stakeholders and members of e.g. self-help groups.
The study is funded by the German Federal Ministry of Education and Research. The study applicant and co-applicants are Prof Dr Sebastian von Peter, Ute Krämer MSc and Prof Dr Oliver Zolk.
Workshop invitation
For this London workshop on the PARTANE project, we are looking for people who:
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- have experience with taking neuroleptics (”antipsychotics”), and
- are trying to stop or reduce neuroleptics, or have had good and/or bad experiences with stopping or reducing them, and
- desirably have experience in sharing discontinuation or reduction experiences (e.g., in self-help, self-advocacy).We are aiming for 10-14 participants.
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The workshop will last approximately 8 hours (10.00 – 18.00) with many breaks. SRN C.I.C. will reimburse your travel expenses, and the study team will provide compensation of £200 for participation. Lunch and refreshments will be provided.
A detailed schedule for the workshop is in progress, the main topics will be:
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- an introduction to the topic and the state of research on discontinuing or reducing neuroleptics.
- a discussion of experiences, desires and fears regarding a discontinuation or reduction of neuroleptics.
- a collaborative discussion and development of relevant aspects of the research questions and possible goals in a participatory review process.
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For this workshop we are interested in hearing your expertise and expectations on the topic of tapering neuroleptic medication, for the purpose of designing and planning the future review study. Personal information about your own medical history is not collected. Further information on how we use and store information can be found in our Data Protection Statement on the project PARTANE.
How to apply to join the workshop
Survivor Researcher Network C.I.C. are organising recruitment of participants for the workshop.
If you would like to apply to join the workshop, please download and complete our Expression of Interest form, and then send it to Stephen.jeffreys@survivorresearcher.net as soon as possible and no later than 31 August 2023
The Study is aiming for a diverse group in relation to age, gender, educational, professional and ethnic background, duration of usage of antipsychotics, and the form contains questions to assist with this.
We also ask you to indicate your anticipated travel expenses to ensure that we will be able to reimburse you from our limited budget for expenses. With our limited travel expenses budget and the 09.30 – 18.00 workshop timing, we anticipate considering expressions of interest from people located within about 90 minutes travelling time and 70 miles of the central London location.
All the information that SRN collects from the application form will be destroyed after the workshop, other than as required to process travel expense claims, and contact you about further opportunities to be involved in the project. For selection purposes we may share anonymised information in your application form with the study team. The PARTANE study team may ask those attending the workshop for personal information in accordance with their data protection statement.
If you would like any further information or have questions about the expression of interest form, please contact stephen.jeffreys@survivorresearcher.net
