ACCESSCareFor LGBT+ (lesbian, gay, bisexual, trans +)

people facing serious illness, advanced illness and bereavement, and those close to them

Patient and Public Involvement Contributor

Thank very much for your interest in joining the ACCESSCare research stream as a patient, family, carer or public representative. This document provides you with further information about the Cicely Saunders Institute where the ACCESSCare team are based, the project and your role in the project.

Who are we?The Cicely Saunders Institute is the first purpose-built institute for research into palliative care and rehabilitation. It opened in May 2010 as the result of a partnership between the King’s College London and the charity Cicely Saunders International. The Institute brings together academics, healthcare professionals, community organisations, patients and families in one centre and acts as the hub for a network of international research. We aim to pioneer the very best in palliative care and rehabilitation by integrating cutting-edge research, skilled multi-professional care, and innovation in engagement and education.

What is the purpose of this role?When developing and doing research, it is important to us that we understand patients’, families’ and carers’ needs, views, and priorities to ensure that the research is in the best interests of patients and their families. Also, to help our research be as useful, accessible and meaningful as possible. For that reason, we want to invite people with experience of serious illness, either themselves or in a caring capacity, and/or partner bereavement to act as collaborators on our research projects, ACCESSCare B & C.

What are the projects?ACCESSCare C aims to identify preferences of LGBT+ people with serious illness and their caregivers with respect to exploring and sharing information regarding sexual orientation and gender history/gender identity with health and social care professionals. We want to understand these experiences to develop and deliver free, evidence-based guidance for clinicians and educators, to improve communication and information recording. We will also be talking with health and social care professionals to understand their existing practices. We use the “+” (in LGBT+) to be inclusive of anyone who considers themselves to have a minority sexual orientation, gender identity/history, or biological sex. We define serious illness as a condition that may shorten life, negatively impacts on quality of life and daily function, and/or is burdensome in symptoms, treatments or caregiver stress.

ACCESSCare B aims to understand whether there are different bereavement needs and outcomes for LGB and heterosexual people who have lost a partner and how care may need to

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personalised to meet these. The findings will be embedded into training for palliative care and used to inform support resources for those facing bereavement. As a Patient and Public Involvement Contributor, you would be working in partnership with other patients, informal carers, bereaved partners, members of the public and researchers.

How can you help? We appreciate that due to other commitments that people may not be able to do everything, but below we will agree the tasks you wish to take part in. Please note, no prior knowledge or understanding of research is required.

Share your experiences of receiving care for a serious illness, and/or caring for someone with serious illness.

Share your experiences of bereavement of a partner or spouse.

Ensure that the project is responsive to views of LGBT+ patients, their carers (e.g., partners, families and friends) and/or bereaved partners.

Offer advice on how best to involve LGBT+ people with serious illness, their carers and/or bereaved partners in our research.

Support other patient and public involvement contributors.

Help to set research priorities for subsequent projects.

Attend project meetings and events involving the researchers, invited academics and lay members.

Provide critical feedback on study materials, such as patient information sheets, and the professional guidance.

Help ensure that the research is carried out in an ethical and respectful way, and has the highest possible impact for LGBT+ patients and their carers.

Support dissemination of findings through development of a dissemination plan to encompass local, regional, national and international dissemination (e.g. reviewing the lay summary of research etc.)

Develop skills through support

What do we require from you? Willingness and availability to attend meetings/events (reasonable travel costs will be

reimbursed).

Use your skills and abilities to actively contribute to the project/team meetings, listen to others, and tell your story as you feel able.

Work well with others in teams, networks and organisations.

Try to take an objective view, seeing issues from different perspectives.

Question information and explanations supplied by others (e.g. researchers) when they are not clear.

Active participation and engagement in disseminating findings at events, and to a non-specialist audience.

Respect confidentiality requirements and declare any conflicts of interest.2

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When and where will we meet?Meetings will be held at the Cicely Saunders Institute, on the King’s College Hospital Campus, Denmark Hill, London SE5 7QS. For more details on how to find us, please visit: http://www.csi.kcl.ac.uk/travel-information.html. Although ideally meetings will be face-to-face, we can arrange for you to join meetings via Skype or conference call if it is difficult to attend. An agenda and any documents will be circulated for review prior to meetings.

Flexible involvement for up to 12 months.

Confidentiality and Conflict of Interest

As a representative of the Cicely Saunders Institute you are asked not to share confidential information you may have received as a result of your position.

As a representative you will be required to disclose any involvement you may have with other organisations, government bodies or corporate/commercial interests, which could result in a conflict of interest of the work conducted by the Institute.

How can we help you? What support can the research team and the Cicely Saunders Institute provide?

We will provide you with guidance each time we request your assistance with a phase of a project – of course your ideas and suggestions beyond this are also welcome! We also hold three patient and public involvement workshops a year for research staff and lay members involved in research. Patient and public representatives of this project are welcome to attend these workshops, and other events at the Institute, such as our Open Seminar series. You can also be linked to the network of other patient, family, carer and public members via our Public Involvement Forum: http://www.csipublicinvolvement.co.uk/.

The next patient and public involvement workshop will be held at the Institute on 20th November, 2018. We encourage patient and public representatives working on projects in the ACCESSCare research stream to attend if possible.

What about payment and expenses?

The representative role is voluntary but support will be provided, and all reasonable travel expenses will be reimbursed. If attending formal meetings, you will receive a payment for your time, expertise and involvement according to the INVOLVE guidelines (http://www.invo.org.uk/posttypepublication/payment-for-involvement/).

Patient and Public Involvement Contributors will be reimbursed for their time at a rate of £19.40 per hour

Please note that reimbursements for time should be declared for tax purposes. If you have concerns over how this may affect any benefits you are receiving, please seek advice from INVOLVE’s confidential Benefits Advice Service: http://www.invo.org.uk/benefits-advice-service-for-involvement-for-members-of-the-public/. For work at the Cicely Saunders Institute, you can specify that you are working as part of the NIHR South London CLAHRC.

We can then work with you to adjust any payments accordingly, if need be.

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What if I have questions?If you have any questions about the project or your role or for any more information about the advertised opportunity, please contact Dr Debbie Braybrook by email: debbie.braybrook@kcl.ac.uk or telephone: 0207 848 5627.

Additional Resources

ACCESSCare Website: www.csi.kcl.ac.uk/accesscare

For further information about the projects carried out at the CSI: http://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/research/index.aspx

Cicely Saunders Institute Patient and Public Involvement: http://www.csi.kcl.ac.uk/ppi.html

Cicely Saunders Institute Public Involvement Forum: http://www.csipublicinvolvement.co.uk/

INVOLVE Website: http://www.invo.org.uk

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This document presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB)

Programme (Grant Reference Number PB-PG-0816-20001). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the

Department of Health and Social Care.