SHSCT Personalised Care Experience - Living With and Beyond Cancer

Overview

The Southern Health and Social Care Trust (SHSCT) in partnership with Macmillan Cancer Support are seeking to gather information from people with lived experience of cancer, to actively shape and inform what supportive “personalised care” should look like throughout the cancer journey.

There are increasing numbers of people living with and beyond cancer, all with their own specific needs.  It is therefore essential that support, information and services offered to people affected by cancer is personalised and tailored to ensure that the experience of cancer is as positive as possible and that the best outcomes are achieved.

Personalised care helps people living with and beyond cancer (PWBC) to take an active and empowered role, in the way their care is planned and delivered, with interventions and care tailored around the things that matter most to them.

Why your views matter

The information collated from the survey will be used to coproduce personalised care models that will best support people’s needs, and concerns throughout the cancer journey, with a particular emphasis following treatment.  There are considerable opportunities to improve both short and long-term quality of life outcomes, following treatment. 

The survey will explore personal experiences of accessing and navigating non-clinical cancer support throughout the cancer journey.   (Non-clinical refers to the physical, emotional, practical, spiritual and social needs/concerns).   This survey aims to identify what the needs/concerns are at various stages of the cancer journey; how and if these needs/concerns were supported; highlight unmet need and seek views on how to improve experiences of personalised care particularly after treatment as people transition to living with or beyond cancer.

It is vital that those with lived experience of cancer are involved to actively shape and inform what personalised care in the Southern Health & Social Care Trust, should look like in the future. 

The Survey will take approximately 15 minutes to complete.

How this data will be used?

The data collected from this survey will be used to enable the Southern Health and Social Care Trust to inform, co-design and test models of personalised care to improve the care, experience and outcomes for people affected by cancer.  While the work is undertaken in partnership with Macmillan the information will be retained in and only used by SHSCT for the stated purposes.

Your rights

Taking part in the survey is voluntary. Completing the survey gives you an opportunity to provide feedback on your cancer care experience.

Personal Data

All responses in this survey will be confidential and anonymised.  No personal identifiable data will be collated in this survey unless you are interested in participating in future engagement activities or you would like to be kept up to date with the findings of the survey.  If the latter is the case, then any contact details you provide, will only be used for communicating with you, based on your preference(s) that you indicate at end of the survey. 

The information you provide will be held securely and in accordance with data protection legislation and will only be retained for as long as necessary. Any personal contact details that you provide for the purposes stated in the privacy notice will be held for a period of 1 year after which they will be permanently deleted.  Only authorised staff will have access to any personal information provided and they are obliged to respect its confidentiality.

Access to your Information

Under data protection law you have the right to ask for a copy of the information we hold about you.   If you want to request a copy of your information or you choose to share your personal information for the purposes stated and later wish to have your personal details removed please contact: 

Caroline Hillen

Macmillan Personalised Care Project Officer

St. Lukes Hospital

Armagh

BT61 7NQ

Tel: 028 3756 62227