Call our 24/7 advice line for health care professionals and families if you need support with symptom management and end of life care - 01284 766133.
Talk to us about your experience
Your experiences of dying, death and bereavement could help others. Would you be willing to speak to us?
St Nicholas Hospice Care is listening to people with experiences of life-limiting conditions in order to understand their needs.
In particular we would like to speak to those who have gone through this experience with no connection to hospice care.
Your story could help inspire the development of new services that will help us reach more people.
Please fill out your details below so that we can get in touch with you.
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Frequently asked questions
What is Listen Learn Adapt about?
The Hospice is listening to the needs of people who have experiences in dying, death and bereavement. If we truly understand what’s important to you, we can ensure our role supports the very best experiences in the final chapters of life.
How can I find out more about the Listen Learn Adapt process?
Please click here for further information and project updates.
Why is my experience important to you?
By listening to your story, we can understand what’s important and focus our services on needs.
The Hospice’s services are stretched, they cost more than we can fundraise and we currently do not reach everyone who needs support.
The Hospice must work differently, but to develop services which are right for the community we need to listen before coming up with solutions.
Why might I be approached?
You may be approached because you have an experience with a life limiting illness, dying, death or bereavement which will provide us with invaluable learning.
Your experience is not necessarily connected with St Nicholas Hospice Care.
What will happen if I take part?
By agreeing to take part in this interview you will be sharing your experiences with us; this will help us shape our services in the future.
We can arrange to meet you at the Hospice or we can come to your home, whichever is most convenient for you and where you might feel most at ease and able to talk without interruption.
We will ask you to sign a consent form of which you will have a copy. The consent form will enable you to express preferences on how we document the interview such as using video and audio recording.
The interview may take up to one hour.
Do I have to take part?
No. It is your choice to take part.
- Your participation in this interview is entirely voluntary.
- You are free to refuse to answer any question at any time.
- You are free to refuse to take part in any activity at any time.
- You are free to withdraw from the interview at any time.
Can I keep my story confidential?
You have the choice to keep your identity anonymous. We encourage you to share your identity to ensure a full understanding of your experience.
Do you have to film me?
You can use the consent form to indicate your preferences on the following:
1. I give consent to be videotaped during this study
2. I would prefer to keep my identity confidential (video only of hands, avoiding face)
3. I am not comfortable with any video
Where will my story be kept?
The material recorded from your interview will be stored securely on St Nicholas Hospice Care’s servers which are located at its premises in Bury St Edmunds.
What will I be asked to provide consent for?
We will ask if we can share your experiences with service design specialists Livework, who are working with the Hospice on the service development.
You will be asked to provide consent for the Hospice to use information and quotations from your interview in reports and materials to communicate the project’s progress.
You will be asked to provide consent for files resulting from this study to be used for transcripts, use of quotes, and images to be disseminated in the form of published or public material on the web or paper release.
How will my story be used?
Your interview will be shared with Livework, a service design company which specialises in developing services that respond to the needs of the community.
Livework have a proven track record and their knowledge and expertise will ensure what’s important to you inspires how our services are developed.
What do I do if I am interested in taking part and hearing more about the Hospice’s Listen Learn Adapt process?
Please contact the Project Support Team:
Luzma Grayston, Project Support Officer
Debra Garside, Project Lead, Clinical Services Director
Emma Jelley, PA to Clinical Services Director
Phone: 01284 766133
Address: St Nicholas Hospice Care, Hardwick Lane, Bury St Edmunds, Suffolk, IP33 2QY
What if I need to speak to someone about support?
Should you feel upset or identify a need for support as a result of taking part in this process you can access support through the Hospice’s First Contact Team:
Phone: 01284 766133
If you wish to make a complaint or raise concerns about any aspect of this process, you can contact the PA to the Chief Executive Officer on 01284 715571. Alternatively you can complete an online form at www.stnicholashospice.org.uk/complaints-and-feedback