Learning from Families: Service Insights Review of Children and Young People’s (CYP) Palliative Care in South Yorkshire
Survey for families currently accessing palliative care services.
The South Yorkshire Children and Young People's Alliance is inviting families to take part in a new project to help us understand what it is like to access palliative care for children and young people across Sheffield, Rotherham, Barnsley and Doncaster.
We want to learn directly from the experiences of parents and carers who have been supported by the local hospital, community, or palliative care teams. Your feedback will help us understand what is working well, what could be improved, and how services can better meet the needs of children and families in the future.
Why are we doing this?
South Yorkshire has been developing a shared system model for children’s palliative care. To understand how well this model is working, it is essential that we listen to the people who use these services every day: families.
Data and service mapping can tell us what is happening - but only families can tell us how it feels. Your insight will help identify strengths, gaps, and opportunities for improvement across the whole region.
Who can take part?
Families of babies, children, and young people who have been receiving palliative care since 2019.
This includes families supported by:
- The Sheffield Specialist Palliative Care Team
- Hospital palliative care teams
- Community nursing teams
- Local palliative lead consultants
- Hospices (where relevant)
Please note: Families accessing oncology-only pathways in Sheffield through Paediatric Oncology Outreach Nurse Specialist (POONS) services will not be included in this project, as this pathway sits outside the South Yorkshire Palliative Care model. However, oncology families living in Barnsley, Doncaster, or Rotherham will be included, as their local teams are possibly directly involved in providing palliative care support.
Involving children and young people
This project is designed mainly to gather feedback from families and carers, but we recognise that some children and young people may also wish to share their views.
Not all children and young people will be able or feel ready to take part, and parents/carers are best placed to decide what is appropriate for their child.
If your child or young person would like to share a story as part of the project, this can be supported and guided by their parent/carer. Please let the project team know if a story has been created in this way.
Parents/carers are welcome to complete the survey with their child if they choose.
How can families get involved?
Complete the Family Experience Survey
Following a call from a local palliative keyworker and providing your consent you will receive a digital Microsoft Forms survey tailored to families who are currently accessing services.
The survey asks about:
- Quality of care and symptom management
- Support for your child and family
- Communication and involvement in decisions
- Access to services and coordination between teams
- Experiences of referrals, including hospice provision
Families can skip any question or stop at any time. A paper copy is available, please ask your key worker for this or contact: charlotte.clarke36@nhs.net
Your participation will not affect any current or future care you receive.
If you think you are eligible but haven't received information about the survey, please contact charlotte.clarke36@nhs.net.
Share your story
As part of this project, we would like to offer families the chance to share their experiences in their own words. This storytelling option sits alongside the main survey and gives you space to tell your story in a way that feels right for you.
We know that numbers and tick boxes can’t always capture what really matters. Your story helps us understand what works well, what could be better, and what might need to change in the future. This is not a counselling or therapy service – it’s an opportunity to share your experiences so that we can learn from them.
Your story, your way:
You can choose to share your story in whichever format feels most comfortable:
- Written story: Write about your experience in your own time and words – as much or as little as you wish.
- Creative format: Some families prefer to share a poem, letter, or artwork with a short explanation.
- Audio recording: You may record your story using your phone or another device and send it to us securely.
- Prompt guide: If you’d like a starting point, you can use prompts such as:
- Tell us about your child and what matters most to them.
- What is your experience of care like – what helps, what doesn’t?
- What moments stand out to you (positive or difficult)?
- If you could change one thing, what would it be?
Your choice and your safety
Sharing your story is completely voluntary. You are in control of what you share and can stop at any time. If you find that writing or talking about your experience feels overwhelming, please take a break or choose not to continue.
Consent and ownership
Your story belongs to you. If you choose to share it, we will ask for your consent to use it to help improve services and learning across South Yorkshire. You can decide how much or how little of your story can be shared in reports, workshops, or learning events. Nothing identifying will ever be published or shared without your permission.
How stories will be used
Stories will be reviewed alongside survey results to help us understand families’ experiences more deeply. We may include short anonymised quotes in reports or learning sessions to bring your experiences to life, but we will take great care to protect your identity and your child’s.
Thank you for considering sharing your story. Your words can make a real difference in shaping better care for children, young people, and families in the future.
If you would like to participate in the story telling option of this family insight work please contact charlotte.clarke36@nhs.net directly, or get in touch with your local palliative team who can advocate and support you to do so.
Specialist listening and emotional support for palliative care
If you are supporting a child or young person with a life-limiting condition, or working closely with families in palliative and end-of-life care, you may find it helpful to access specialist listening and emotional support.
Together for Short Lives offers free, confidential listening support specifically tailored to the experiences of those affected by children’s palliative care. Their service is delivered by trained listeners who understand the unique emotional challenges of caring for, supporting, or working with children and young people with life-limiting or life-threatening conditions.
This support is:
- Specifically focused on children’s palliative and end-of-life care
- Available for parents, carers, and professionals
- A safe space to talk, reflect, and be listened to without judgement
- Delivered by people who understand the complexities of this work
You can find more information and access the service here:
https://www.togetherforshortlives.org.uk/get-support/emotional-and-listening-support/listening-support/
Samaritans
24-hour listening service if you need someone to talk to
📞 116 123 | 💻 www.samaritans.org.uk
Healthier Together - South Yorkshire & Bassetlaw
Created by local NHS health professionals, Healthier Together offers clear, practical information for parents and carers on supporting babies, children, and young people with long-term or complex health needs.
The site also includes a dedicated section on palliative care and links to wider support and advice across the region.
Together for Short Lives
National support line and peer community for families of children with life-limiting conditions.
📞 0808 8088 100 💻 www.togetherforshortlives.org.uk
You can also speak with your GP for advice or referral to local counselling or mental health services.
This survey is not part of a complaints process, and any issues highlighted may not be picked up directly. If you do wish to make a complaint, please read the guidance below:
Contact the service directly
If your concern relates to a specific service (for example, hospital, hospice, or community team), you can raise it directly with the team who provided care. Often, issues can be resolved quickly through discussion with the local manager or patient experience lead.
NHS Patient Advice and Liaison Service (PALS)
PALS provides free, confidential advice and support to patients, families, and carers. They can help you resolve concerns informally or guide you through the formal NHS complaints process.
You can contact PALS for your area by using this search.
You can find more information about NHS complaints here.
We are committed to protecting your personal information. All responses to surveys are handled in line with the UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018.
The information you provide will be used only for the purpose of improving palliative and end-of-life care services.
Survey responses are anonymised before analysis and will not be used to identify you or your family. Please note that if you choose to share names or other identifiable details, there is a small possibility you may be identifiable due to the very small number of children and young people in South Yorkshire who require palliative care. However, anything shared beyond the project team will be fully anonymised, and no personal details will ever be included in any wider reports or findings.
Once you submit the survey, your response cannot be withdrawn. This is because we do not collect identifiable information and cannot link responses back to individuals.
Your data will be stored securely and will not be shared with third parties outside the project team, except where required by law.
If you have any questions about how your data is used or wish to learn more about your data rights, please contact the project lead charlotte.clarke36@nhs.net.
