ORCHID Annual Report 2023 - Flipbook - Page 13
networks and ensure an inclusive approach to working with children and
young people with complex disabilities/health needs and their families.
The Hardest Transition: https://youtu.be/lPeeyf265r8
Why is it a fight: https://youtu.be/hqghf7auazM
A Better Way Is Possible: https://youtu.be/2vUTdK3HoKU
The Seen and Be Heard Study
Every year, like other children, children with Learning
Disabilities and/or who are Autistic receive a cancer diagnosis
and start a journey of cancer care. Some children with
Learning Disabilities, such as those with Down Syndrome, are
more likely to get certain cancers, including leukaemia. We
know that children with Learning Disabilities or who are
autistic can find hospitals particularly challenging, being with
unfamiliar people in unfamiliar surroundings. Undergoing
procedures and investigations can make them very anxious,
potentially causing them to self-harm and harm others. They
may not be able to communicate their needs and may have
limited ability to understand complex information.
However, there has been no research to understand how such complexities
impact aspects of cancer care including receiving a cancer diagnosis,
undergoing chemotherapy or radiotherapy, understanding and managing
symptoms, and receiving palliative care.
We will observe the cancer journey of children with and without
learning disabilities or who are autistic and their families to
understand their needs and experiences. This will include
interviews with children, siblings and parents using creative
methods, ensuring no-one is excluded. We will identify what is
provided nationally to these patients by surveying children's
cancer treatment centres in England and explore staff views of
caring for them through an online survey and interviews. We will
also review medical records to compare symptoms and
outcomes.
Our findings will inform how cancer care is provided, ensuring resources are
allocated fairly and appropriately to those who need it, when they need it, with
the potential for fewer unmet needs. We anticipate improvements in children'
and families' experiences of and satisfaction with care, and their trust and
confidence in staff, with a reduction in adverse health outcomes and long-term
emotional damage from care not being adjusted to meet individual needs.
