The Patients and Families Voice

PATIENT FAMILY Diagnosis Antenatal Post Natal Throughout life. Decision Making and Pathway Planning Treatment Surgical, Interventional, Medical Community Care and Treatment End of Life Care Support with other areas of treatment and care Transition of Care Support with Lifestyle Challenges JOINED UP

“Every child’s life is a journey, our children have more of a rollercoaster, rocky road, mountain to climb.”

What have patients and parents told us that they want from their cardiac service. 1.Skill and Experience swiftly available. 2.Excellent Communication. 3.Clear, Unbias Pathways of Treatment and Care. 4.Honesty. 5.Good, Accessible and Informed Emergency Care. 6.Good Hospital Facilities. 7.Support with Transport. 8.Joined Up Services - Knowledge of a child’s needs close to home. 9.A Caring Approach. 10.Caring and Informative Bereavement Services from the Cardiac Team. “Up to date and well informed expert knowledge “ “I want them to listen to parents and communicate with us regularly and effectively.” “Trustworthy” “Expertise and knowledge about my child's case “ “The ability to inform us as parents about our child's condition and any changes that may occur” “I feel comforted that it is a team of professionals that make decisions about what is best for my daughter not just one individual.” “Joined up services... ha ha!!” “I was put under quite a lot of pressure to terminate the pregnancy.” “At the hospital we are a number that is filed away as a statistic.”

“ Fear that Surgery will go wrong leaving us with a 'different' daughter from the one we know and love” “Fear that I will never be normal, have a family, live a full life.” “Fear that he would die at any moment.” “Joined up services... ha ha!! I just hope that there is an NHS to carry on treating my child safely & with continuing advances in surgery to keep him alive.” “ Fear that my child who has learning difficulties will be treated differently in adult care.” “ Always changing doctors means no one knows my child.” “ We understand that the team are busy but we would like our child to be remembered too.” “ Fear that I do not understand my lifestyle challenge.”

Thank you