Report of the long term conditions, disability and palliative care subgroup
The Children and young people’s health outcomes forum has now published their final report. A number of points of interest, which have been included in the report and were raised by CHF in our response were:
- They push for greater collection of data in line with our response about those with LT health conditions including their wellbeing, pupil absence, development outcomes at 2-21 years, rates of physical activity and bullying etc
- The need for focus on early and prompt diagnosis and to respond to parents concerns – they recommend data collected to assess time taken for diagnosis after first presentation to NHS with condition.
- Greater focus on young peoples transition to adult services
- Greater provision of information for patients and parents
- Better communication – written and verbal with family and ensuring young people’s voices are considered and included
- A statement on the need to drive care closer to home and better incentivize this