Report of the long term conditions, disability and palliative care subgroup

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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