You Said, We Did: Mental Health and wellbeing consultation workshop

Mental Health and wellbeing consultation workshop: a neurodevelopmental lens on Foundations for our Future 

Parent carers have told us that their children and young people with neurodevelopmental conditions (NDCs) face an extra level of challenge accessing emotional wellbeing and mental health services. In recognition of this, PaCC organised a neurodevelopmental mental health consultation workshop. Over 30 parent carers from across Sussex joined Sussex-wide health leads at the online event, mapping their experiences onto the “Thrive” framework for emotional wellbeing and mental health services.  Colleagues from East and West Sussex parent carer forums collaborated and helped facilitate: it was fantastic to have the strength of all our voices in one ‘room’.  

For as far back as I can remember, parent carers have been telling us how difficult it is to get the right emotional wellbeing and mental health support for their children and young people with NDCs. This has been highlighted by PaCC in a number of reports (2014, 2016 and 2019) based on feedback from parent carers about their own and their children’s mental health and wellbeing, and most recently in the mASCot complaint.  

Many issues have been consistently raised, ranging from parents not feeling heard to the need for staff training and adaptation of therapies for young people with neurodevelopmental conditions.  And the need for ‘Clear pathways leading to mental health support for autistic children and young people. Also, actual mental health support for autistic people’ (parent carer quote, PaCC Mental Health report, 2019).  

Pre-pandemic, the information from the PaCC 2019 Mental Health report fed into a wide-ranging review of emotional wellbeing and mental health services for children and young people. Feedback from this Sussex-wide review was used to write the Foundations for our Future (FFoF) report on emotional wellbeing and mental health services for children and young people. Recommendations from the FFoF report are now being implemented under the direction of Simone Button (programme director FFoF) who joined us at the workshop, alongside mental health commissioners from across Sussex.  

At the workshop, we heard again that it is hard for our young people to access mental health services, the need for ND-specific interventions, as well as positive feedback about peer support networks. But this time parents were inputting into current work aiming to improve access for all children and young people. Hopefully we will start to see much needed change. 

Thank you to everyone who attended. I really think the message is starting to get through. Our children have emotional wellbeing and mental health needs too!  

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