In It Together
‘In It Together’ was a group of parents and carers of children and young people with a wide range of disabilities and special needs which worked closely with service providers and commissioners to develop and maintain accessible, high quality services for all children and young people with additional needs and disabilities. The group had around 500 members.
Healthwatch Northumberland had been involved with the forum for a number of years and when we learnt from Northumberland CCG that the number of referrals for Autism Spectrum Disorder (ASD) were increasing rapidly but with relatively few meeting the criteria for an assessment and/or obtaining a subsequent ASD/ADHD diagnosis, it was decided to review the feedback raised by In It Together members.
We identified a number of reoccurring themes and concerns raised at the Parent Carer Professional Forum. In addition to identifying themes relating to the experiences of both parents and children and young people, it had been noted a number of times that parents and carers were concerned by the lack of representation from a health commissioning perspective at the meetings. As a result, the group felt that sometimes its strategic influence was lost.
With this in mind, Healthwatch Northumberland set out to ensure that the group’s concerns were heard at the right level. We facilitated and attended a meeting with the Chair of In It Together and the commissioning lead for mental health and learning disability services from Northumberland CCG to discuss and consider how to address each of the themes identified.
The outcomes of this meeting were:
Whilst the commissioners and providers were aware of a number of the issues raised and were already considering how to address them, the group identifying the themes was helpful and they will be shared with the Emotional Health and Wellbeing Board Strategy Group.
A number of the points identified fit into the Local Transformation Plan (2015-20) under the THRIVE model components (Coping, Getting Help, Getting More Help and Getting Risk Support) and were taken forward.
It was acknowledged that In It Together had a wealth of information and experience to contribute and the group now has an open invitation to attend the EHWB Strategy Group meetings.
The Children and Young People Service and the CCG were to review invitations to all meetings, to prioritise appropriate attendance and how best to share information.