Since December last year, one of our fantastic PaCC parents has been working with Dr Soluchi Amobi, the neurodisability lead at Seaside View, on reviewing the pathway for families who have children with physical neurodisability. The parent has a child with cerebral palsy and the first stage of this consultation has been getting feedback about the parent carer’ experiences of the service provided by the Child Development Centre.
One of the issues raised by the parent was the lack of a clear pathway/process for transition into adult services and consideration for more targeted support at key milestones in a young person’s life, for example transition to secondary school, college, or into independent living. It was identified by the parent that young people would benefit from a key professional/link worker to help them and their families with the process, in line with NICE guidance Transition from children’s to adults’ services | Search results | NICE.
The parent fed back the importance of working with other services, including Education and Social Care, to ensure that vulnerable families have access to appropriate support. The parent felt that multidisciplinary team (MDT) reviews were helpful to share the most up to date knowledge between professionals and parents.
Other points highlighted by the parent were:
- Greater clarity about the services provided, frequency of appointments and therapy.
- Resources that give parents more information about conditions, management techniques, sensory approaches etc. such as through educational videos or other media.
- Sharing the evidence-base around treatment programmes, e.g. having more intense therapy at certain points in a child or young person’s life. This could include using virtual group treatment sessions; a good example of this is the recent upper limb physio programme which has been running weekly on Zoom.
- Ensuring equipment reviews are completed by Occupational Therapists preferably on an annual basis. This is particularly relevant when young people are moving into adult services where they may benefit from a review of all their equipment prior to transitioning.
- Consideration of a peer support network for young people by way of a forum that they can access through the wider interdisciplinary team.
- The potential for more psychological support to be available for parents and young people.
The work is ongoing and we will update you when the pathway has been agreed.
Dr Amobi says, “We are very happy to be working with parent carers to improve the physical neurodisability pathway at Seaside View. We are grateful for the feedback received and will use this to look at how best we can work within the bounds of our current resources and, importantly, with other services and professionals to build on our multidisciplinary pathway, to achieve better quality, efficiency and outcomes for children and families. As we continue to work through the pressures brought about by the Covid-19 pandemic, we will keep you updated on our progress.’