Improved support for parents and families of newly diagnosed children with vision impairment was unveiled during the British & Irish Paediatric Opthamology & Strabisimus Association (BIPOSA) conference earlier today (4 October 2019).
Starting Point, a leaflet that can be given to families at the point of diagnosis, has been redesigned to help signpost parents to appropriate resources and professionals, while encouraging early intervention in order to improve outcomes for children. It now includes weblinks to online information such as the newly launched sightadvicefaq.org.uk, which pulls together content from across the sight loss sector and answers questions such as: ‘How will my baby’s diagnosis affect development?’
“We wanted a map of the next few years. We really wanted to know what do we do next”
The resource, which was first introduced in 2016, was re-launched by Vision UK, the UK’s independent partnership organisation leading collaboration in eye health and sight loss which brings together the major organisations supporting people with vision impairment. Representative organisations collaborated in order to update the leaflet with the latest information and advice.
Sarah Holton, Assistant UK Lead for Children, Young People and Families at RNIB, said: “Finding out that your child has a vision impairment can be a difficult and emotional experience. In fast-paced clinic settings it can be hard for families to retain important information or ask questions about their child’s situation.
“Starting Point is a vital resource that clinicians can give to affected families at the critical point of diagnosis – so that they can read through it in their own time and better understand crucial aspects of their child’s care and development. It’s especially important that parents understand where they can go for further support and how crucial early-intervention in sensory impairment can be in improving outcomes for their child.”
Tools like the Developmental Journal for babies and young children with visual impairment (DJVI) have now been proven as effective support. Earlier this year, research published in Developmental Medicine and Child Neurology , revealed improvements for babies and young children whose parents were supported using the DJVI. A set of developmental monitoring and guidance materials, the DJVI is designed to be used through a partnership of local practitioners and parents to help children through everyday interactions and tasks at home. Children supported using the DJVI were found to have improved outcomes in a range of developmental and behavioural measures than children receiving other forms of support. It has also been proven to reduce parental stress.
Ms Holton continued: “This research highlights why it is essential that families are given access to the right support as soon as possible. Starting Point gives a clear route into the ongoing advice, intervention and support services that children and their parents need.”
Starting Point leaflets will be available, on request or electronically, to paediatric ophthalmologists, orthoptists and optometrists working in an NHS setting. To order this free resource for your clinic or practice, please email firstname.lastname@example.org. It is also available to download at https://www.visionuk.org.uk/starting-point-leaflet/
About Vision UK
Vision UK is an independent umbrella organisation that works for the benefit of blind and partially sighted people, their communities and the general population, including those at risk of sight loss. They work with national and regional organisations in the eye health and sight loss sector, including BIOS but also the Royal National Institute of Blind People (RNIB), the Royal Society for Blind Children (RSBC), Guide Dogs, Look and Thomas Pocklington Trust.