16 July 2025
The pathway sets out the care and support that should be provided for young people with sight loss, from diagnosis to living well and eventually transitioning to adult services.
It is a “crucial part of the jigsaw to ensure children and young people and their families can get the support that they need,” Eleanor Briggs, head of policy, public affairs and campaigns at Guide Dogs, said.
Alex Clarke, senior policy, public affairs and campaigns manager at Guide Dogs, called the new pathway a “vital roadmap” for families trying to navigate the system.
It was created alongside partners from across the eye care sector, and took two years to develop.
Stakeholders involved in the pathway’s development included young people and their families, commissioners, and more than 20 sector organisations, Briggs said.
The need for a new sight loss pathway
In 2021, Guide Dogs’ Creating the Future commission set about exploring the experiences of children and young people with sight loss, with the view to creating better outcomes.
Inconsistency in support across England was identified, Clarke said – including a variance of between 3% and 47% of children and young people with sight loss receiving habilitation support in areas that offered it.
The biggest concern for Guide Dogs was confusion from parents, and the pressure that was being put on them whilst trying to navigate the system, Clarke explained.
He noted that parents needed information at the right time, when they were in a position to fully understand it.
A universal model pathway was the main recommendation of the commission, Clarke told attendees at the pathway’s launch event.
He added that the published pathway has been developed after workshops and interviews with key voices in the eye care sector, including opticians and ophthalmologists, as well as teachers, charities, children and parents.
From initial appointment to transition to adult services
The pathway is made up of four stages, laying out the care and support that should be expected from the initial appointment to the eventual transition to adult sight loss services.
The first stage highlights what families should expect when they raise concerns about their child’s vision, which is likely to involve appointments with and support from a primary eye care professional.
The second stage covers confirmation of diagnosis, including referral to local vision support services including eye clinic liaison officers, and the process of acquiring a certificate of visual impairment.
The third stage outlines post-diagnosis support that families should expect, including reasonable adjustments at school and details of the RNIB’s Curriculum Framework for Children and Young People with Vision Impairment.
The final stage includes information on living well with a visual impairment, educational transitions, and the move to adult services.
The pathway aims to offer chronological support, including what will happen, in what order, and why, Clarke said.
The hope is that, through the pathway, families will find it easier to identify where they are in the sight loss journey, and what should come next.
The pathway gives families the opportunity to check statements against their own experience and to identify information that has been missed and questions that they might need to ask, Clarke added.
The pathway also includes the professional standards of care that patients should be receiving, some of which has been provided by the Royal College of Ophthalmologists.
It provides professionals with a model of good practice and patient-centred care and has been “designed to be as accessible and easily digestible as possible,” Clarke added.
Wojciech Karwatowski, chair of the Clinical Council for Eye Health Commissioning, added that the pathway allows professionals to “see what good care and good care provision looks like.”
Fiona Broadley, chair of Habilitation VI UK, also noted that commissioners will be able to use the pathway to predict service level requirements and “ensure that services are equipped to provide the right support at the right time.”
Terms like ‘habilitation’ will no longer need to be explained to parents during appointments if they are able to make themselves familiar on their own terms, she added.
Briggs emphasised that the next stage of the process is dissemination and implementation of the pathway.
She encouraged those with ideas that might support implementation to get in touch with Guide Dogs.
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