“We must not let young people with sight loss fall through the gaps”

I recently attended the Vision UK Conference held in London. The theme was ‘Turning the UK Vision Strategy into action’ and the day was really about how everyone working in the sector can continue to make improvements at the sharp end where they matter most – that is where people are using services.

Tiri Hughes receiving an award from Guide Dogs

The strategy provides a framework for the future of eye health and sight loss across the UK and has been developed by organisations working together and agreeing what the priorities should be. For me this was one of the key messages from the day; the focus must be on working in partnership with other organisations to deliver the best possible services for VI people.

The morning main session was a real highlight – the speakers were inspirational, thought provoking and engaging. One of the first people to present was Tiri Hughes who is 15 and registered partially sighted; she spoke to a packed conference hall without a trace of nerves, her only slight wobble when she talked of how her Mum has been her greatest advocate, constantly fighting her corner and making sure she had access to everything a sighted child would naturally have. She talked of problems she had faced at school when information had not been in the right format and how she felt ‘inconvenient’, that her needs were often overlooked. She told us how through meeting other children and young people from across the UK she had learned how patchy provision can be and how wrong this is. This raises a few questions for organisations like Henshaws delivering services;

  • What happens to children and young people who don’t have a Mum like Tiri’s who knows where to go for information, who to fight with, where to get support?
  • How can we work together better to ensure that wherever people live they have access to the support, information and services they need?

Tiri was also concerned that there is little or no Patient Support (or Eye Clinic Liaison Support) at Eye Clinics specifically for children and young people because she recognised how important this is. Other speakers later in the day re-iterated this point arguing that the point of diagnosis is critical and support at this stage is crucial in helping people come to terms with their sight loss.

At Henshaws in Manchester our Patient Support service for children and young people, and adults, is central to what we do; one clear message from the expert voices at the conference was just how crucial this is and that we must continue to focus on this area of delivery.

I listened to many people speak during the day; fascinating debates, advances in research and evidence, new approaches and examples of best practice but it is Tiri’s words which will stay with me and which, at Henshaws, I believe we should continue to bear in mind as we provide and develop our support and services for people with sight loss of all ages. Without question Tiri is an exceptional and able young woman with a bright future ahead of her; as a sector we must not let people with sight loss like her fall through the gaps. We wouldn’t just be failing them but failing society as a whole.

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Helen
Helen
Helen is an Research and Information Manager at Henshaws. Providing data and evidence to support service development and monitoring and evaluation. She is passionate about using research to make a difference to the lives of VI people.