Supporting families beyond medical diagnosis

Meet Paula Thomas, Eye clinic liaison officer (ECLO) at Great Ormond Street Hospital (GOSH). Paula explains her role in providing non-medical advice to help families to learn and support their children with their visual impairment. Paula supports patient Rue, featuring in episode five of Paul O’Grady’s Little Heroes, series 2. 

The role of an ECLO 

"Many Ophthalmic clinics have access to an ECLO and the role can vary depending on the need of the clinic,” Paula explains. “Here at GOSH I provide any non-medical advice to parents, children and young adults around their visual impairment. 

“For our families it is having a point of contact within the clinic. Someone who is empathetic to their needs and understands the ups and downs of raising a child with a visual impairment or the issues their visually impaired child may be facing. 

“This can take the form of emotional support, talking through the process of registering their child with their visual impairment, or referring them to local specialists who support children’s early development and support through education. It can also involve describing how mobility aids may help now or in the future, as well as ensuring that the family are accessing relevant benefits to help support their child. 

Paula’s shares how her role sees her supporting families beyond their medical appointment: “A child's needs change weekly and so to be able to offer a service to guide families to the right organisation or service is so important. 

“I am available to our families either at their ophthalmic appointment, by telephone or email, as we recognise that issues or questions may arise at any time. For me it is ensuring that as a hospital we are recognising difficulties beyond the medical diagnosis and that we are able to support our families once they leave our department.” 

From GOSH patient to ECLO 

Paula was once a patient at GOSH and reflects on how different the opportunities were for families at that time: “This was at a time when there was no internet and support was harder to find. For me, working here and helping families to learn and support their children is so important. Something my parents didn’t have when I was diagnosed [with a visual impairment] all those years ago. 

“I have been the ECLO here for 9 years and in that time I have watched my patients grow and fly, I am chuffed to think that I may have had some influence on them that has helped them and their families to always look for solutions and to find the support that they need.” 

Supporting Rue 

The first time Paula met Rue and her mother Martha was when Rue was given the news that her vision wasn’t going to improve and that she wouldn’t be able to drive. 

“For Rue everything happened at once and she went from a sighted education and social life to a future that felt very unsettled. On that very first visit I told Rue that she could ask me anything, that no question was a silly one and that there is often a solution to things that she may find difficult. 

“Rue and Martha know to contact me when they have questions, they share triumphs and frustrations and I am always here to steer them in the right direction. 

“I felt very privileged to be asked by Rue to be part of her GOSH story. I am hoping that the programme will help the viewer see that even if you have no or low vision that you don’t stop being the person you are, there is always a different way of doing things.”