Families with cataracts meet for the first time over coffee and treats

A group of patients and their families living with cataracts were able to interact with each other for the first time thanks to an event delivered by members of the Eye Department at Sheffield Children’s Hospital.

The event encouraged families living with cataracts to visit the Hospital and share their experiences. It also gave families an opportunity to ask each other questions about their unique journeys and learn all about the outstanding care that they had received during their time at Sheffield Children’s.

Whilst at the event, eight-year-old Tilly was able to share her story, whilst also benefitting from meeting others with the condition for the first time. Natalie, Tilly’s mum, said: “Tilly had never met anyone else like her, but at the event we met a little girl who was a similar age to Tilly when she was first diagnosed. They spoke and Tilly was quick to point out that the condition that they shared doesn’t need to limit them.”

As a result of the outstanding care that the eye department deliver, Tilly has been able to continue pursuing her love of sport, taking part in gymnastics, karate, lyrical dance, cheerleading and more! Natalie added: “The eye department changed Tilly’s life. From the moment we first came in, they’ve been as supportive as possible and are always there when we need them.”

What are cataracts?

Tilly was first brought to Sheffield Children’s when she was two years old, where she was diagnosed with cataracts in both eyes after experiencing sight loss one morning during a car journey. Cataracts occur when the lens of the eye, a transparent structure which light passes through, becomes clouded over. This prevents some light from passing through to the retina and optic nerve to the brain, and results in clouded vision.

Once diagnosed, treating cataracts can involve an operation to remove the cloudy lens. As the eye cannot focus without the lens, professionals can replace the focusing power by using implant lenses, contact lenses or glasses. Patients and families at Sheffield Children’s are offered a combination of these options, with eyepatches being commonly used to aid the recovery process.

How do the team at Sheffield Children’s support patients and families with cataracts?

Orthoptists Claire Williams, Claire Whalley and Finn Bergum support children, young people and families with cataracts who visit Sheffield Children’s. Alongside Optometrist Priya Popat and Principal Optometrist Olympia Haralambous, the trio support patients like Tilly and make sure that they are well-informed throughout their journey.

Finn said: “When patients and families first come in, we tell them all about what their journey could look like, offer them any support that they need, and give them a safe space to ask questions too. As the children get older, we also teach them how to use and put in their contact lenses and can also create cosmetic contact lenses for children and young people who have damage to the front of the eye.”

The team offer clinics for patients and families and deliver holistic care from the moment they first walk through the door to point at which they transition to adult services at the age of 16. Claire said: “Over time, we watch patients and families take over their own care. At the beginning we put the lenses in, then teach the parents to do it, and by the time that the patients reach a certain age, they’re often able to put them in themselves. We’re able to go on that journey with them and that can be really special.”

Bringing patients together

After a number of patients and families were referred to the service, the team realised that giving these families a space to interact and share their experience could offer an additional level of support and contribute to their existing holistic care package. With the help of the play team, they set up the event, inviting patients and families to share their experiences, stories and questions.

Claire said: “It was a lovely day. We saw long-time patients like Tilly and their families who shared their experience with the new families – which was exactly what we wanted. For parents too, we wanted to make sure that our new families know that they aren’t alone.”

Caroline also attended the event with her son Elliot. Elliot has been cared for by the team at Sheffield Children’s since he was 8 months old. Now 15 years old, Elliot loves playing the drums, guitar and even practices taekwondo in his spare time. The care from the team has helped Elliot feel ready for his upcoming GCSEs, which he will sit this summer.

Caroline said: “When we got the invite, we knew we could support some of the younger families and it was great to see Elliot socialising with other families. He chatted about how school was, going to sleepovers and learning how to do his own lenses, which was really important for his independence. It was good for him to explain to other parents that it doesn’t need to be limiting condition, and we hope that this put them at ease.”

“We were really grateful to the Eye Department team for setting this up. They’re always kind and receptive and put the needs of patients first.”