Origins II

Breaking barriers: Eyes that talk

After winning the Accessibility Award in 2011, Lifelites began investigating a new theme of accessibility; enabling communication. For many years, much of the technology available was geared to enabling play or providing sensory experiences. However, Lifelites soon became aware of a new piece of tech that would change everything.

“We first came across Eyegaze in about 2013” recalls Simone Enefer-Doy, Lifelites Chief Executive from 2006 to 2022. “We were introduced to it by Dr Mick Donegan at Special Effect, who came to showcase it to our team. We were blown away by the potential of it. Here was a piece of technology that could enable children who did not have a voice to control a computer and communicate using the movement of their eyes.”

Always thinking about how new technologies could be incorporated into Lifelites’ offer for children’s palliative care, Bryan Giddings, Lifelites Technical Service Lead since 2009 remembers the excitement and some of the things they would have to consider if Eyegaze was to be as powerful as they hoped.

“I think the original Eyegaze system we saw was a fairly bulky, standalone unit and cost about £15,000! This is often the way with technology, we all remember that holding the first mobile phones was like lifting weights but over time there’s a process of refinement and that’s exactly what happened with Eyegaze.”

One of the key elements of Bryan’s role with Lifelites was to identify suitable pieces of technology and then configure and install them in a way that was suitable for children with highly complex needs. The Eyegaze provided by Lifelites now is a portable, tailored system that allows the equipment to be used to maximum impact by a children’s hospice service in a variety of settings.

Giving children a voice

By Autumn 2014, Eyegaze was a consistent element of a Lifelites package and the impact for children and families was already proving to be life-changing.

Bryan remembers one of the first times that the enormity of what Eyegaze could do came into focus.

“I was at one of our partners in the winter of 2014 demonstrating the Eyegaze to hospice staff and parents. A mother came up to ask if her daughter could have a go. I set up a simple painting app for her. The girl was non-verbal and had really complex conditions. So, we sat her in front of the Eyegaze just to see how she would take to it, because we really didn’t know.

As her eyes moved around she started to paint colours on the screen. Her mother was a little sceptical at first and said ‘but she doesn’t really know what she’s doing, it’s just painting as her eyes move.’

I suggested that we try exploring the paint pallet. I asked the girl to change the paintbrush colour to yellow, which she did, then orange, then green and so on.

Amazed, her mother asked, ‘but how does she know the colours?’ To which I replied, ‘she is 12 years old and has been a sponge for information all her life but with no means to tell anyone what she knows. Now she has a way of expressing herself.’

Seeing the tears in the mothers’ eyes as she realised her daughter had been listening and taking everything on board her whole life without having the means to communicate back still moves me to this day.

It also made me realise that the impact we were having extended far beyond the individual children, giving them a voice through something like Eyegaze was going to change the way their families understood and interacted with them. It was mind-blowing.”

Responsive to needs in children’s palliative care

A central theme of Lifelites development has been the drive to innovate. At the heart of this has been the desire to stay at the cutting edge of technology development, an approach always grounded in the fundamental requirement for Lifelites to remain responsive to the needs of children with life-limiting conditions and the children’s palliative care services that support them.

By 2019, the health sector more generally was placing significant emphasis on personalised care, which prioritises the provision of care and support tailored to people’s unique health needs and importantly providing it when and where they need it.

This approach prompted the creation of hospice at home and community services and not for the first (or last!) time Lifelites pivoted its own offering to stay relevant to its partners.

“Portability was always a big thing for Lifelites,” says Bryan. “We’d known for a long time that the equipment we provided needed to move locations. Hospices don’t often have lots of storage space, and more importantly we’ve always been incredibly passionate about providing technology that can be taken to wherever the child feels most comfortable. Some of it was simple things like fitting wheels, enabling equipment to change height and tilt so that they can be adapted to different children’s needs. Obvious stuff when you think about it but not every piece of equipment has those features built in, so we’ve always tried to layer in these accessible features to their configuration before we install.”

Leading the charity for 16 years and working across two fast paced and evolving sectors, Simone was no stranger to the constant need to adapt.

“The arrival of hospice at home services was a big deal. We needed to think about the technology we were providing and find smaller, more portable solutions to enable new hospice teams to take equipment out into communities. iPads, Virtual Reality headsets and switch toys were a huge part of this but we also knew that we would have to think about how we embedded the use of technology into these teams. We also came up with the concept of the Tech Trunk. In simple terms, a Lifelites branded suitcase filled with tech that helped keep our technology at the forefront of our partner’s minds in a really accessible and practical way.”

Enhancing impact through training

Reflecting on what has made the charity a real force for good across children’s palliative care, Simone is keen to stress the huge value of Lifelites training. Not only does Lifelites provide the technology and the technical support, it also ensures that children’s palliative care professionals have the skills and confidence they need to harness the life-changing impact of the equipment.

“Without the training, there is always the risk that all this fabulous technology sits in a cupboard with staff too scared to use it,” says Simone.

In recent times, the charity has recruited trainers with direct experience of delivering care and play activities within children’s hospice, including one of our current trainers, Dan Brand in 2019.

Dan has an extensive background in children’s services working for eight years at a children’s nursery and then seven years at East Anglia Children’s Hospice (EACH) in Ipswich as part of the play team.

“I had been using Lifelites technology at the hospice with children for years and loved it. When I saw the opportunity to join the training team, I jumped at the chance and haven’t looked back.”

“Children’s palliative care is a really specialised sector. I think it helps when training staff in hospices that they know I’ve been in their shoes, we have to make things relatable. You can tell when training is going well because you start to see the cogs going round in people’s mind and they start to say things like ‘oh wow, this would be a great piece of tech to use with this child’ or ‘that child is going to absolutely love this!’ We make things really tangible for them and help teams to embed the tech into their services as standard.”

A world of inclusivity

Dan talks about the breadth of technology now offered by Lifelites and thinks it is so important that the charity offers equipment that caters to all children, no matter how complex their needs.

“The great thing about our packages of technology now is that they’re so varied. The children and young people accessing children’s hospices really do have the highest levels of medical complexity but with our technology there is always something that they can engage with.

We took a call from a mother whose son had recently attended a children’s hospice we had supported and she was asking us where she could get her hands on a PODs tent. Her son had really complex needs and profound autism, which meant that he was often very agitated and distressed. His mum said that he had laid down in the POD the week before when he was particularly distressed and he calmed down immediately. Apparently, he had gone on to be immersed in the sensory lights and sounds for 45 minutes and his mum said this was the longest time in his entire life that he had been relaxed. As much as anything, it gave her much needed respite.”

Make sure you read the beginning of our story, and check out our technology packages.