Origins I

The inspiring history of Lifelites: 25 years of life-changing technology – Part 1

In October 1998, Les Hutchinson, then Planning and Development Co-ordinator at the Royal Masonic Trust for Girls and Boys (RMTGB), now Chief Executive of the Masonic Charitable Foundation, had just finished a tour of the emerging children’s hospice sector across England and Wales.

Impressed, inspired and humbled by what he saw, Les developed a ground-breaking proposal to launch a new funding programme designed to provide support for children’s hospices.

This special Millennium Project would go on to become Lifelites, a dynamic national charity now celebrating 25 years of providing life-changing technology to empower over 13,500 children and young people with life-limiting conditions each year.

We have spoken to some of the people who were integral in making Lifelites the unique charity it is today.

The birth of a Vision

After the creation of the world’s first children’s hospice, Helen House, Oxford in 1982, the children’s hospice movement had gathered pace with 17 established services by 1998. Today, there are over 50 across the UK.

In his original proposal, Les identified fundamental differences between adult and children’s hospices, which would help to define the RMTGB Millennium Project. As Les states in the original proposal, adult hospices provide end of life care, whereas ‘the main focus of a children’s hospice is caring for the living’, a hugely significant distinction and particularly relevant to the kind of project the RMTGB wanted to develop. Les explains,

“We considered a variety of ideas but the one we kept circling back to was about embracing IT and computing. After speaking to children’s hospices, we realised that, aside from their medical conditions, one of the major challenges children were facing was isolation and a lack of exposure to peers who were going through similar challenges.

“Lord Cadogan was President of the RMTGB at the time and was instrumental in setting up Lifelites. We wanted to do something innovative and large scale, so we agreed a programme to provide grants for comprehensive computer facilities for ‘educational and relaxation purposes’. The idea was to pay for networked computers that would allow children in hospices across the country to speak to each other, using things like early video conferencing.”

The project was launched to national acclaim at Freemasons’ Hall in 1999 and funded the first installation of computers at Demelza House, Kent in November, followed by a further 30 hospices over the next four years.

The power of collaboration

Les remembers being keen to ensure Lifelites was collaborative, something which remains a core value for the Charity to this day.

“After some time, we realised that we needed more specialist IT input to the project. Hospice staff were fantastic at caring for children but they did not have the knowledge or experience to implement new technology. So we created a fantastic partnership with the Worshipful Company of Information Technologists (WCIT), who really helped to elevate the project.”

The current Master of WCIT, Gary Moore, was involved in those early years and attended the first installation at Demelza House.

“I remember feeling the excitement of what we could achieve. The internet was still in its early life, the power of computing was rapidly expanding and it felt like we were at the forefront of something special.”

Moving beyond IT

By 2005, the Lifelites project was diversifying and looking to increase its impact, focusing on that fundamental idea that children’s hospices are about enabling seriously ill children to live life to the full.

Les Hutchinson recalls a widening of Lifelites remit:

“I think we realised that our original idea had limitations. At that time, the technology was not advanced enough to allow children with highly complex needs to communicate digitally. However, we saw how much the equipment was being used by siblings and parents to play games, so we started to think more broadly about how technology could help whole families connect.”

At this time technology was rapidly evolving, with greater awareness about the impact specialist equipment could have for people with disabilities.

Game-changing assistive technology

To capitalise on its burgeoning potential, Lifelites changed its status from a Masonic project to a separately registered charity and appointed its first Chief Executive in 2006, Simone Enefer-Doy.

Having been funded by Freemasonry since inception, Simone was tasked with raising money more widely to establish Lifelites as a sustainable charity.

“The main thing they wanted me to do was set up the charity and make some money! But I said at the time, I think it’s going to be really difficult to raise money for computers, we have to think about the needs of the children and find ways to use technology more widely to improve their quality of life.”

Gary Moore recalls the role the WCIT played in enabling Lifelites to be at the forefront of what is now known as assistive technology. One WCIT member in particular was an essential component to this strategic shift, Colin Knight.

“Colin was a giant in the room at Lifelites technical meetings. He was the real driving force behind the shift to provide hospices with assistive technology.”

Simone talks about the increased engagement with hospice staff to understand the needs of children with life-limiting conditions and then working with WCIT to identify solutions.

“We started to have detailed consultations with hospices to learn as much as we could about their services, the children they supported and the impact of their conditions. With this information, we then spoke to technology providers about things they were developing. We also learned that some hospices were finding pieces of equipment themselves and we wanted to find ways to share this knowledge right across the sector.

I remember speaking to Claire Floyd at Naomi House Children’s Hospice and she told me about this red button switch that you could attach to electrical devices or press to record and play sounds. This was a really simple idea but massive for children’s wellbeing. It meant that their parents could record themselves saying ‘I love you’ or ‘good night’ and the child could press the switch when they were staying in the hospice for respite, hear their voice and still feel that their parents were close to them.

These developing technologies gave children control and independence in a life where so much was done for them.”

The move to provide assistive technology opened up an exciting, dynamic world of opportunity for Lifelites and for hospices.

Onboarding specialist expertise

By 2009 Lifelites was ready to take 10 years of knowledge and expertise and roll out a higher quality programme of technology, training and technical support across 40 children’s hospices.

Simone remembers a desire to specialise and increase the impact of Lifelites’ services.

However, she knew that the Charity needed to recruit someone that was able to bring together the two very different worlds of children’s palliative care and specialist assistive technology.

Enter stage right, Bryan Giddings, still an integral part of Lifelites today.

“Bryan was someone I had come across as he was heading up IT at Freemasons’ Hall,” says Simone. “His attitude and personality had always impressed me and he explained IT in a relatable, friendly way. Bryan had always shown a real interest in Lifelites when he was in fixing our office computers!”

“We knew we were looking for some new impetus in the team, so I think we convinced him to leave his stable job and take a risk on a career in the charity sector!”

Bryan, who leads our technical services, picks up the story:

“It was a bit of a whirlwind in those first 12 months. I think we ended up visiting every single children’s hospice and building up a load of information and insight into the challenges they faced and how technology could help them to improve outcomes for children in their care.”

“You never get immune to the complexity and challenges children and families are living with but it’s great knowing that we’re providing opportunities for them to make memories together. The other bonus is that whenever I’m visiting a children’s hospice to install technology or fix technical issues, there’s always a warm welcome and a steady supply of tea and cake!”

Award-winning services

The following years for Lifelites were transformational. The Charity raced ahead as a leader of assistive technology, winning friends and accolades on the way.

Simone remembers a catalytic moment that helped Lifelites move to the next level.

“We knew we were onto something amazing but our impact really hit home when we won a Tech4Good Award for Accessibility in 2011. That was a really proud moment.”

“Winning the Accessibility Award was pivotal, where I realised that we weren’t just a start-up; here we were, being told by our peers that there was something very worthwhile about what we did. All of a sudden we had a badge which we could use to tell potential funders that Lifelites was a safe bet.”

Stay tuned – part 2 is coming soon!