Origins III

The next 25 years: adapting to a changing landscape

What does the next 25 years hold for Lifelites? The charity is not short of ambition, setting a bold new strategy in 2023 centred around its 25^th anniversary celebrations.

In 2022, Rob Lightfoot became Chief Executive following Simone Enefer-Doy’s departure, and sought to help Lifelites raise the bar yet further.

“Lifelites has a remarkable history, with so many people contributing their ideas, skills and experience to make us what we are today. When I joined, I was so impressed by dynamism of the services and the ambition within the team. I felt that the organisation was ready to think bigger, primed and ready to go to the next level.”

Lifelites appointed Tony Harvey as the new Chair of Trustees in January 2024, following long-standing Chair, Mike Woodcock, standing down. Mike had overseen a prosperous era for the charity and helped to navigate the challenges of the Covid-19 pandemic, a particularly challenging time for all charities.

Tony, an expert in strategy and communications, was a major catalyst for the development of the new Lifelites strategy.

“I was first involved with Lifelites in 2013, when I was a Trustee at the RMTGB, although I had been aware of the great work of the charity for many years. Being the Chair of Lifelites is a great honour, I am proud to follow in the footsteps of Mike, and Christopher Aylwin and Andrew Ross before him.

The relationship with Freemasonry and connection with our roots is very important to us and something both Lifelites and Freemasons are very proud of. Taking that relationship forward is really important to me. A big part of our future is about nurturing that strategic partnership, finding opportunities to enable Freemasons to give their time and support and shining a light on the great work that Freemasons do in the community.”

The years immediately after the Covid-19 pandemic marked a significant period of transition for Lifelites and the wider children’s palliative care sector. With a new leadership team, operating in a new post-pandemic world, Lifelites set about establishing the foundations for an ambitious future.

“When I came onto the Board, which was followed shortly after by the appointment of Rob as our new Chief Executive, I wanted to help Lifelites to re-energise and redefine our purpose”, Tony recalled.

“This was brought into real focus at the time when we learned about the pace of change in the children’s palliative care sector. Whilst Lifelites was supporting around 10,000 children and young people through our partnerships with children’s hospices, we realised that there were up to 100,000 children with life-limiting conditions who could benefit.

Knowing the incredible impact of our services in children’s hospices, we felt that we had a moral duty to find a way to reach the thousands of children who, for whatever reasons, were not accessing hospice services. Reaching more children and families is the main ambition of our strategy.”

Hospices and beyond

With a growing cohort of children who could benefit from their services, the charity launched Lifelites 25 in November 2024. This ambitious programme aims to expand reach and deliver transformational change across the sector by supporting 25 new projects with technology, expertise and funding.

Leading on training for Lifelites 25 is Ellie Butcher, who joined the team from Noah’s Ark Children’s Hospice in North London in January 2025.

“I moved to Noah’s Ark from Great Ormond Street Hospital and was tasked with setting up a communications system to support children who didn’t use speech as their main form of communication. I couldn’t believe just how much assistive technology from Lifelites there was to work with!”

Ellie talks about the importance of introducing assistive technology in community settings like hospices to enable children to learn new skills regardless of their conditions.

“For a child to access funding for their own Eyegaze, they have to be able to demonstrate that they can use one to put at least 3 words together using the communication grids. It’s a specialised piece of equipment and using it takes practice, just like anything else. So having access and support from specialists in a setting like Noah’s Ark can help children to build up these skills and then go on to access their own equipment for use in schools and at home. So, my role in helping children to learn those skills was an essential part of their journey towards greater independence.”

As part of Lifelites 25, the charity will be supporting a wide range of community organisations, respite centres and special educational needs settings to give access to life-changing technology for thousands more children and young people.

Ellie will be leading on the training programme for these organisations and talks about the exciting times ahead.

“By reaching out to new partners beyond hospices, we can support more children, or even some of the same children but in different ways, and we’re going to be able to improve outcomes. It is often hard to acknowledge, but these children are expected to live short lives, so it’s vitally important that we do everything we can to help them play and express themselves because every moment they have with their families is precious.”

Looking to the future

Tony is quick to acknowledge the enormous contributions of so many people since Lifelites was created.

“It is a privilege to be Chair of Lifelites 25 years on from when we started. We have to thank all those people over the years who have contributed to our journey.

In its twenty-five-year history, Lifelites has had an amazing impact on the lives of children in every children’s hospice in Britain and Ireland, and on their families. We are unique; no other charity offers what we do. But there is more work to do and more children and young people to reach.

If I set my time machine to 2050, I would want to get out and find that Lifelites is widely known and acknowledged as a leader and innovator in children’s palliative care. Most importantly of all I would want to find that we are giving access to our assistive technology for every child with a life-limiting condition, so that they too can better communicate with their families and experience unforgettable moments of connection and joy.”