Tracy Rennie

As both a nurse and a Lifelites Trustee, Tracy has dedicated her career to making a difference for children living with life-limiting conditions or medical complexity and their families. She has been at the forefront of children’s palliative care, witnessing its very beginning in the 1980s and since then, she has helped shaping services, supporting families, and mentoring generations of care professionals.

A vocation to help children

At the age of 16, Tracy knew she wanted to work with children but didn’t know in what capacity or role. During a session with a school’s career advisor, she saw a leaflet from Sheffield Children’s Hospital about children’s nursing and from that moment a 40-year career at the heart of children’s nursing and palliative care began.

“You either had to train as a general nurse before specialising as children’s nurse or find a hospital where you could do both at the same time. Sheffield was one of the few places you could do combined general and children’s nursing training together. Because I like to do things differently, I decided to do both at the same time!”

Tracy qualified in both disciplines after spending four years in Sheffield practicing both adult and children’s nursing before deciding to concentrate on working with children.

“As a dedicated children’s hospital it was very specialist, for instance, a regional specialist cancer centre, specialist orthopaedics, neonatal surgery, really pioneering stuff. It was a very interesting time being in Sheffield and I learned a lot.”

“I moved closer to my home town of Lincoln in 1987 and got a job as a staff nurse on the children’s ward in the district general hospital there, which was really different to working in the teaching hospital, where you don’t tend to see many children undergoing every-day procedures like having tonsils out or their appendix removed. Working in Lincoln was where I cut my teeth on the real grassroots nursing, looking after children undergoing a wide variety of treatments and care.”

The beginnings of children’s palliative care services

During Tracy’s initial training, Helen House, the world’s first children’s hospice, opened its doors in 1982, followed 5 years later by Martin House in North Yorkshire.

“While I was training in Sheffield, we had a session learning about Helen House, and it really resonated with me and stuck in my mind. And then when Martin House opened not a million miles from where I was in Lincoln, it reignited that interest.”

At the time, hospitals didn’t provide palliative care as we know it today or community services specifically for children, so this new approach by Helen and Martin House was something that resonated with Tracy.

“The children that we looked after who were unwell and dying, died in hospital. Families had no other choice. You tried to provide the best possible care you could within the hospital and involve the family and create good memories even at this saddest of times. But it wasn’t always easy to do on a busy ward, and obviously places like Helen House were starting to teach us how great palliative care could be done and should be done.”

“There was one incident that highlighted to me and my colleagues that we weren’t able to deliver the kind of palliative care we wanted to when a young boy came in to the hospital. He was at the end of his life and despite all our best efforts to look after him and his family, he died alone when the family was taking a short break and the nurse was called away urgently.That was a real turning point for me.”

A devotion to children’s palliative care

With the NHS facing considerable funding and staffing challenges in the early nineties, Tracy decided that she would take a career break which would coincide with a family move down to Norfolk.

However, fate played a hand and just before she moved she attended a conference where someone spoke about a new children’s hospice in Norfolk – Quidenham Children’s Hospice. She rang them the next day to find there was a part-time staff nurse role which she successfully applied for.

And so began a passion and devotion to children’s palliative care.

“Quidenham Hospice was in the Norfolk countryside, not far from Snetterton Racetrack. It was a converted coach house belonging to the local Monastery. It was on two floors, a really lovely building with lots of rooms, very quirky. It was an amazing environment to work in, having time to care for the children and families in a real home-from-home environment. I remember bouncing down the stairs thinking, my goodness, I cannot believe this is my job.”

It was at the hospice that Tracy first got to see the impact of sensory technology, as the hospice had a dedicated sensory room.

“This was before Lifelites and the latest technology, but even then, I saw the positive impact of inclusive technology, how you could engage with children who had limited or no verbal communications and how families could connect and have fun together. I remember children of all ages and brothers and sisters playing together with massive smiles, giggling and laughing. It was all about enabling children to be children, have childhood and family experiences and live as well as possible.”

Adapting to new ways-of-working in children’s hospices

In the early days, children’s hospices didn’t have specialist nurses or doctors that they could call on, so Tracy and her colleagues had to call on all of their nursing skills and experience to ensure they delivered the best levels of care possible.

“You really had to pull on all of your core nursing skills in looking after children that could have a high level of complexity. You would look out for signs they were feeling unwell or if they were unhappy or in pain or if they were having a moment of joy and fun. But this is what we trained to do as nurses, so it was brilliant to be able to put these skills into practice.”

Another fundamental difference working at the hospice was the ability to look after family members as they faced the most challenging of situations.

“We had time to support the families, which was so important. I can still remember a mum who came in on a Friday night so exhausted that she fell asleep while we were admitting her son for respite care. She returned on the Sunday and bounded through the doors because she’d had a couple of nights of proper sleep. And her son had enjoyed a great weekend with us at the hospice!”

Tracy has seen a huge proliferation in the number of children’s hospices and palliative care services in the 30 years since she started at Quidenham, which in 1998 merged with Children’s Hospice for the Eastern Region (CHER) Milton to become East Anglia’s Children’s Hospices (EACH).

“The palliative care sector was absolutely in its infancy back then. There were nine hospices and one children’s palliative care consultant in the UK. Now, 40 years later, it is unrecognisable! We have listened to families and learned about what truly great care is. The level of care, support, services, and expertise is astonishing and everybody is working so hard just to give the best possible care, helping children and families to live as well as they can carrying on that care when a child is at the end of their life and supporting families into bereavement.”

Lifelites and bringing assistive technology to children’s palliative care

Tracy first became aware of Lifelites while working at EACH, though at first both Tracy and her colleagues thought it was too good to be true!

“I still think it happens today, palliative care teams think it’s too good to be true, a charity contacting you and saying we want to give you something for the hospice absolutely free to help you care for your children, help them have great experiences. Plus, we’ll provide all the support we can and lots of training. And you are like, yeah, and what’s the catch? But right from those early days, I was able to see the benefit that the technology provided.”

Tracy worked at EACH for over 27 years, becoming Director of Care in 1998 and Deputy Chief Executive in 2005.

Alongside her increasingly influential roles with EACH, Tracy took time out to have her children before returning to help the organisation increase the number of families it supported and further developing the service, education and research activity.

During that time, Lifelites began its long-term partnerships with the EACH at Milton, The Nook in Norfolk and The Treehouse in Suffolk, and Tracy saw the huge benefits this assistive and sensory technology could have for children, families and palliative care teams.

“This new and evolving technology could distract children from the medical care they were having or make their exercising fun or play games with their siblings. That cause and effect is where all the technology really made a difference because if you’ve got a movement that then makes a noise or makes a sound or creates a picture that encourages the child to want to make that movement more.”

“I think, it’s very much about the connection, joy and fun part, but it’s also about how it can aid therapy and treatment.”

Shifting perceptions of children’s palliative care

In 2022, Tracy stepped down from her role at EACH to become an independent consultant working with the children’s palliative care sector across the UK, helping hospices and NHS teams to continue providing the best care possible to families in their local communities.

With more time on her hands, Tracy also embarked on two further projects close to her heart.

Firstly, she began working as a children’s palliative care adviser with the charity HEARD, which works with people and the media to inspire content and communication that changes hearts and minds about key social issues.

“Within children’s palliative care there is a misconception that it is all about end-of-life care, giving up and care which is offered when all else fails. As a result, families may not access the care and support they could benefit from, professionals may refer too late or not at all, and services are underfunded by the state.”

Too many times, in her career, Tracy has heard a family say to her “we wish we’d known about you earlier” when talking about using one of the EACH hospice services.

Tracy’s role is to help professionals talk about palliative care with each other and with families in ways which changes perceptions and increases understanding of what palliative care really is, as well as changing the way in which children’s palliative care is portrayed across the media.

Secondly, after years of seeing the incredible impact of assistive technology, Tracy became a Lifelites Trustee in 2023, bringing her extensive knowledge and experience to not only to the Board of Trustees, but also our Service Delivery team and our Lifelites 25 programme, which announced its first seven new projects in March 2025.

An exciting future ahead for palliative care

For Tracy, she can see an exciting future for both palliative care and for the inclusive technology Lifelites provides and is delighted to still be playing an active part in both.

“It is amazing to see how far the technology has come in the past 25 years and what the next 25 will look like. There is already growing research into how technology, like AI, can help in terms of the children’s communication, therapy and treatment. In regards virtual reality, for instance, how might that technology play a role in symptom management for children with complex symptoms, as well as end of life care.”

“And maybe advances in technology can pave the way for different kinds of support, maybe providing children and families with more access to remote support and monitoring, extending our reach using a ‘virtual’ hospice approach.”

“Whatever the future holds, it is great to still be part of both children’s palliative care and inclusive technology.”