Helen & Douglas House

Helen & Douglas House: The World’s First Children’s Hospice and Its Inspiring Legacy

Helen & Douglas House, based in Oxford, made history in 1982 as the world’s first children’s hospice. Founded through the vision of Sister Frances Dominica and inspired by the Worswick family’s experience, the hospice pioneered a model of care that supports both children with life-limiting conditions and their families. Today, there are more than 50 children’s hospices across the UK and many more around the world, all shaped by the example of Helen & Douglas House. In this conversation, we speak with Kat Williams, Head of Care at Helen & Douglas House, to explore the hospice’s legacy, its impact on families, and how technology from Lifelites continues to transform children’s hospice care.

The Beginning of Helen & Douglas House

Every story has a beginning and the history of the children’s hospice movement is no exception. However, it is hard to believe that before Helen & Douglas House opened its doors in 1982, there was no such thing as a children’s hospice anywhere in the world!

The inspiration for Helen & Douglas House was a young girl called Helen Worswick who was left with severe and irreversible brain injury after an emergency operation to remove a brain tumour. Helen’s parents took her home from hospital to care for her in the family surroundings.

The type of support and care that Helen and her parents needed and the quality of care her parents wanted for Helen, provided a blueprint for what the purpose–built children’s hospice would offer. The Worswick family and Sister Frances Dominica worked together to establish Helen & Douglas House.

A friendship developed between Sister Frances Dominica and Helen’s parents, with Sister Frances occasionally looking after Helen for short periods to give her parents a break.

From this friendship the idea of a small homely hospice for children formed and, after a 2-year fundraising campaign and building programme, Helen & Douglas House was officially opened in East Oxford on 30^th November 1982 by HRH The Duchess of Kent, the first of its kind anywhere in the world.

The Growth of Children’s Hospices in the UK and Beyond

There are now 54 children’s hospices across the UK and many more around the world, broadly modelled on Helen & Douglas House. They are dedicated to providing specialist and personalised care and support thousands of children, young people and their families.

Lifelites has been a proud partner of Helen & Douglas House since our first year in 1999. We are honoured to have played a small part in the history of this truly ground-breaking and inspiring charity.

Interview with Kat Williams, Head of Care at Helen & Douglas House

We caught up with Kat Williams, Head of Care at Helen & Douglas House, to discuss the astonishing legacy of Sister Frances and Helen House.

Lifelites: It is difficult to acknowledge that before 1982 children’s hospices didn’t exist!

Kat: Before then, children with life Limiting conditions  and their families specific care needs weren’t recognised as a specialist area. It isn’t only end-of-life care, it is that whole journey, supporting both the child, the parents, carers, siblings and  extended family throughout a child’s life.

Lifelites: To raise the funds and build Helen & Douglas House in such a short space of time is incredible.

Kat: The community in and around Oxford were so supportive, donating money to enable the hospice to open in 1982.

Lifelites: What was the main difference between what was provided by hospitals and what Helen & Douglas House offered:

Kat: Hospitals provided excellent medical care for children and look after them but they didn’t provide, holistic care for the whole family. We don’t only  look after the child; we support the whole family. It could be aunts, uncles, grandparents. We offer grandparent support groups, sibling camps and workshops.

It’s really important. Brothers and sisters of children with life-limiting conditions can find it tough to talk to their friends about what they are going through, so these group activities give them an opportunity to express themselves and talk to  other children going through the same thing about the challenges they are living with. It’s very much a holistic approach and supporting the whole family through their journey.

Lifelites: Bereavement support is obviously very important, but hospices enable families to live to the fullest, despite the challenges they face.

Kat: Hospices like Helen & Douglas House create normality, enabling families to make memories and have fun, as well as providing support and care. The Lifelites assistive and sensory tech allows our children to take part in in activities they wouldn’t otherwise be able to, in any setting.

We can use the Magic Carpet with children of all abilities, this allows children and young people to be immersed into light and interactive experiences, engaging all of their senses. The Sensory PODS can be used in any area of the hospice, creating fun, captivating play experiences.

Lifelites: Despite four decades of the children’s hospice movement and so many stories of the joy, happiness and fun found in children’s hospices, there remains this misconception that they are sad and morbid places.

Kat: Unfortunately, there is an association of dying with the word hospice. As end-of-life care can happen in hospices, people have this misconception of sadness. However, what we do is about helping children live life to the full.

Lifelites: What do you think the biggest changes have been for children’s hospices?

Kat: Obviously there’s been lots of medical advances in terms of medicines and equipment, but beyond that, I think that family centric approach has become deeper and stronger, the holistic support we provide the whole family.

I think there’s also so much more openness now about talking about death and dying which helps us talk to families about this and ensure their wishes are carried out.

Responding to what children and family want and need, giving them a voice is an  integral part of palliative care. Again, Lifelites technology plays a massive part in supporting the children to have a voice and choice.

Also, the sharing of learning and knowledge across children’s hospices in the UK and other countries has greatly improved, which benefits everyone. Our doctors do a lot of joint research papers with medical professionals all over the world, and share them across the sector to help improve the palliative care for children. I think there’s a real emphasis on learning, always improving and how can we always make things better for families, how can we reduce the pain or discomfort that any child is experiencing.

Lifelites: Has the way in which families access hospice care changed in your time?

Kat: Definitely. We’re supporting families much earlier in a child’s life. The breadth of our care and support we provide has grown so much in terms of offering care and support wherever the need, in hospital, at home, at the hospice and for siblings.

Lifelites: We’ve been incredibly proud to have been a small part of the Helen & Douglas House story and look forward to supporting you for many more years to come.

Kat: It’s incredible when you think about how far the technology has come and what it offers children living with life-limiting conditions. The Lifelite’s Eyegaze,the Magic Carpet and the sensory equipment has been amazing for our children. And the technology isn’t only for the children living with life-limiting conditions, it’s also used by their siblings, so they can play together. It’s for all the family so they can interact together

Looking Ahead: Continuing the Legacy of Helen & Douglas House

Helen & Douglas House will always hold a unique place in history as the first children’s hospice in the world. What began in Oxford in 1982 is now a network of hospices across the UK and beyond, all shaped by the vision of Sister Frances Dominica and the Worswick family.

At Lifelites, we are honoured to have been part of this journey since 1999. We provide life-changing assistive and sensory technology that helps children play, create, and make memories with their families. As we prepare to install a new package of technology at Helen & Douglas House in October 2025, we celebrate this pioneering charity and look forward to supporting its work for many years to come.