SISTER Frances Dominica tells the story of Helen & Douglas House in Oxford, which she founded in 1982 after being inspired by terminally ill two-year-old Helen Worswick.

The nun, who was made an OBE in 2006 for services to healthcare, remains greatly passionate about the Magdalen Road hospices despite being no longer involved.

HELEN House was built around four pillars: friendship, hospitality, listening, and the highest standards of professional care.

There was no blueprint because it was the first children's hospice in the world.

The kitchen was near the front of the house and sometimes families arriving at the red front door would take a deep breath and say: "Oh, home cooking!"

Symbolically, the kitchen was designed like a farmhouse kitchen, with a big round table where we ate together.

This was often the place to which people gravitated, not only at mealtimes.

A cup of tea or a glass of wine would set the scene for family members and those of us who worked there, young and older, to talk and to laugh or sometimes to cry.

We never had patients, just children and their families. It was from them we learnt.

It was about building a relationship of trust – they became our friends.

When families began to know and trust us they would often take the opportunity of leaving their sick child with us for a few days, recharging their own batteries, having a short holiday, redecorating their home or just focusing on each other and their well children.

It was always for them to choose whether to stay or not.

Brothers and sisters were always welcome in Helen House and, in a different way, they often needed as much loving care and attention as their sick siblings.

However young, they perceived their parents' distress and exhaustion and needed to know that there was someone else there just for them.

Before the design of Helen House was completed I got to know a little girl of 10 and her mother and brother.

The child was terminally ill with cancer and died 10 months after I had met the family. I stayed with them during the final days and nights of her illness.

Her mother is Irish and when the little girl died the mother did everything in the traditional Irish way.

It was winter and we were able to keep the bedroom cold. We washed and dressed the little girl and her mother brushed her hair and arranged her favourite toys on the bed.

There was music and there were flowers and candles and cards.

Over the next few days family and friends, young and old, came to say their goodbyes.

In the midst of indescribable grief this seemed to me to be as perfect as it could be, and the experience left an indelible impression on me.

I asked the architect of Helen House to add on an extra bedroom which could be kept very cold. It is simply called the Little Room and families can arrange it exactly as they wish.

Siblings young and old have often chosen to 'visit' their brother or sister in the Little Room, sometimes taking a gift, a drawing or a favourite toy.

It is often helpful for family members to see the gradual physical change over a few days in the one who has died and there comes a time when those closest are ready for the coffin to be closed and the funeral to take place.

From the beginning we had said that children could be referred between the ages of birth and 16.

What we had not foreseen was how slowly some of the conditions with which they had been diagnosed would progress.

About 20 years after Helen House opened, we did a head count of our young friends who had passed the age of 16: there were 27 of them.

One was 28, 6ft 2 ins and hyperactive.

We engaged design developers to create a 'respice' across the garden for people between the ages of 16 and 35.

The first thing they did was to ask to meet some of the young people who would transfer from Helen House.

We had a barbecue with five young people and, with a little liquid refreshment to wash down their burgers, they became quite articulate about what they wanted.

When Douglas House was ready we took these young people to see it. They were speechless – all they could say was 'wow'.

They went to music festivals with the inevitable mud, and stayed overnight.

They went go-karting courtesy of Jeremy Clarkson. They went clubbing. It was all about living fully until you die.

In some ways things have not changed. We still need to achieve the highest standards of professional care. We are still – and always will be - on a steep learning curve.

We still need to build a relationship of trust with each family and to learn from them how best to care for their unique young person.

We are privileged if they come to us for help and support.

Let us not forget that 35 years ago home was the model and hugs were the norm.

It worked then, can it not work now - even if it means swimming against the tide?