When the TV cameras rolled into Helen House children’s hospice

The popular misconceptions of children’s hospices are challenged in a BBC TV documentary series about Helen House in Oxford. Louise Tickle spoke to some of the staff and parents who appear in the programme

Everyone gets hugs at Helen House. There’s lots of laughter too, despite the tears. Above all, it seems to be a place where families feel at ease, and loved, and cared for. For a children’s hospice, it’s a remarkably upbeat place.

When BBC producer Jonathan Mayo visited Oxford’s Helen House three years ago to interview its founder, Sister Frances Dominica, for a programme he was making, he was overwhelmed by its atmosphere and felt that something very special was taking place within its walls.

Now, after 12 months filming with families who use the UK’s first children’s hospice, Mayo and the parents who took part are hoping that an eight-part BBC2 documentary, Life at Helen House, will show the extraordinary quality of care that such services can offer.

Participating in a documentary wasn’t an easy decision for the hospice management, though they had been approached several times before. “We thought very hard before becoming involved,” says Sister Dominica. “Many of the children who stay with us have progressive degenerative conditions and living with those can often be a frightening, frustrating and lonely existence for  them and their families. But we found that many of the families wanted to tell the world just what they have to go through and how Helen House is able to share a little of that load.”

The documentary makers’ proposal was put to all the families. Without their agreement the project would have been scrapped.

For Sandra Robertson and Kevin Oakley, whose daughter, Helen, has been supported by Helen House for 10 years, the motivation for taking part came from wanting to show other families that they did not have to go through the trauma of coping with a severely disabled and acutely ill child entirely alone.

“You have your wonderful baby but as all parents know, you’re earth-shatteringly tired anyway, and then you get this diagnosis and it’s a disaster,” says Sandra. “We didn’t know at that point if Helen was going to live or die. It’s like a living hell. But then someone turns up and says there’s some help for you.”

Helen has the rare metabolic condition glutaric aciduria type 1. As Sandra points out, caring for a child as ill as Helen is a massive responsibility that takes an unrelenting toll on the whole family. The documentary shows them trying to prepare for their first family holiday abroad with their son, and the considerable trust that they will have to place in Helen House to look after their daughter while they’re away.

It’s an agonising decision and one that is fraught with the possibility of mishap, as Helen catches a bad infection in the run-up to their departure, jeopardising the holiday plans. Will they or won’t they be able to go on this desperately needed break is the  subject of episode two, and shows the see-saw strain in the life of a family coping with lifethreatening illness.

Throughout Helen’s sudden deterioration the staff at the hospice are on hand, reassuring Sandra that, if she recovers in time for the holiday, she will get the best of care. And Helen loves spending time at Helen House – a week there with all the games, crafts, activities, group meals and attention from a variety of carers is clearly fun and exciting.

But though the documentary shows that a children’s hospice can be a place of extraordinary joy and happiness, it also has to hold the sorrow and pain of families whose children are dying. How did parents who were experiencing such grief feel about the constant presence of the crew?

Episode two shows one family mourning the sudden death of their baby son and it’s a difficult thing to watch that pain on screen.
Lizzie Pickering, whose son Harry died aged six, is now a fund-raiser for Helen House and helped to oversee filming. She believes that the sensitivity of the programme makers was key to giving parents a sense of security and trust in the crew, who spent several months at Helen House before even picking up a camera.

“I think the biggest point in the documentary’s favour was that we had a big input into writing the contract,” she says. “Anyone who had agreed to be filmed could withdraw at any time, and this did happen because one family’s situation deteriorated very badly and they didn’t feel comfortable going on. Jonathan and his team had real integrity. It was as far away from flyon- the-wall as possible. And because of the trust that built up, there was little that anyone asked to be changed when they saw the rough cuts. What you see on air is what those families wanted.”

Mayo, a producer at the BBC’s religion and ethics unit, says that, despite taking the greatest care to avoid disrupting the work at Helen House, he feels some staff were unconvinced that the crew should be there. He was, however, surprised at how keen families were to be involved.

“I might have thought it would be harder for the families than the staff, but they were happy to have a voice and to know that someone would listen,” he says. “And all the children we filmed liked it. As soon as you tell them they’re going to be film stars they love it!”

Quite apart from allowing families to tell their stories, one of the reasons Helen House wanted to take part in the documentary was to show that much of their work is about respite provision, rather than solely palliative care for dying children. It’s a role that isn’t always well understood, says clinical director Clare Edwards.

“There is often a lack of awareness among health care professionals of the holistic package of care that a children’s hospice can offer, and that we don’t just care for cancer patients,” she says. “Parents enduring the 24/7 care for a child with a degenerative condition, such as a metabolic disorder, may never get referred for respite care when they so desperately need it. All too often we are seen simply as an option at the end of life.”

Pickering remembers all too well that it was a full year into her son’s diagnosis when she was suffering from severe sleep deprivation and stress before she first tentatively visited Helen House to look around.

“It took us two or three visits before I really understood what they were there for, and it’s all about living life to the full – it’s support for life and for the whole family.”

Funding is an issue for all hospices, which are run as charities and depend on voluntary donations. But the care they offer is invaluable for the families who use them.

As Robertson says, Helen House offers her daughter an extraordinarily high quality of life that she doesn’t get elsewhere.

“The one-to-one attention she receives at Helen House is a kind of freedom for her – someone to be with that has all the time in the world to help her do whatever she wants. From dressing dolls to making cakes, painting, dressing up and making music. When she’s there she can do whatever she fancies.

“For us, Helen House is always there at the end of the telephone when things get bad or sad. They have also helped as our moral support at meetings with our primary care trust when things have been difficult, and frankly I’m not sure how we would have managed without them.” 

● Life at Helen House is due to be shown in January on BBC 2.

This article appeared in the 7 December issue under the headline “House of hugs”

This weeks other feature articles
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Former inspectors Linda Goldsmith and John Burton reveal the plight of family members in residential care (Adult sector)

Mapping informal care and residential care in the UK. New Joseph Rowntree research (Adults sector)