Walking into the Helen & Douglas House, on the outskirts of Oxford, you would be surprised by the ‘juxtaposition of heartache and happiness’. The rooms and gardens are great for fun and relaxation but also prove a wonderful retreat to grieve. The playrooms that are fitted with Xboxes, toys, and dressing-up chests are a wonderful place to play and have fun, whilst in the heart of the children’s hospice you will find the dreaded “cold-room”. The “cold-room” is a chilled bedroom, where parents can come and spend time with their deceased child before the funeral.
The Helen & Douglas House is located on the outskirts of Oxford, and was established in 1982 as the first children’s hospice in the world dedicated to providing respite for children and young adults with life-threatening and life-limiting conditions. Clare Periton is the charity’s chief executive. Periton is a former nurse and joined the house in 2005 as the director of clinical services. “I remember telling an auxiliary off for sending a family home because there were too many people in the room. I don’t mind if you’ve got the cat, the dog, and 10 people in there; it’s what the family wants, it’s not about what we want,” said Periton. Her experience of death in community hospitals and her own father’s death inspired her to improve end-of-life care.
Periton along with the staff are committed to creating a safe environment where no one is judged, “if your child has died, you can still join in the Christmas party. You can still have a glass of wine… you can still have a cry.” At Helen & Douglas it is a priority that all the staff, including cleaners and kitchen staff are well equipped to deal with the emotions of parents, as it is the staff who often come across the parents at their most vulnerable. Periton continues to relate a recent story of how the undertakers arrived during their Christmas party, “after debating whether to sneak them in by the back, they were brought in the front. You can’t dress it up. The pragmatism helps normalize death. If someone has died, we want to acknowledge they’ve died and not ignore them.”
Jack Smith is a 12 year old, with cerebral palsy and epilepsy and is currently receiving care at Helen & Douglas. Jane, Jacks mother was initially very angry about being at the hospice, “to come here was admitting that one day you’re going to need the cold room… that was really hard. But you stick at it and now we’re all excited to come,” she said. “Patients are often fearless. Parents can be more challenging, some can be controlling about their child’s care. Earning trust takes time. People want to go where they can be normal and they’re safe,” said Periton. Helen & Douglas currently has about 250 children on its books and beds for 15. To read the full article, click here.