My much anticipated visit to Helen & Douglas House

Photo: Busi Nkosi with Dr Emily Harrop from Helen and Douglas House

Busi Nkosi, Director of Advocacy for ICPCN, writes about her recent visit to Helen & Douglas House in Oxford, England.  It has been a long-time dream of hers to visit the very first children’s hospice set up by Sister Frances Dominica in 1982.

Last week I was fortunate to be invited by the child psychiatry department of Oxford University to be a panellist in a meeting of the launch of the Lancet Series on communicating with children about their own or their parents life-limiting illness. Keen to fulfil my long-time dream, I visited Helen & Douglas House Children’s Hospice in Oxford. This is what I learned:

On a cold, rainy day last week I was warmly welcomed into the hospice by Dr Emily Harrop who kindly showed me around the entire hospice.

Helen House was founded by Sister Frances Dominica in 1982 as the first children’s hospice in the UK. It presently provides hospice and palliative care to children from birth up to the age of 19 years who have life threatening and life limiting illnesses.

Coming from South Africa where the few children’s hospices provide mostly home based services, I was fascinated by all the equipment and staff available to care for the children. The staff members were smiling, warm and caring and showed such a genuine passion for their work. The first person I met was the hospice’s teacher, Louise O’Donnell, who said she found working with the children very rewarding.

The staff consists of 18 nurses, 1.7 doctors, including locum doctors with the ideal being two full time doctors. There is a counselling team, a teacher, a coordinator for young people and administrative staff.

A quarter of Helen House patients are children with cancer. Other children using the facilities have from neurological disorders, congenital anomalies, metabolic conditions, muscular dystrophy, organ failure and neurosurgical conditions, some of whom were involved in motor vehicle accidents.

Referrals & criteria for admission

Referrals come from hospitals, GPs and individuals averaging about 30 per year and they care for around 150 families each year. The criteria for admission includes children with brain injuries, anticipation of death, families who have experienced the death of a child and neonates with abnormalities. Emergency referrals can be accepted and admitted within a day. Care at Helen House is not only limited to sick children but their siblings and other family members are also supported.

Respite & home care

Respite care is a valuable service offered by the hospice and enables the family to receive short breaks from caring for their child while the hospice undertakes their often complex care. This care also extends to the home where the child remains in familiar surroundings.

Perinatal service

A perinatal service is also available, whereby parents who are pregnant with a child with congenital anomalies are supported in their decision making, and cared for throughout the pregnancy and birth if they choose to carry the pregnancy to term. They are also given counselling and compassionate care after delivery and when the child dies. A post bereavement service is also offered.

The building

The inside of the building is very well designed for children with palliative care needs. Each child has a spacious well-equipped room with an adjustable bed.  There are large play areas decorated with children’s murals, assortment of toys and colourful flickering lights. What really fascinated me was the stimulation room and a special bath fitted with various gadgets. The walls are full of children’s photos and paintings. This is a facility which every community aspires to have if resources were available, I felt very envious.

I was given the opportunity to witness Dr Emily talking to a mother whose child was being admitted for symptom control. She listened with great patience to all the mother needed to say and then addressed each issue in detail until the mother felt satisfied and ready to leave the child. This type of attention is not common to find in other health facilities but palliative care.

So many children have passed through the doors of Helen House and their families have expressed sincere gratitude for the care they received. Such as Libby, Alexander’s mum who stated in their 2019 Newsletter, “Helen and Douglas House opened more than just its doors to us. They opened their hearts and we gained another family. They help us to make fantastic memories, while giving me the chance to be a Mummy and not a nurse. They give me some much needed comfort and also their time to enable me to recharge my batteries.”

I would like to thank Dr Emily and the wonderful staff for making me feel  so welcome. It was an honour to be your guest for the day.