It’s a real privilege to support a family at the end of their child’s life
Sabine Schwaebisch on her role as as a band 6 care team nurse in palliative care at Helen House Children’s Hospice, Oxford, where 95% of children have a learning disability
Sabine Schwaebisch on her role as a band 6 care team nurse in palliative care at Helen House Children’s Hospice, Oxford, where 95% of children have a learning disability
Where did you train?
I trained at Oxford Brookes, graduating in 2009. I also have a degree in philosophy and educational science (special needs) from Rostock University in Germany.
What is your job?
I found my niche at Helen House five years ago. Historically, learning disability nurses have not played an important role in children’s hospices, let alone take clinical responsibility on shift.
However, the increase in complex care needs in children with disabilities and a shortage of children’s nurses have opened a door for us to consider children’s hospices as a career option. There are four learning disability nurses – three single trained – at Helen House.
‘My job is diverse: spiritual, social, psychological and emotional care integrated’
Clinical safety is the all-important basis and a continuous learning culture is vital. Competencies in treatment of epilepsy, pain, respiratory issues, tissue viability, nutrition and elimination sit alongside a sound and confident ability to identify and manage clinical deterioration.
Depending on the stage of the child’s journey this may mean medical escalation or the sensitive application of palliative care, with child’s comfort at the heart of every consideration.
‘I am passionate about play. It is never ‘just’ play – it is a basic right of every child’
The ability to pick up subtle changes in demeanour in children with non-verbal communication can help learning disability nurses when assessing changes in children’s health and well-being.
My job is diverse: spiritual, social, psychological and emotional care are integrated.
What is the greatest challenge?
To have your clinical abilities considered regularly demands honesty and candour. This needs strength, resilience, self-awareness and a positive attitude.
Some learning disability nursing skills can be described as ‘soft’ and are therefore harder to be extrovertly proud of, but this does not make them less important. They can make all the difference to families with children with complex needs who may find it hard to trust professionals.
What qualities do you think a good learning disability nurse should possess?
Seeing every child as a child first and as a patient second is a core strength. It is also important to establish effective methods of communication, identify behaviour management strategies and prioritise fun.
I am passionate about play. It is never ‘just’ play – it is a basic right of every child. Children with sensory and learning disabilities are most in need of support.
‘Many families rely on our service to cope’
Children with palliative care needs even more so because they want to make the most of a life that is limited. Learning disability nurses are ideally equipped to meet and advocate for these needs.
What do you enjoy most about it?
It is by no means an easy job. Self-care, team spirit, emotional strength and maturity are vital, but the rewards are second to none. There is no better feeling than knowing that we were able to make a difference to a family in the darkest of times.
To be able to support a family at the end of their child’s life is a real privilege.
What could you change if you could?
Funding. It is hard to secure statutory support or regular public donations. The anxiety about our charity’s future is a constant because many families rely on our service to cope.
What achievement are you proudest of?
With the help of the Roald Dahl’s Marvellous Children’s Charity, and the Burdett Trust for Nursing, I started a community art wall at the hospice. It has 40 interchangeable, recyclable canvasses that are jigsaw-shaped and form a big vibrant, ever-changing art piece at the heart of the hospice. It has given children and families many treasurable fun memories and valued legacies.
What advice would give a newly qualified learning disability nurse?
Learning disability nursing is what you make it. Trust in your passion when the hurdles seem endless.