For many of these children and their families living in Kent, South East London and East Sussex, Demelza is able to offer a wide range of expert clinical and emotional support from diagnosis for as long as we are needed.
Melissa Mungovan, Lead Nurse, says, "Cancer is a disease most commonly associated with palliative care, and sadly, for many, they do not have as much time as others. During the pandemic and beyond, we have seen an increase in oncology referrals, and our community team continues to provide exceptional symptom management and end of life care.
However, the earlier children and young people are referred to us, the more fun things we can plan and the more support we can provide.
Our nursing and care team can provide everything the child or young person needs while supporting the whole family’s needs. We can facilitate many wishes, memory-making activities and support quality family time. We have creative and physical therapists, counsellors, and family liaison practitioners who can complement the work of our nursing and care team as required.”
5% of the babies, children, and young people Demelza currently cares for have cancer and 14% of the bereaved families we support have lost a child to cancer. Yet we know that we could be reaching more. Many families who could be benefiting from our support are either not accessing our services, or are accessing them only for end of life care.
Some of the barriers to families accessing our services earlier are either around misconceptions of what hospice care is or that the healthcare professionals that work with them don’t feel confident to know when or how to refer families to Demelza.
Demelza is working to break down these barriers for children facing serious or life-limiting conditions and their families in accessing our services.
Earlier this year, Demelza revealed its new brand that aims to make the look and feel of the charity more welcoming and accessible for families and healthcare professionals alike. This included changing our logo from ‘Demelza Hospice Care for Children’ to simply ‘Demelza’.
“Removing ‘hospice’ from our logo is just the first step to expel the misconceptions people have,” says Chief Executive, Lavinia Jarrett.
“A children’s hospice is a place of vibrant fun and laughter, where families are supported and children are given expert care, helping the whole family to create memories for however long they have together.”
We are also working more closely with our healthcare partners. Demelza has members of the team working in hospitals that can not only help us to reach more babies, children and young people, but also raises awareness of Demelza’s services with those healthcare professionals and offers support and guidance on the criteria for accessing these services. Through our work alongside hospital staff, they are able to grow in their knowledge and confidence of when and how to refer children.
Demelza provides student placements for a variety of clinical and social care students, which helps to inform the next generation of professionals on what the care we offer actually looks like. Sandy Barham was a third year student, studying Child Nursing, and completed a placement with Demelza this year:
“When I was given [my placement] I thought I was coming to a hospice to witness end of life care continuously and my perceptions have been massively changed since I’ve been here.
For children, such as oncology patients, they can provide a safe place for the children to come and swim with their families, or to continue doing activities that they would normally do which they wouldn’t be able to do whilst having cancer treatments. Demelza makes it safe for them to do that and to continue making memories.”
We can see this reflected in the experiences of the families who use Demelza – like Olivia, seven and her family. Olivia was just 17 months old when she was diagnosed with a massive, inoperable brain tumour, which caused her to lose her vision meaning she must rely on her sense of touch to experience her surroundings. She also has a reduced immune system which puts her at great risk every day; a common cold could be life threatening to her.
Olivia’s mum, Lisa, said: “The hydro pool at Demelza is an amazing sensory activity for Olivia to enjoy with her mummy, daddy and little sister. She loves every second. Olivia also never stops singing so music therapy brings her a lot of enjoyment. Thank goodness for charities like Demelza who are helping to improve Olivia’s life. It means so much to families like ours who are so limited in the experiences that are available to us.”
Demelza has also hosted professional study days, where healthcare professionals are invited to Demelza to learn more about the clinical elements of what we offer, as well as focusing on services we provide that they may be unaware of and sharing perspectives from the families using Demelza’s services.
Kat Horniblow is a paediatric oncology outreach nurse specialist from Royal Alexandra Children’s Hospital, who attended the most recent professional study day at our site in St Leonards, Hastings.
"It was lovely to meet other colleagues and we discovered aspects of Demelza’s service which we will be able to incorporate into our future practice. All aspects of the day were engaging. We have since been able to incorporate bereavement models that were shared into discussions with bereaved families.”