With more and more children having a life-limiting condition, how to help them live well with the time they have available is the ellenor mantra. As each child is different and their needs are unique, ellenor works in partnership with them and their families to create a bespoke support service throughout their lives and beyond, as Head of Children’s Services Rebecca Scalzo explains:
The number of children living with life-limiting conditions in England has increased by more than 260% since the start of the millennium.1 This is partly due to advances in medicine that mean children are able to live longer with their condition.
Helping these children to live their life is a priority for ellenor’s Children’s Services Team headed up by Rebecca Scalzo. However, for many children with life-threatening and life-limiting conditions, and their parents, hearing the words ‘palliative care’ doesn’t sound like a positive step. “If there’s one thing I want, it’s for people not to be afraid of the words children’s palliative care,” says Rebecca. “It doesn’t mean death and dying but living as well as possible with the time you have available. Palliative care is all about improving quality of life.”
ellenor cares for children from the moment they are first diagnosed, across the whole trajectory of the disease. Providing palliative care early on and in a holistic manner means better outcomes for both the child and their families, says Rebecca.
“Every aspect of their life is affected. Every family comes in with their own concerns, strengths and difficulties and it is about working in a different way with each family. We look at every aspect of the patient and their family, not just the medical diagnosis.”
With just 2% of children with life-limiting conditions dying each year,1 making sure the remaining 98% of children facing this situation can get the best out of their life is essential.
For some, there is a need for practical support with managing their condition. For others it is helping them navigate through the complicated myriad of hospitals, doctors, funding, emotional and social support – not just for the child but for all the family.
This is why a bespoke plan of holistic care is developed that brings in all of ellenor’s support services throughout the child’s life journey and beyond: chemotherapy, or other support, for children with cancer in the home, respite, music and play therapy and bereavement support. “Every care plan we create is unique, just for you and your family.”
Cancer care and treatment at home
We are the only hospice in the UK providing support in Bexley and North West Kent enabling children with cancer to spend more time at home whilst undergoing treatment, including chemotherapy. Around a third of children ellenor supports are cancer patients, with between half to two-thirds making a full recovery.
For children and parents, receiving a cancer diagnosis is a frightening and daunting experience. That’s why the ellenor team is there to help with managing side effects, blood monitoring and psychosocial support to help get the family through this tough time. “Chemotherapy treatment is a relatively small part of their role,” Rebecca explains. “The staff also spend a large amount of time providing support, advice and symptom management for children undergoing their treatments, plus longer-term monitoring and support for families.”
Currently, the team provides this service to around 30 children. Nurses visit the patient’s home each week to administer medication, plus support symptom management such as pain and nausea relief. While some chemo therapies can only be administered in hospitals, the ellenor team provide what they can at home.
ellenor were the first hospice in Kent to offer at-home respite for patients’ families. “For lots of children’s hospices, in-patient respite is the model but as a community based palliative care team all of our individual care is provided at home. This way patients do not have to travel to us, or our team can take the child out for a session, so the parents or carers are able to do other things within the home” says Rebecca.
In addition, ellenor offer group sessions at the hospice for those under five years of age or for primary school children during the holidays. Often these are for children with more complex conditions and the focus is on multi-sensory activities. This is supported by family events and outings, such as animal visits, country parks and steam trains.
“We are helping children to access and experience the world in a way that most of us take for granted, even if they are very physically limited and don’t communicate the way other people do.” It also allows parents to meet and help overcome some of the social isolation issues that can develop when looking after a child with complex needs.
ellenor’s dedicated music therapist believes everyone has music in them. For children with limited verbal skills, music can often be a way of engaging them in a non-verbal way and building a relationship. “Banging a drum and getting a child to make some kind of response, for some children that’s a real achievement.”
A critical role is working with parents of babies with very short life expectancy. As Rebecca explains: “Many parents don’t know how to, or are frightened to, form relationships with a child who is sick enough to die and where life may be very short. Music therapy can support families to make those connections and meaningful bonds which can provide great memories for a family in the long term.”
Similar to music therapy, play therapy can help improve the attachments and relationship between parents and their child. It can also help develop a child’s communication skills, allowing them to express emotions they lack the vocabulary to articulate. This is particularly important when it comes to preparing for end of life or helping children cope with bereavement.
“End of life is a big part of what we do at ellenor, but it’s not by any means the biggest part,” says Rebecca. Around 15 children a year die at home with ellenor’s support, rather than in a hospice or hospital. “Our nurses provide 24/7 on call services for those children when they or their family wish them to die in their own home.” This year, the nurses have provided more than 700 hours of on call availability for children at the end of their lives.
Indeed, this supportive role continues even once a child has died to help the rest of the family carry on. Play and music therapists will work with families before and around the death of a child and provide support for usually a year afterwards.
This is supplemented by a bereavement group for children where the mornings are spent doing therapy work and the afternoon is fun focused. “We have around 20 people attend a time and there is no time limit – they can access this group for as long as they want.”
Although Rebecca says ellenor provides essential services, with more funding available she would like to expand the family support services. “Some families could benefit from more social contact with other families and opportunities to share experience with others in the same position”
She also acknowledges that it can be difficult for parents to travel, so opening up more online support could be an ideal opportunity.
However ellenor expands its services in the future, Rebecca is clear on one thing that runs through everything the charity does: “We want to continue to offer a range of services to support families that can be delivered flexibly to meet their needs”.
We want to continue being there for children living with cancer. Please donate whatever you can towards our vital work: www.ellenor.org/donate
- 1.‘Make Every Child Count’. Estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom. February 2020. https://www.togetherforshortlives.org.uk/resource/make-every-child-count/