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. 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.
Don't be Afraid of Palliative Care
“If there’s one thing I want, it’s for people not to be afraid of the words children’s palliative care,” says our Children's Team. “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.”
Here at ellenor we care 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 the Children’s Team.
“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 our 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 & Treatment at Home
We are the only hospice in the UK providing support in North Kent enabling children with cancer to spend more time at home whilst undergoing treatment, including chemotherapy. Around a third of children we support 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 our 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 the role,” the Children’s Team explains. “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.”
Nurses visit the patient’s home each week to administer medication, plus support symptom management such as pain and nausea relief. While some chemotherapies can only be administered in hospitals, our team provide what they can at home.