Palliative care is often a misunderstood term; for most people, when we use this word, they automatically associate it with dying, but what it means is that there is no curative treatment available. A person can be classed as being at a palliative stage but may go on to live for many years.

Cancer is a disease most commonly associated with palliative care, and sadly, for most, they do not have as much time as many others. During COVID-19, we saw a rise in oncology referrals to our service for symptom management and end of life care. This rise was due to the broader pandemic implications of reducing travel and contact, not the virus itself. Since then, the referrals have continued, and our community team has provided exceptional end of life care in the child or young person’s home. Some families will choose to go to a hospital, but more now are choosing to be at home, with their bed and comforts, family and familiarities.

Our Nurses can provide everything the child/young person needs while supporting the whole family’s holistic needs; we can facilitate many wishes, memory-making activities and support quality family time. We have a Music and a Movement Dance Therapist, Counsellor, and Family Liaison Practitioner who can complement the work of the Nurses as required.

I know that alongside the word ‘palliative’, the word ‘hospice’ fills people with dread, with thoughts that it is all about death and dying; our work is not all about death, but dying is a part of it. For the most part, our work is about supporting families to get some rest, have fun and make unforgettable memories. Our hospices are bright, welcoming, and predominantly happy places. The earlier children and young people are referred to us, the more fun things we can plan and the more support we can provide. Many children and young people who are referred to us, outlive our services as they become adults. We need to work harder to ensure people know that when a referral is made, it is not a signal that there is little time left or limited hope; it is to enable families to access extra support and care outside of statutory services.

Our staff are highly experienced and specialised in their field, caring for children with very complex health conditions is what they do immensely well every day.

As medical science has improved, children and young people with complex health conditions are now living longer than ever anticipated. Their care is more complex than ever before, but our staff rises to the challenge every time. Palliative care has to have a collaborative approach, to be effective, and we work very closely with external professionals to ensure we are delivering the best care possible.

Yes, we support end of life care, but we strive for the children, young people, and their families to have the best life first and foremost…and isn’t that what we all want?

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