Hospice is a philosophy of care that values life from the moment it begins to the moment it end. - Dame Saunders
This week is Children’s Hospice Week, and as such it seems appropriate to talk about the H word.
This year’s hospice week theme is pushed to the limits.
At the moment, families with seriously ill children are pushed to their limits. We have been pushed to our limits for the last 18months. Caring for a child with serious health needs is exhausting – and often the challenges we face are not portrayed within society.
However, at the same time, children’s hospices are being pushed to their limits – with more and more children in need of their care and during the pandemic there has been huge funding restraints due to the cancellation of large-scale events. Children’s hospices only receive a small portion of their funding from central government, the rest, is from generous donations, fundraising teams and large-scale events.
The word hospice seemed to bring fear, ‘that look’ and a great deal of sadness. Especially in the realm of paediatrics.
Hospices are such wonderful places, about more than end-of-life care. They are spaces where children can access certain longed for therapies such a music therapy and hydrotherapy. Spaces where families can be families. Hospice’s allow children with a life-limited condition to be children. Play with their friends. Explore big feelings and emotions. They are spaces for memory making, celebrating life.
There is so much more to a hospice than society leads us to believe.
The hospice is for the whole family.
Children and young people can access additional medical support from teams such as a Symptom Management Team or the hospice-based OT and PT. All of which look at the child from outside of the common frameworks, prioritising comfort and quality of life.
Parents and carers are able to access support networks, social contacts and appropriate experience-based therapist support.
Siblings are able to talk through big emotions, meet other siblings in the same situation, express themselves during their siblings’ life and death.
Personally, we couldn’t imagine life without the hospice team.
From the Symptom Management Nursing Team who have helped us develop an Advanced Care Plan and Symptom Management Plan.
The out of hours team who have helped us divert many a crisis and potential hospital stay.
Our named palliative care nurse who liaises directly with the named consultant, enabling us to spend quality time with Boy Wonder, rather than on the phone!
The named children’s nurse who ensures we have a regular day’s break.
The carers who see Boy Wonder as a little boy who deserves to have fun!
The music therapist who, even on the worst days, enables Boy Wonder to breathe rhythmically and relax his body.
The cook who always ensures you have a mid-morning drink, and lunch on the way if you are staying more than a few hours.
The counsellor who delivered 18months worth of psychological support to me.
The events and play team who have introduced us to The Clown Doctors, Jessies Fund and allowed Boy Wonder to play in his own way, in his own time.
The 2-hour break when we have been in hospital for 10 days. Someone thought of us, acknowledging, that we needed just a couple of hours off the ward. Something we were able to do knowing that everything wouldn’t be a train crash when we arrived back because the hospice team would be there.
The hospice did that for us.
The hospice sent 2 nurses to do a night shift in the home when we had just returned from a 2-week HDU admission at the tertiary hospital, to enable us both to sleep and recharge our batteries.
The hospice is so much more than a building.
It is a feeling, a team, a family, a hug!