Sophie always knew she wanted to go into palliative care with children. In one of her previous roles as an NHS nurse, she would often look after families with children with complex needs and found the most rewarding aspect building relationships with the families.
“As an NHS nurse, you don’t always have the time to build relationships and I couldn’t always give the family-centred care I wanted, which was frustrating and professionally demoralising. I often saw families in hospital who just needed a break, which we couldn’t consistently provide. It was hard to see that need and not be able to support families in a holistic way.”
Then a job working as a community nurse, looking after children in their own home, gave her insights into her dream job with Julia’s House.
Time to Care
When Sophie tells people what she does now as a Julia’s House Team Nurse, their response is often “how difficult and how incredibly sad,” but as she explains, it couldn’t be more rewarding and uplifting:
“Many people think that it’s a place where we care for children at the end of their life and that it must be a distressing place to work. But the reality is very different. It’s a place where we help children and families make the most of their time together, even though it may be limited.”
Because the approach to care isn’t a “one size, fits all”, when Julia’s House nurses first meet families, they begin by working out what specific needs they have, then tailor the care accordingly. Considering what additional services could be of benefit to them: such as sibling support or complementary therapy. Enabling nurses to be much more aligned to a families’ needs.
The respite care at Julia’s House gives parents much needed space, allowing them to “just breathe” as one parent shared, and have some time to themselves or do something practical that we all take for granted, like putting on a load of washing.
From Helpless to Empowered
Sophie recently supported a family who had no prior help caring for their seriously ill child and had never been able to leave them with anyone:
“Initially, the family felt apprehensive, nervous, and not entirely sure where to begin, at times feeling quite helpless. But now, they feel empowered and confident enough to pick up the ‘phone when they need help.”
Julia’s House offered respite care, support for the child’s sibling and emotional and practical support for the family. The full holistic team-based approach Sophie dreamt of back in her NHS days.
The families’ response just shows the importance of our service and the impact it has:
“We don’t know what we would do without you – I think we would be lost without Julia’s House” (parent at Julia’s House)
Support for Families
We all had a taste of isolation during Covid, but it’s something our families experience all the time – for them it’s not gone away. Sophie explains: “It’s like the families we support walk a different path to other parents. So many mental health issues affect our parents including confidence, low self-esteem, a sense of loneliness as well as isolation.”
“Parents often don’t (and can’t) prioritise time for themselves – it feels indulgent doing something others consider normal, like meeting a friend for coffee. There are a hundred other things they could be doing, so they stay home.”
Families support Us
It’s very humbling working for an organisation which is so reliant on the support of our local community for fundraising and donating, so we can keep on caring:
“Often the parents and families we support fundraise for us, which speaks volumes. They recognise how important this service is and want it to be there for others. These families have hardly any time for themselves, but they prioritise fundraising which is amazing, and we’re hugely grateful.”