Katie works as a Kentown Childrens Palliative Care Community Nurse Specialist. Here she shares, in her own words, what her work means to her.
 

When people ask what I do, it can be hard to put it into words. No two days are the same, but the themes remain constant: compassion, tailored support, and individualised care – all underpinned by multidisciplinary working to provide specialist support to babies, children, young people and their families who live in a beautiful yet isolated area.

Embedded within the community children’s nursing team, I oversee a caseload of babies, children and young people with life limiting/life-threatening conditions. The population of our area is spread across a large geographical region, which increases the risk of health inequalities for C/YP who are in ‘hard-to-reach’ locations. To add to this challenge, our area currently lacks commissioned provision for 24/7 community nursing care and hospice-at-home services for children and young people. My role within the team is varied, and every week brings a variety of opportunities for me to work with different professionals and families, helping improve understanding of and access to paediatric palliative care, ultimately helping to bridge long-standing gaps in service.

 

Caring for a child with palliative care needs can feel overwhelming and exhausting. Large MDTs, multiple appointments, travel costs, work implications on parents, emotional stress for siblings and medical terms that are not easy to understand. I help families by offering the time to listen, find out what they are finding difficult and seek advice through the Kentown support team where needed. I am often a key worker for these families. Questions crop up throughout the week they know they are able to reach out and if I don’t know the answer, I link into their team of specialists and find out.

 

Sometimes, a visit focuses on helping a family navigate services, or advocating for what is important to a young person by working with their school or parents. Other visits may be involve holding space for the anticipatory grief a parent is experiencing following a devastating diagnosis and ensuring they have access to the right support for this, leaning into my local connections and links. Another visit might focus on introducing the concept of advance care planning, facilitating ongoing conversations and collaborating with the team around the family to complete a child-centred care plan that will make a real difference to their experience of healthcare moving forwards. It could also be supporting a colleague who does not feel confident to have these difficult conversations, and ensuring all staff have access to learning relevant to their role in supporting children with life limiting/ life- threatening conditions. I support families in their homes, school, and hospice - wherever they feel comfortable and safe. One of the key parts of my role is flexibility and the ability to adapt my offer to each individual family. The area is vast, access can be challenging. Long drives and poor phone
signal is expected, which is why smart working and good links with local networks is vital.

 

Arranging virtual meetings where appropriate and working closely with GPs, hospices, bereavement, adult services, therapists, schools and acute local and tertiary teams is a huge part of my role, a family may not always see the multiple meetings and emails behind the scenes, however they feel the benefit when the care is seamless and responsive knowing they are supported by a team who communicate well. Service development is another key aspect of my role, and by working with the other Kentown nurses and wider team we are able to come together regularly to share learning, highlight trends and identify common challenges. It is during these regular meetings we are able share insights with the aim to co-develop polices and guidance linking into the wider network and commissioning teams. We continue to evaluate and refine how we work, based on the needs of the families we support and families who will need us in the future.

 

Being a Kentown Nurse is more than delivering care. It means being a consistent presence for families in moments of uncertainty and being here alongside them for their journey. It is providing families with the right information at the right time for them to feel more informed and more in control so they are able to focus on creating positive meaningful
experiences together. I feel privileged to be in the position I am in supporting inspirational babies, children, young people and their families. If I have had even half the impact on the families as they have had on me then I know my role has been successful.