Hi I’m Caroline, I work in LauraLynn on the community team. So Lauralynn was founded by the McKenna family and they had two young girls who very sadly passed away within a short space of time and the family did lots of fundraising to create this wonderful organisation that provides palliative care to children with life limiting conditions.
For me Palliative care is a continuum of care that starts from the diagnosis of a child with a life limiting condition right through to end of life, bereavement care. It encompasses aspects such as symptom management, end of life care, short breaks both in the home and in LauraLynn House. The child is at the core but the family needs are also taken into consideration and it’s the holistic approach of care that we are very proud of in Lauralynn.
I work on the community team so we provide support to the families in the home so if the child has had a deterioration or if there is a particular increase in the child’s needs we can provide nursing support from a hands on nursing perspective but also from a symptom management view point as well. What we find with families a lot is when they look for support in the home. That its basically that they can be a family and that parents can focus on being a parent and not a carer and it take some of the pressure and it just take some of that massive responsibility away from the families and allows them to be the parents that they want to be and to pass that over to us, the care needs over to us. So one of the things we provide is the opportunity for families to have sort stays together in additional to the wider family support team which provides things like music therapy, psychology support, play therapy and we also have an activities coordinator who is wonderful at organising stays for families and doing lovely activities for families together so it gives the families lots of opportunities to be a family. I remember before I was on a home visit to a child who had had a complex seizure disorder, her care needs were quite high she had very frequent seizures, she required quite a lot of medications. On the day of the visit she had had quite significant cluster of seizures that morning so after I had settled her and given her medications we decided to have some down time, she was very lethargic very withdrawn after her cluster of seizures so we decided to do some story time so we were having a very quite moment, reading a story and there was lots of lovely peace and then we had a very boisterous lovely sibling come in and , she basically bounced onto the child’s bed and she started to tickle the child, she started to do some role play, they read the story together and the child who had seizures all morning and who had been so quiet after the seizures just completely lit up, her face completely changed, she was giggling so much she was actually shaking and I think what probably struck me at that moment was that, rightly so we cocoon and we protect these children with these live limiting conditions but often sometimes what they need is actually the normality and the nurture of their family but in particular their siblings so it just changed a really somber stressful situation into this wonderful moment of excitement and fun between two siblings so it just really brought home the importance of family centered care which is something we focus on so much in Lauralynn.