As a registered sick children's nurse since 1988, I'm now in the final stages of my career, which has seen me in two main specialty areas of children's nursing—as a neonatal surgical unit nurse for 15 years, and my current role as a parenteral nutrition clinical nurse specialist (CNS) for nearly 20 years.
I first experienced home parenteral nutrition (HPN) discharge planning while in a neonatal unit. But in those days, there were no manikins on which to provide simulated training, and there were no homecare companies managing PN compounding and delivering ancillaries. Patients returned to the neonatal unit for blood tests and reviews and parents would just call the neonatal unit direct for advice, especially if a child had a temperature. Children often arrived in the neonatal unit at random times if they were unwell. It was as if they were home ‘on a pass’, with a bed in the unit to come back to.
At home, the patient was stuck in their bedroom during their PN cycle time, using hospital pumps and stands, and not ambulatory around the house at all. The hospital pharmacy compounded the PN and a hospital van delivered the PN to the patient's home. Parents took turns sitting up watching over their child at night.
When I moved into my current post, I became aware of the homecare company that was being used for HPN services. I remember visiting their premises to meet the staff and was taken by surprise to find the address was just a house on the south side of Glasgow. I was so impressed by the set up and the service they provided. It was amazing compared to the process I had experienced in the neonatal unit. I was then very fortunate to have the opportunity to visit Boston and Toronto and shadow their HPN CNSs while developing the HPN programme in Glasgow. Visiting the North American homecare company premises was like being in one large hospital, with all levels of clinical and administrative staff managing the HPN patients. Homecare nurses carried out training, blood monitoring and reviews, only contacting the patient's hospital nutrition team for advice if any clinical issues arose. Not for a minute did I imagine a set up like this in the UK, but, as we have seen the HPN numbers increase over the years, the homecare companies in UK have now moved into bigger premises, continuing to grow and expand. I can see our HPN homecare services soon mimicking the Boston and Toronto set up.
‘To see patients transition into adult care is evidence of the huge steps made in the world of paediatric parenteral nutrition and intestinal failure’
As I was an advisory nurse in the neonatal unit for one of the companies who supplied intravenous infusion pumps to the hospital, I was able to use those contacts to help me to achieve my first objective of helping the three paediatric patients who were already at home on PN, change over onto ambulatory infusion pumps. Although their parents were anxious, it was a life-change for them all, especially as one patient was a teenager who could now go out on his moped in the evening. The adults on HPN soon benefited from this change, too. In the past, families would hardly ever leave home to stay at their granny's house, now they are jetting off to Disneyland in the USA.
Gone is the surgical scrub-up past the elbows that seemed to take forever, gone are the hairnets, gone are the facemasks … that is until the pandemic hit us.
I have had the privilege of being part of many patients' lives. Many have been on PN from birth, and to see these patients, still on their HPN, transition into adult care, is evidence of the huge steps made in the world of paediatric PN and intestinal failure, and of great multidisciplinary team working.
One of the aspects of my career of which I am most proud is being involved in the formation of the National Paediatric Parenteral Nutrition Nurses Group. With representatives from all four nations of the UK, it has become a successful peer supporting group. It is a great networking opportunity for this ‘specialist’ CNS group.
Only until you reflect on what the situation was like 20 years ago, do you realise how paediatric HPN services have grown and changed. HPN patient numbers are not big in comparison to all the other chronic illnesses and expensive home therapies. However, it is one of the groups of patients that take a huge amount of specialist medical and nursing support and time within health boards and trusts. Changes in intestinal failure medical management and surgical techniques, lipid preparations and medications will continue, but those core principles of managing a paediatric patient with a central venous access device on HPN will stay the same.
While it has at times been tough, I have been proud to have been a lead in the Greater Glasgow and Clyde Paediatric HPN programme development.
I like to imagine the future of HPN and smile to myself thinking that, in years to come, as I sit in my care home armchair of an evening, a wee sherry in my hand, I may watch online delivery service drones with PN takeaways crossing the skies to patients' homes!