As part of this year’s Christmas Appeal, Bristol based children’s hospice at home charity Jessie May share an emotive story about the realities of a day in the life of one of their nurses. Jessie May nurses visit children and young people with life limiting conditions in Bristol and the South West.
Nurses work a 10-hour day, generally visiting two families a day for 3 hours at a time and focus on being a support to the families, any siblings and their Jessie May child. Ahead of the visits the nurses check on any relevant medical history. This could include seizure management plan, emergency care plans and drug charts, looking at recent hospital admissions or anything from the wider multi-disciplinary team.
“Having this knowledge before we enter the home gives parents a sense of reassurance and confidence in our abilities and also highlights that we have an eye on things outside the immediate team, it is not always obvious however we do work and communicate regularly with other professionals from other services.”
The first visit of the day is 45 minutes away, with the increase in petrol prices the nurses are careful to be organised so they don’t get caught out at an expensive petrol station.
“The first visit is with a little renal patient with a big personality. I know this child well as I previously cared for her on dialysis. My main concern is that she has a blood thinning drug regularly as part of her dialysis treatment therefore trips can result in a bump to the head which can lead to a bleed which can be catastrophic.”
“I arrive and have a brief catchup with mum, she knows me well and time is precious. Mum heads off to run errands and we begin baking. It’s a good morning with no hiccups, our Jessie May child does tire from baking and playing with the doll’s house. We play dolls and dress ups quietly and wait for mum to come back before hospital transport arrives to take them in for a long afternoon of dialysis.”
“The morning has flown by it has been a morning of fun and play however recently I received a distressed call from mum to say that after a dialysis session our Jessie May child had two seizures. This is totally new for her and obviously a really worrying time for mum. Despite how it looks there is always a subconscious awareness that our Jessie May child is on a tightrope of stability.”
Lunch is generally taken on the road as the nurses have an hour to get to their afternoon appointment.
The second visit of the day is to a teenager who has been on the Jessie May caseload for over ten years. For this visit the nurse has the assistance of a first-year student who up until now has accompanied her on some fairly routine respite visits. Today things were different.
“We arrived to mum at the front door still in her dressing gown, this in the first instance is highly unusual. We go through to the child’s bedroom and it is quite evident that our Jessie May child is unwell. She looks pale and lethargic and has a nebulizer (inhaled medicines over her face). This is the first time that I have seen this child unwell and, in these situations, it is really important to be guided by the parents as they have often seen their children extremely unwell many times.”
“We begin with a full assessment and as I have a student with me it’s helpful for them to see what respiratory distress looks like and the levels of respiratory distress we may encounter. Guided by mum and with regular observations recorded to give us a clinical picture we continued back-to-back nebulized medicines, paracetamol for a high temperature and comfort and assisted with her respiratory effort by repositioning and patting (mum was able to perform chest physio). At this point mum who is very sensible was not at the stage where she felt an ambulance needed to be called. Once our Jessie May child’s respiratory effort settled slightly mum even took herself off for a quick shower to prepare herself for a busy night with her daughter. We took that as a nod in the direction of trust and continued to monitor and provide comfort to our young lady.”
Following on from that visit mum informed the nurse and another team member of how unwell her daughter had been.
“She had managed to avoid a hospital stay thanks to her dedication to managing her medicines and chest physio, however it highlighted that you never really know what you are walking into with our families until you get to their houses. It is important to draw on clinical knowledge and skills, remain calm and above all listening to our families wants and needs is essential to providing the much-needed support they have come to depend on.”
The end of the day for the Jessie May nurses involves completing paperwork and travelling home. These skilled nurses draw on all their knowledge on a daily basis. If you feel able to support Jessie May or want to find out more about the charity’s work you can read more here: jessiemay.org.uk/christmas-appeal
