A Day in the Life Of - A Children's Hospice at Home Nurse

Tina Bodell joined Rennie Grove Hospice Care’s children’s nursing team in 2017.  She has been a children’s nurse for 33 years.

0900 - Tina’s arrives at her first patient visit of the day.  This is a planned visit that has been booked inTina Bodell advance and takes place once a week.  On arrival, her first question to Mum is “how are you”.  Mum is looking tired, she was up at least 5 times in the night because Danny was unsettled, so after talking about Danny’s condition and about the family’s health in general, Tina encourages Mum to pop out for an hour or so with Daisy, Danny’s younger sister.

Danny is 13 and has a rare condition that causes muscle weakness.  All of Danny’s muscles are affected which means that he needs help with everything, including his breathing and eating. Danny needs lots of medical equipment and this makes going out as a family really difficult. He can be rather withdrawn and spends a lot of time playing on his iPad.  After his mum has left, Tina takes Danny off his ventilator, which is a mask and machine that helps him breath overnight. When he is well, he doesn’t need it in the day. Tina then gives Danny a milk feed through a gastrostomy tube, a tube directly into his tummy. Tina encourages him to do something a little more physical and stimulating and so they play a couple of board games and some indoor basketball with a foam ball.

When Mum gets home she looks much more relaxed; Daisy has enjoyed some time alone with her Mum and Danny is brighter too.

1200 - Tina leaves Danny and eats her lunch en route to a multi-disciplinary team meeting where all the professionals involved in the care of seven year old Annabelle will be present.  Annabelle has Rhett’s Syndrome which causes her to have lots of seizures.  The meeting is taking place at Annabelle’s school and her social worker, teacher and her GP are there.  Each professional updates on their most recent interactions with Annabelle and her family and they discuss whether she is making the progress that everyone would expect.  The group agrees that Annabelle would benefit from attending some after school activities to help her gain confidence. The staff at the afterschool club will need to get to know Annabelle and learn how to care for her safely if she has a fit. Tina said that she will come along to a session with Annabelle to help her settle in.

1400 - Tina returns to her office base in Tring and spends around an hour updating patient notes on Infoflex (which is Rennie Grove’s Patient Database), reading and responding to emails and liaising with colleagues in the team.  She also takes a call from the father of one of her patients who wants some advice on his child’s condition. The child is just getting over a bad cold and is being sick after her feeds. Tina gives him some advice about changing how much and how often she is being fed.

1500 - Tina heads off to her final visit of the day.  This time it is a patient that has been newly referred to the children’s service as needing an urgent visit.  This is quite a distance from Tring and involves a long drive.  The new patient is Joe.  He has a tumour in his kidney and his family needs help with managing his symptoms.

Once introductions have been made Tina starts the meeting with an explanation of Rennie Grove Hospice Care and the work that its children’s nurses can offer the Joe and his family.  These include care that is tailored to Joe’s condition, medical support, pain management, help with administering medication and an on-call service that families have access to 24/7.  Tina explains that they will work closely with the children’s community nurses and the local hospice to make sure that Joe and his family get the help that they need to care for Joe at home.

1700 - After booking her next appointment with Joe, Tina heads home to her own family where, in between catching up the days’ news with them and getting the evening meal underway, she logs onto Infoflex to update Joe’s notes.

And as she is not working the following day, she emails the team to brief them on the key points of Joe’s condition that they may need to be aware of and phones the on call nurse to have a more detailed conversation about Joe in case his condition deteriorates overnight.

Tina said “No two days are the same for a Rennie Grove children’s nurse as things change so often.  As well as spending time providing clinical support to our children, we try to provide holistic care to the whole family too.  This might include acting as the link between all health and social care professionals involved in their child’s care; making sure parents, siblings and carers’ needs are looked after and working alongside them to deliver care to their child.  Our families trust us completely as highly skilled clinicians who know all about the complex needs of their child.  They feel reassured that they have access to a member of the team at any time of the day or night.  This is crucial when you are caring for a very sick child at home.”