Catherine has given us this description of a typical week as Ben’s Nurse:
- Catch up with emails and any unfinished paperwork from the previous week.
- Finalise the care plan for tomorrow’s school visit and plan my journey to the school.
- Children’s arrhythmia clinic – I have one of the paediatric advanced nurse practitioner trainees shadowing me in clinic today as she is undertaking her non-medical prescribing course and needs to observe other non medical prescribers in practice. I see two children for nurse led SVT (supraventricular tachycardia –a non life threatening heart rhythm abnormality which causes the heart to beat excessively fast) follow up. One who has been symptom free can be discharged from the clinic. The other is symptomatic and needs to be managed with vagal manoeuvres (stimulation of the vagal nerve which can reduce the heart rate and prevent a prolonged episode of SVT and the need for hospital attendance)
- Complete dictation for clinic letters from the morning and deal with emails and phone calls
- Deal with phone messages/calls and emails. Phone calls today include giving advice to parents for children who are symptomatic with either too fast or too slow a heartbeat. For one child I book an earlier outpatient appointment; for another I have asked Mum to monitor and let me know in two weeks if there is no improvement. If so I will arrange a local 24-hour ECG monitor (electrocardiogram – recording of the heart’s electrical impulses) to further assess his heart rhythm. I amend and sign the typed clinic letters from Monday’s clinic so they can be sent out to the local GP, paediatricians and parents/patients.
- Give new staff nurses orientation presentation to educate them about my role. This provides me with the opportunity to tell them about the origin of my role, that it is externally funded by The Ben Williams Trust, what my remit is and when and how to contact me for patient support.
- School visit for a child with SVT. School care plan provided for staff however the visit has identified some further areas to include in the care plan.
- Inherited cardiovascular disease clinic. In this clinic we see adults and children (with the aim to see family groups together) who are affected with an inherited condition. I identify which children require ECGs and liaise with the technicians so that the tests are completed before they see Dr Till or one of her junior doctors. I provide written information to patients and my contact details for ongoing support depending on their need.
- Meet with British Heart Foundation staff to discuss teen activity weekend at the end of August that one of the other cardiac nurse specialists and I are helping with.
- School visit for a child with SVT. This visit has identified that the child is having difficulty in distinguishing between a normal fast heartbeat (such as occurs during exercise) and SVT. I am therefore arranging for some repeat investigations (an exercise test and a two week ECG recording). When the results are received I will be able to review them and identify any abnormalities to correlate with patient symptoms. This should allow me to reassure the patient, his mother and the school staff so we are clear when he has SVT. This should also prevent him visiting the school office and missing lesson time for changes in heart rate that are not SVT. I have reassured the staff that he should be treated normally and encouraged to participate in physical activity as the other children do.
- Document outcome from school visit and request the investigations discussed. School care plan further amended and emailed back to school and school nurse. Check emails and phone messages.
- Attend St Georges Hospital for the monthly combined paediatric inherited cardiovascular disease clinic. This is a shared clinic with the adult inherited cardiovascular disease team at St George’s and our paediatric team at The Brompton. There are no paediatric cardiology specialists at St George’s so Dr Till and I attend to share our expertise. Families are seen in this clinic; adults by the adult team and the children by Dr Till and myself. Some of the investigations required for these children have to be arranged at The Brompton therefore I facilitate this. I provide written information and my contact details to the families and often liaise with the children’s school in ensuring they are able to meet their full potential at school and maintain as normal a life as possible within the boundaries of their heart condition.
- Finalise changes to SVT care plan from Tuesday’s school visit and email this back to the school. Deal with emails.
- Meet with manager to discuss progress and to keep her updated on any problems that have arisen with workload, patients and the developing inherited cardiovascular disease service.
- Meet with clinical psychologist and a patient on my caseload who has a pacemaker. He is having difficulty at school so is to undergo a psychometric assessment. The results will be fed back to his school in the hope that some additional support can be offered to assist his learning if found to be necessary. I attend as I have already performed a school visit, to answer any questions about his heart condition that the psychologist can’t answer and also to learn about the process of psychometric assessments.
- I make contact with a few more schools for children with newly diagnosed conditions and arrange to prepare care plans to send to them. Based on the information in the care plans the schools will then inform me if they would like further support with a school visit. I document the discussion with school staff on the nurse specialist database.
- I draw up a family tree for a newly diagnosed family in our inherited cardiovascular disease service based on the information they have provided in a family questionnaire. I will ensure copies of this family tree are available in each family member’s notes ahead of their initial outpatient appointments.