Enhanced symptom management clinicparental evaluation. Does it help?

Enhanced symptom management clinicparental evaluation. Does it help?

Thompson S; Roe L

Archives of Disease in Childhood

2023

child; hospital admission; human; pain; seizure; bodily secretions; dystonia; questionnaire; conference abstract; teleconsultation; thorax; access to information; running; video consultation

Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A paper questionnaire was sent to all families who were attending the enhanced symptom management clinic and were still alive. This was followed up by a QR link for those who hadn't responded to the original paper questionnaire. A shorter questionnaire was sent to health care professionals involved with the care of these CYP for their opinion as well. Results The number of times the CYP/family had attended the clinic varied from 1- 6 times with a combination of face to face, video consultation and telephone consultation. Has the clinic helped in the management of your child/ young person's symptoms? Responses were very helpful or helpful. The common themes around what was helpful or useful with regards to attendance at the symptom clinic related to: * Emergency planning to help avoid hospital admission for symptoms including- pain, secretions, dystonia, feed intolerance, seizures, chest management * Holistic planning * Symptom plan development to make emergency hospital admissions more straight forward * Clarity around medications - what and when to give * Families felt listened to and supported by the clinician's delivering the clinic Conclusion The enhanced symptom management clinic has been running since November 2020 and has provided a different environment to help support and manage these complex CYP. Families feel confident in how to manage their children more at home and have permission to alter medications if required depending on what their child's symptoms are like. Utilising video and telephone consultations has also enabled families' access to their clinician without the challenges involved with getting a complex needs child out of the house to a hospital. Ward doctors in training have ready access to information on how to manage these complex patients when they come in unwell, making emergency admissions less stressful for them and the families. Symptom plans continue to evolve and now also include some information about what the CYP is like when they are well and how they would usually communicate. These clinics aren't there to take the place of their specialist, but to help with care coordination and provide an holistic overview of what the child is experiencing symptom wise in addition to more specialist palliative symptom management.

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October List 2023