Widespread service fragmentation for patients and families with tuberous sclerosis complex (TSC) in the Republic of Ireland.

Background: Tuberous sclerosis complex (TSC) is a rare approximate 1:6000 birth incidence, a genetic disease with a wide variability of physical and neuropsychiatric symptoms. Patients require lifelong care from multiple healthcare specialities, for which International and United Kingdom (UK) TSC consensus recommendations exist. Personalised care delivered by a centralised coordinated team of TSC experts is recommended. There is no such service for the estimated 600 TSC patients in the Republic of Ireland (ROI) and there is a paucity of information regarding the healthcare of this group. Purpose: Evaluate the baseline care of patients with TSC attending epilepsy services in the Republic of Ireland (ROI) against UK TSC consensus recommendations. Methods: Patients with a diagnosis of TSC attending 12 adult and paediatric epilepsy centres in the ROI were identified. Clinical audits measured the baseline care of a subset of these patients against UK, TSC clinical recommendations. Data was anonymised and analysed at Trinity College Dublin. Results: One hundred thirty-five TSC patients attending twelve epilepsy centres were identified. Adults (n = 67) paediatric (n = 68). The care of 83 patients was audited (n = 63 ≥ 18 years) and (n = 20 < 18 years). Many baseline tests were completed, however, they required intra or interhospital referral. Care appears fragmented and there was no evidence of formal disease surveillance plans. Conclusions: The number of TSC patients attending epilepsy services is lower than expected (n = 135). Specialist services and treatments for TSC are available through informal referral pathways. Although UK, TSC consensus baseline recommendations are roughly adhered to, care is fragmented. Increased coordination of care could benefit disease management. Supplementary Information: The online version contains supplementary material available at 10.1007/s44162-024-00049-8.

The use of basic life support kits in general practice.

Donegal is a predominantly rural area with many general practices situated considerable distances from a district hospital. Fifty Life Support Kits were supplied to General Practitioners by the Donegal Pre-Hospital Emergency Care Project in 1995 following appropriate training. This is a survey of the use of items in these kits. To determine the frequency of use of the equipment, the type and location of the incidents, the kit items utilised and patient outcome. Retrospective questionnaire survey of 49 participating GPs. 208 patient incidents were described by 46 doctors (average 4.5 per doctor) Most incidents were outside the surgery (88.24%). Road Traffic Accidents (36%) were the commonest reason for use, followed by cardiac emergencies (28%), other medical emergencies (14%) and other trauma (11%). All items except the burns sheet had been used. The most used items were cannulae, (64.7% of incidents) and fluids (50.9% incidents). Other useful items were emergency drugs, dressings, collars, airways, suction and torch. Regarding outcome, 162 patients required hospital transfer and 25 died. Eleven did not require hospital treatment. The participating doctors judged that the basic life support kits positively contributed to outcome in 79.4% of cases described. Basic Life Support kits contribute to the pre-hospital care of patients when used by GPs with immediate care training.

Relatives' lived experiences of complementary therapies in a critical care department--a phenomenological study.

This phenomenological study examined relatives' lived experiences of complementary therapies in the Department of Critical Care Medicine at Royal Hobart Hospital. Participants in the study, 20 relatives of critically ill patients, were involved in a non-structured, audiotaped interview. Subsequently, transcripts were analysed using a phenomenological transformative process to identify common themes in the text. Study findings suggested four emerging conceptual categories, which with further analysis uncovered the essence of the phenomenon as extending and enriching a caring atmosphere.