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BackgroundIntrathecal baclofen (ITB) is a useful treatment for hypertonia where non-invasive treatments have been ineffective or poorly tolerated. There is an absence of national guidance on selection criteria and a lack of literature regarding patient characteristics and treatment details for children and young people (CYP) receiving ITB therapy in the UK and Ireland. We aimed to gather patient and treatment characteristics for CYP receiving ITB in the UK and Ireland.MethodsAn electronic survey was sent to all paediatric ITB centres in the UK and Ireland. Anonymised data were returned between December 2019 and April 2020. CYP >16 years and those awaiting ITB pump removal were excluded from the dataset.Results176 CYP were identified as receiving ITB therapy across the UK and Ireland. The majority of CYP with ITB pumps were non-ambulant (93%) with a diagnosis of cerebral palsy (79%). Median age of ITB insertion was 9 years; median current age was 14 years. 79% of CYP had significant spasticity, 55% had significant dystonia. The most commonly used ITB dosing modes were continuous (73%) and flexible (23%).ConclusionsITB pumps were most frequently used for non-ambulant CYP with cerebral palsy and existence of spasticity and/or dystonia in the UK and Ireland. Most CYP were receiving a continuous dose of ITB. There is significant variation in the number of paediatric ITB pumps across UK and Ireland. There is a need for development of nationally accepted paediatric referral criteria and clinical standards for ITB use.

Objective To assess changes between 2012 and 2014 in the quality of paediatric clinical and nursing care for UK children and young people affected with seizures and epilepsies. Methods Epilepsy12, a UK wide audit, commenced in 2009 with the aim of evaluating epilepsy care against NICE and SIGN guidelines. All NHS hospital and community paediatric services managing children with epilepsy were invited to participate. National key recommendations and local action plans were made after Round 1. Round 2 was undertaken between 2013 and 2014 to assess changes since Round 1 and results are reported here. Children referred for first EEG were used to find a new cohort of eligible children aged 1 month to 16 years receiving a first paediatric assessment between January and April 2013 for afebrile paroxysmal episodes. Retrospective case-note analysis was undertaken using a specifically designed web-based platform and audit pack. Service descriptor data were collected from secondary services on census day, 1 January 2014. Patient reported experience measure (PREM) questionnaires were collected from sequential children with epilepsy and their carers/parents attending clinics between February and March 2014. Results 192/196 paediatric services enrolled. 186 units provided service descriptor data, 174 clinical audit data and 145 PREM data. The clinical cohort consisted of 3449 patients; median age 5.2 years; male: female 55:45%. Anonymised PREM data were received from 2335 parents, carers, children and young people. 45% of first assessments occurred within an acute presentation. 35% of children had epilepsy diagnosed by 12 months. 22.6% of children had a documented neurodisability. 68% of paediatric services now have at least one Epilepsy Specialist Nurse (ESN). There has been a significant increase in percentage of children having ESN input; access to a paediatrician with expertise in epilepsies; appropriate assessment, classification and investigations in 2014 compared to 2012. PREM data showed 88% (1897/2148) overall satisfaction with services; 20% thought that staff are not good at working together. Conclusion There is evidence of significant improvements in the provision of medical and nursing epilepsy care. However, many children still do not receive recommended practice and access fully resourced paediatric epilepsy services.

Aims To assess the quality of paediatric care for UK children, young people and families affected by epilepsies and seizures. Methods In 2009, the RCPCH ‘Epilepsy 12’ Audit began a pragmatic audit of UK paediatric epilepsy care against NICE and SIGN guidelines. A project board representing UK stakeholders invited participation from all relevant local NHS hospital and community paediatric services. Audit domains were: 1. clinical service description; 2. 12 clinical performance indicators and 3. a specially developed patient-related experience measure (PREM). The service description was completed at the onset. Lists of children referred for electro-encephalography helped identify eligible children aged 1 month to 16 years who had received a first paediatric assessment for afebrile paroxysmal episode (s) within a 6 month period from 2009. Retrospective data from case-notes review of the subsequent 12 months were entered onto a web-based database. Children commenced on anti-epileptic medication were invited by letter to complete an anonymised PREM questionnaire. Results Data collection was completed in November 2011. All 197 audit units and 21 regions enrolled. Participation rates were 98% (193/197) for clinical service description, 94% (186/197) for clinical audit and 87% (172/197) for PREM domains. The clinical cohort consisted of 4991 patients, median age 6.3 years, M:F 54:46%. 44% (2175/4991) of first paediatric assessments occurred within an acute presentation. 19% (974/4991) of children had a documented neurodisability. Diagnosis of paroxysmal episode (s) at first assessment was recorded as: 46% (2298/4991) epileptic; 18% (897/4991) non-epileptic and 36% (1796/4991) uncertain. Diagnosis after 12 months of care was recorded as: 6% (312/4991) single or ‘single cluster’ epileptic seizure (s); 36% (1774/4991) 2 or more epileptic seizures; 44% (2198/4991) non-epileptic and 14% (707/4991) uncertain. Conclusion The paediatric epilepsy community, including acute and community services and patient organisations, has contributed to the largest description of the performance of paediatric epilepsy care in the UK to date. From the preliminary analysis, just over half the children with paroxysmal episode (s) presented non-acutely with one third eventually diagnosed as having recurrent epileptic seizures. Over the 12 months of follow-up, diagnosis varied and diagnostic uncertainty decreased. Final results will be placed in the public domain in September 2012.