AimsTo determine impact of austerity on families with disabled children across Europe.MethodsCross-sectional electronic surveys in 25 languages disseminated via professional and family networks in 32 European countries December 2016 – February 2017.Country comparison groups: United Kingdom (UK); countries where>50% professionals and families reported austerity cuts; remaining countries.United Nations International Children’s Emergency Fund (UNICEF) indicators of severe poverty in rich and middle-income countries were integrated into the families’ questionnaire: those reporting ≥four poverty indicators met severe poverty criteria.Level of dependency of disabled child accounted for in analysis, using IBM SPSS Statistics, v23.ResultsResponses received: 959 professionals (32 countries); 731 families (23 countries).Family respondents: 29% (215/731) UK; 28% (275/731) other countries reporting austerity cuts; 33% (241/731) remaining countries.45% (332/731) met UNICEF severe poverty criteria.More UK families reported worsening quality of services compared to three years ago (112/215; 52.1%), than families not in poverty with completely dependent disabled children from remaining countries (14/69; 20%) (p<0.001, χ2=57.1).More UK families in poverty with completely dependent disabled children reported access more difficult than three years ago than any other respondent groups to: therapies (85%, 33/39); support in education (67%, 26/39); social care support (85%, 33/39); welfare support and benefits (79%, 31/39). Significantly fewer respondents from remaining countries reported more difficult access to services (p<0.001 for all).Families and professionals from remaining countries generally perceived health, education and social care needs were better addressed than 10 years ago, whilst most of all other comparison groups reported needs in all areas to be less well met (p<0.001). UK families in severe poverty with completely dependent disabled children reported the greatest decline in how health, education and social care needs were met, compared to 10 years ago.ConclusionProfessional and family respondents across Europe experiencing austerity cuts reported a significant decline in quality of services received in the last three years and in how well health, educational and social care needs had been met over the last decade, compared to respondents from countries experiencing no austerity measures.UK responses were significantly worse than from other countries. UK families with the most dependent disabled children living in poverty generally reported the worst experiences overall.
AimTo determine the incidence of previously unrecognised chromosomal, neurodevelopmental (e.g. autism spectrum and attention deficit, learning disability) and other conditions in young people with behaviours reported as challenging referred for assessment in the paediatric disability clinic.MethodThis was a retrospective observational study. The hospital’s electronic clinic calendar was systematically searched to identify all young people referred because of challenging behavioursby the local Youth Offending Team andby Education, where medical advice was required for Education, Health and Care planning, September 2015–August 2017.Data were extracted from individual electronic medical records (table 1).Result21 males and 2 females aged between 13 and 18 years were referred by the Youth Offending Team. 16 males and 5 females aged between 4 and 15 years were referred by Education. All underwent Single Nucleotide Polymorphism (SNP) array testing along with blood and other investigations tailored to the individual.Abstract G420(P) Table 1 Condition identified Youth Offending Team Referrals (n=23) Education Referrals (n=21) Learning Disability (LD) confirmed 1 5 Red flags for LD awaiting outcome of further assessment 5 5 Autism spectrum disorder (ASD) confirmed 0 1 Red flags for ASD awaiting outcome of further assessment 7 2 Red flags for Attention Deficit Hyperactivity Disorder awaiting outcome of further assessment 0 5 Chromosomal condition confirmed 3 0 Awaiting SNP microarray result 1 2 New-onset Epilepsy confirmed 1 0 Acquired Brain Injury confirmed 1 0 New safeguarding referral 2 0 Additional diagnosis confirmed, already known neurodevelopmental diagnosis 4 (1 in 5) 3 (1 in 7) Total number of new needs identified 24 21 ConclusionThis small study suggests that young people who present with behaviours that challenge may benefit from paediatric assessment that includes screening for red flags of neurodevelopmental, chromosomal and other conditions and for safeguarding concerns. Behaviours that challenge should prompt paediatric assessment undertaken with the same diligence as for physical symptoms and signs, even in those with already identified neurodevelopmental conditions.
Aims To establish whether there is variation in health care for children and young people with cerebral palsy (CP) across the north of England. Methods Retrospective case note review of 389 children and young people registered on the North of England Collaborative Cerebral Palsy Survey (NECCPS) living in 15 geographical districts, born 1995-2002, with subsequent data validation by clinicians involved in their care. Data was collected on magnetic resonance imaging (MRI) of brain (marker of aetiological assessment), hips, spines, pain, growth, and nutrition. Results The audit sample was representative of all children and young people registered with the NECCPS across a range of clinical and demographic factors. 221/389 (56.8%) children and young people had an MRI overall, with significant variation (p<0.001) in MRI rates between districts (figure 1). Abstract G171 Figure 1 259/389 (66.6%) had a discussion about pain recorded within the last 2 years. 110/126 (87.3%) cases where pain was present, had a management plan (figure 2). Abstract G171 Figure 2 Those from the socio-economically most deprived quintile were significantly (p<0.05) less likely to have had a discussion about pain than those in the least deprived quintile (figure 3). Abstract G171 Figure 3 69/373 (18.5%) had some degree of hip migration, of which 20.3% had complete hip dislocation. There was no record of hip status in 16/389 (4.1%). There was significant (p<0.01) variation between districts in recording of state of spine; there was no record in 24.4% of the sample. 31/66 (47%) of those with a spinal curvature were monitored by a spinal surgeon and 54/353 (33.1%) had their hips monitored by an orthopaedic surgeon, with inter-district variation in access to spinal and orthopaedic surgeons. 35/383 (9.1%) had received gastrostomy for feeding but there was no difference in Body Mass Index between this group and the rest of the sample. Only for 60% of the sample, weight was recorded within the last year. 119/389 (31%) had weight percentiles ascertained and recorded with a significant (p<0.001) inter-district variation (figure 4). Abstract G171 Figure 4 Conclusion There is variation in important aspects of health care for children and young people with cerebral palsy across the north of England. There is a need to work towards more equitable health care for the best health outcomes.
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