Department of Health Sciences Evaluating Models of Care Closer to Home for Children & Young People who are Ill Royal College of Nursing Community Children’s.

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Department of Health Sciences Evaluating Models of Care Closer to Home for Children & Young People who are Ill Royal College of Nursing Community Children’s Nursing Forum 12 th March 2009 Professor Gillian Parker, Dr Karl Atkin, Dr Yvonne Birks, Kate Gridley, Dr Suzanne Mukherjee, Gemma Spiers

Background Policy Standard 6 of the NSF states that care should be timely, accessible and delivered closer to home where possible (DH, 2004) Delivering care closer to home has continued to be emphasised in subsequent DH policy (eg. Healthy Lives, Brighter Futures, DH 2009) What is already known? There is some literature (both evaluative and descriptive) on various interventions delivered in the community or home, but there is little formal research with the purpose of identifying, evaluating, and exploring current service models which deliver care closer to home.

Methods  Stage 1: Update and extend a systematic review of the evidence for care closer to home interventions  Stage 2: A review of descriptive literature describing UK models of care closer to home  Stage 3: National survey of services delivering care closer to home and four case studies  Stage 4: Economic modelling of the impact of delivering care closer to home

Systematic Review  A previous systematic review of the evidence for paediatric home care (Parker et al., 2002) found evidence to be poor  Current review aimed to:  Update pervious review  Extend previous review by including evidence for interventions targeted at children with acute conditions unlikely to have long term consequences  Over papers were identified, and 9 RCTs and 34 non-RCTs were included in the final review

Systematic Review  Models of care closer to home identified include  Home care for LBW infants, home care for type 1 diabetes, generic home care, home care for mental health problems, technological care, palliative home care, telemedicine, admission avoidance (home), admission avoidance (hospital), early discharge to the home, early discharge to outpatient settings  Poor level/quality of evidence  Missing outcomes  More robust research is needed to evaluate interventions

National Survey Screening QuestionnairePCTs (n=166)Acute Trust (n=143) Total (N=309) # (%) responding to screening questionnaire 92 (55.4)115 (80.4)207 (66.9) # (%) Refusing participation at screening stage 5 (3.01)5 (3.49)10 (3.23) # (%) trusts that DO provide a care closer to home service 71 (42.7)97 (67.8)168 (54.3) Questionnaire 2PCT provided services (n=144) Acute trust provided services (n=286) Total (N=430) # (%) responding to questionnaire 2 99 (68.7)209 (73.0)308 (71.6) Refusing participation for questionnaire 2 2 (1.3)0 (0)2 (0.4)

National Survey  A number of service models reported at the screening stage: 125 CCN/Home care teams (generic) 60 Specialist Nurses/Teams 33 Assessment units8 Complex needs teams 8 Child Development Units11 Community Paediatrics 11 Palliative care teams6 Special School Nurses 14 Technological support teams13 Continuing care teams 5 Day surgery3 Specialist Health Visitors 50 Condition specific services20 Neonatal services 27 Therapy services38 Other

Case Studies  Four PCTs have been selected  The populations of the case study sites will allow exploration of issues relating to ethnic diversity, deprivation and rurality.  Site = within top 10% deprived areas, Site = within middle or top 10% least deprived (IMD, 2007) UrbanUrban/Rural Mix Ethnically DiverseSite 1Site 2 Not ethnically diverse/has diversity in small numbers Site 3Site 4

Discussion  A wide range of service models which accomplish the objectives of bringing care closer to home have been identified through the systematic review and the survey  CCN teams and home care teams are the most dominant service models  Analysis of survey data will help to further ‘unpick’ these models to explore the different types of CCN teams and home care teams  Survey respondents have reported services which may not be traditionally conceptualised as a ‘closer to home’ model, but which do meet the objectives of bringing care closer to home  Analysis of the survey data will reveal the service structures of these less traditional models  Findings from the systematic review show that the evidence base is currently under-developed and misses important outcomes  More robust research evidence is needed to support implementation of care closer to home