Composition of the subgroup
The composition of the subgroup was designed to reflect the range of professions and sectors that provide support to babies and their families following discharge from heart surgery in the first year of life, including specialist centres, primary and secondary care providers, community health services and charitable organisations. The subgroup consists of selected members of the Intervention Development Group, co-applicants on the IHS and invited representatives from other professions who have had previous involvement in IHS.
Dr Nick Barnes, Consultant PEC (Northampton General Hospital).
Hannah Charrot, Community Children’s Nurse (Cambridgeshire Community Services NHS Trust).
Jan Pennington, HV (Barts Health NHS Trust).
Sally Hull, GP and Reader in Primary Care (Jubilee Street Practice, NHS East London and the City).
Rodney Franklin, Consultant Paediatric Cardiologist (The Royal Brompton Hospital).
Liz Smith, Lead Advanced Nurse Practitioner (Great Ormond Street Hospital for Children NHS Trust).
Suzie Hutchinson, Parent/Patient Representative (Chief Executive, Little Heart Matter).
Kate Bull, Acting Principal Investigator on the Infant Heart Project (Great Ormond Street Hospital for Children NHS Trust).
Facilitator
Sonya Crowe, Operational Researcher (University College London).
Minutes
Rachel Knowles, Paediatric Epidemiologist (UCL Institute of Child Health).
Observers
Jo Wray, Health Psychologist (Great Ormond Street Hospital); Simon Turner, Health Services Researcher (University College London).
Background to the subgroup
Over the last 2 years, the IHS [funded by the National Institute for Health Research (NIHR), NIHR project number 10/2002/29] has been gathering evidence about the barriers to accessing, and challenges to providing, support for infants and their families following discharge from cardiac surgery in the first year of life. It has also generated evidence to inform the identification of high risk infants based on factors available to clinicians at the time of discharge. This evidence base was intended to inform recommendations for service improvements aimed at reducing adverse events (death in the community or emergency readmission within the first year post discharge) in this patient population.
The Intervention Development Group has met on five occasions to review and critique the evidence gathered from the study and to propose service improvements to address the challenges and barriers identified in the data. Subsequently, a workshop was held for families of babies that had experienced an adverse event in order to elicit their suggestions for service improvements to address these challenges too.
The study research team has drafted a set of data-driven ‘service challenges’ linked to ‘recommended service improvements’ using the gathered evidence and proposals from the Family Workshop and Intervention Development Group.
The subgroup’s responsibilities
Building on the previous work of the Intervention Development Group and the IHS research team, the subgroup has been convened in order to assess the draft recommendations for service improvements and agree upon a final set that they will propose to the wider Intervention Development Group for endorsement.
More specifically, the subgroup is tasked with the following:
to review the draft recommendations – assess the feasibility and acceptability of each draft recommendation for service improvement
to assess the set of draft recommendations as a whole within the context of patient risk groups and targeting recommendations (setting priorities)
to agree a final set of recommendations to circulate amongst the wider Intervention Development Group for comments and endorsement
to develop a strategy for wider engagement and dissemination of the agreed recommendations (within the context of the NHS England CHD Review).
These terms of reference were reviewed and agreed by the subgroup in their meeting on Monday 29 September 2014.
