The Paedaitric and Congenital Cardiac (PaCC) research network, launched in 2024, is a network of Nurses, Midwives and Allied Health Professionals (NMAHP) committed to improving the lives of children, young people (CYP) and adults with congenital and inherited cardiac conditions and their families, through collaboration, support and promotion of research in the field.
The NMAHP research culture, capacity and capability is growing in this area, broadening and strengthening the ability to address the top 10 research priorities in children and adults with Congenital Heart Disease, as identified through the James Lind Priority Setting Partnership (Drury et al 2022).
PaCC will represent and develop the expertise of NMAHP researchers, foster global research collaborations, and create multi-centre opportunities for research to positively impact on outcomes, safety and experience.
Aims:
- Enhance involvement and engagement with patients and members of the public
- Involvement and engagement with a range of stakeholders including youth groups, National and International charities and parent/family support groups, health care practitioners, National Health Service Specialist Commissioners, policymakers, Department of Health/government representatives.
- Address research priorities identified by CYP and adults with congenital and inherited conditions and their families
- Identify gaps and priorities for future NMAHP research
- Recognise and address the health and social inequalities affecting the lives of CYP, adults with CHD, inherited or acquired cardiac conditions and their families
- Ensure PaCC research findings and knowledge generated through research is mobilised within health and social care and the impact of this is measured
- Grow and develop NMAHP PaCC research
- Encourage national and international PaCC research collaborations between NMAHP and other professional groups
- Develop a supportive research community for NMAHP, aiding development of research knowledge, skills, and understanding
- Raise awareness of the contribution that PaCC research offers academia, policy, practice, advocacy, and clinical/medical research
Membership: This network includes nurses, midwives and allied health professionals (NMAHP), early/postgraduate, mid-career, and senior academics, who are interested, engaged in or leading research within congenital or inherited cardiac services, in the United Kingdom, all Ireland and Internationally.
Network Lead:
Professor Kerry Gaskin, Professor of Congenital Cardiac Nursing, Birmingham City University
Northwest, North Wales and The Isle of Man Congenital Heart Network
Reader/Associate Professor Robyn Lotto, Liverpool John Moores University
Dr Rebecca Hill – ANP, Karen Erlandson-Parry _Nurse, Michelle McLaren – Lead Nurse; Sarah Ellison, Cheshire and Wirral Partnership NHS Trust
West Midlands CHD Network
Nigel Drury University of Birmingham Will McDevitt, Clinical Physiologist; Stephanie Clarke, Physiotherapist; Carly Tooke & Helen Winmill Research Nurses;
Paul Nix And Alice Temporin – Birmingham City University
OneHeart CHD Network – London:
Professor Jo Wray , Great Ormond Street Hospital for Children, London
Rebecca Mercaldi ACHD -Barts; Sophie Arbos; Ella Field; Jennifer Tollit – GOSH
Lifelong CHD Network – London: East: South East
Lynda Shaughnessy – Lead Nurse; Catherine Renwick, Consultant Nurse; Emily Ellis – ANP; Sophie Tooth Fetal Nurse Specialist;
Scottish CHD Network:
Donna Nelson – ANP; Andrea Pujazon-Rosa trainee ACP
North East and North Cumbria:
Kaye Walsh – Lead Nurse; Karen Caulfield – Physiotherapist
South Wales and South West CHD Network:
Alison Wood – Cardiac Educator
Thames Valley and Wessex CHD Network:
Katy Morton – ANP; Louisa Neilsen Physiotherapist