The National Haemoglobinopathy Panel (NHP) supports Haemoglobinopathy Coordinating Centres (HCCs) to provide expert advice on options for individuals with complex needs living with SCD. The NHP also supports decision making on novel treatments, improving access to interventions and clinical trials. HCC networks must provide multi-disciplinary expertise to the NHP to ensure complex cases and cross-organisational issues/risks are discussed and learning is shared.
The HCC provides a coordinated leadership function, supporting Specialist Haemoglobinopathy Teams (SHTs) and Local Haemoglobinopathy Teams (LHTs) in the delivery of clinical care. Each HCC network will provide strategic oversight for the whole lifetime pathway of care. An HCC must also have been commissioned as an SHT.
The model of care is about the effectiveness of the SHT, LHT and HCC in delivering equity irrespective of where patients live through governance to improve access to services and expertise.
HCCs work to ensure that multi-disciplinary expertise is extended to all service users within their network footprint through expert training, clinical Multi-Disciplinary Teams (MDTs). The HCC will be responsible for the governance of the MDT. This includes developing and agreeing terms of reference, minute taking and, where appropriate, onward referrals to the National Haemoglobinopathy Panel.
The N E & Y HCC meets with their SHTs and LHTs twice a year to discuss issues relating to strategy and governance in the Business Meetings.
The number of SHTs and LHTs within an HCC’s network footprint will vary depending on geography and disease prevalence.
The North East and Yorkshire Haemoglobinopathy Coordination Centre
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