Drive the delivery of nationally consistent approaches to care, envisaged by the Clinical Reference Group on Haemoglobinopathies, and approved by NHS England/NHS Specialised Commissioning.
Coordinate the actions taken at Specialist Haemoglobinopathies Teams (SHT) and Haemoglobinopathies Coordinating Centres (HCC) levels to deliver access to specialist oversight and to reduce unwarranted variation.
Provide Specialist Haemoglobinopathies Teams (SHTs)/ Local Haemoglobinopathy Teams (LHTs) and (Haemoglobinopathies Coordinating Centres (HCCs) access to national expert clinical opinion with regard to the treatment of complex patients.
Support the introduction of commissioned innovative therapies by acting as a national panel to consider individual patients most able to benefit and to enable patients to have access to these therapies, irrespective of where they live.
The National Haemoglobinopathy Panel (NHP) was commissioned, in October 2019, as part of a new model of care to support access to specialist services and clinical expertise, aiming to provide equitable access across the country. The establishment became operational in January 2020.
The Panel is made up of a multidisciplinary group of Health Care Providers and the primary role is to host the national Multidisciplinary Team meeting (MDT), providing expert advice to complex cases within Haemoglobinopathies (particularly Sickle Cell Disorder and Thalassaemia) and Rare Inherited Anaemias.
Secondarily, the NHP is a means to actualise the aims of NHS England/Improvement within the realm of Haemoglobinopathies, be it through supporting new therapy initiatives, impacting policy and guidelines, being an information conduit between NHS England and other core NHP network members, or via programmes such as the NHP Transcranial Doppler (TCD) Quality Assurance programme, working with the National Haemoglobinopathy Registry (NHR) and MDSAS.
The strength of the NHP is the strong network which binds the members within, including the HCCs, as well as the strategic bonds it holds with other stakeholders within the haemoglobinopathies community, such as patient representation groups (Sickle Cell Society & UK Thalassaemia Society), Nursing Groups (STANMAP-Sickle Cell & Thalassaemia Association of Nurses, Midwives and Allied Professionals) and close engagement with organisations such as the UK Forum on Haemoglobin Disorders (UKFHD) and the Sickle Cell and Thalassaemia All-Party Parliamentary Group (SCT APPG). These are to name a few.
NHP Leadership/Core Team structure
NHP Wider Network
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