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.
The National Haemoglobinopathy Panel (NHP)
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 (Sickle Cell Disorder and Thalassaemia) and Rare Inherited Anaemias.
Actualise the aims of NHS
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, providing a national perspective via activity/case data, 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 Register (NHR) and MDSAS. The NHP Cellular Therapy subgroup lends expert advice, advocacy, and monitoring for the approval and treatment processes of haemoglobinopathy transplantation and cellular therapy centres nationwide.
Our Panel
Objectives
The NHP Multidisciplinary Team (MDT), with membership drawn from Haemoglobinopathies Coordinating Centres (HCC) across the nation, has four main objectives:
Consistency
Drive the delivery of a nationally consistent approach to care envisaged by the Clinical Reference Group and approved by commissioners.
Harmonisation
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.
Expertise
Provide SHT and HCC access to national expert clinical opinion with regard to the treatment of complex patients .
Innovation
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.
NHP Organisational Structure and Wider Network
Our HCCs
The NHP is made up of experts from all the HCCs (Haemoglobinopathies Coordinating Centres) that oversee services in all regions across the nation. While separate organisations, there is a symbiotic relationship based on aligned objectives. There are 10 Sickle Cell Disorder HCCs and 4 Thalassaemia HCCs. Each HCC oversees a number of Haemoglobinopathy teams of varying resource. Further information is available from NHS England.
Sickle Cell Disorder HCCs
| Haemoglobinopathies Coordinating Centres | Host Trust | Website | |
|---|---|---|---|
| North West | Manchester University NHS Foundation Trust | link | - |
| North East and Yorkshire | Sheffield Teaching Hospitals NHS Foundation Trust in partnership with Sheffield Children's NHS Foundation Trust | link | sth.neyhcc@nhs.net |
| East Midlands | University Hospitals of Leicester NHS Trust | link | uho-tr.emstn-hcc@nhs.net |
| West Midlands | Sandwell and West Birmingham Hospitals NHS Trust, and sub-contracting to Birmingham Women's and Children's Hospital | link | - |
| East London and Essex | Barts Health NHS Trust | link | - |
| South East London and South East | King's College Hospital NHS Foundation Trust in partnership with Guys and St Thomas' NHS Foundation Trust | link | - |
| West London | Imperial College Healthcare NHS Trust in partnership with London North West University Healthcare NHS Trust and St George's University Hospitals NHS Foundation Trust | link | imperial.WLHCCinfo@nhs.net |
| North Central London and East Anglia | University College London Hospitals NHS Foundation Trust in partnership with Whittington Health NHS Trust and North Middlesex University Hospital NHS Trust | link | uclh.info.redcellnetworkhcc@nhs.net |
| Wessex and Thames Valley | Oxford University Hospitals NHS Foundation Trust | link | WTV.HCC@ouh.nhs.uk |
| South West | University Hospitals Bristol NHS Foundation Trust | link | ubh-tr.haemoglobinopathybristol@nhs.net |
Thalassaemia (& Rare Inherited Anaemia) HCCs
| Haemoglobinopathies Coordinating Centres | Host Trust | Website | |
|---|---|---|---|
| North | Manchester University Hospitals NHS Foundation Trust | link | |
| Midlands | Sandwell and West Birmingham Hospitals NHS Trust, and sub-contracting to Birmingham Women's and Children's Hospital. | link | uho-tr.emstn-hcc@nhs.net |
| London and South East | Barts Health NHS Trust | link | |
| London, South Central and South West | University College London Hospitals NHS Foundation Trust in collaboration with Imperial College Healthcare NHS Trust, St George's University Hospitals NHS Foundation Trust and London North West University Healthcare NHS Trust. | link | uclh.info.redcellnetworkhcc@nhs.net |
Patient Representative Groups
Terms of reference
The guiding terms of reference for the NHP are currently being reviewed and will be updated on this site in due course.
