It gives us great pleasure to share the draft version of the Haemoglobin disorders Peer Review Quality Standards for wider consultation. As you know, over the last decade, we have developed several iterations of the Quality Standards for the care of people with sickle cell disease and thalassaemia, which have set the benchmark for the quality of care provided in such disorders. Services have developed and have been reviewed against these Standards.
The attached Standards were developed following the 2018-2020 Peer Review cycle, and reflects lessons learnt from that review. We have separated the paediatric and adult Standards, although there are many that are common with both age-groups, the differences were sufficient to warrant separate Standards. We hope you will find it reflects services better. The new Standards also reflect the new haemoglobinopathy commissioning structure in England and separate Standards have been allocated to HCCs, SHTs and LHTs. We have also attempted to include more elements of outcome -based Standards in the hope that this will further assist in improving clinical care for patients with haemoglobin disorders. This also mirrors the NHS England ‘dashboard’ requirements.
Please find attached an Excel file with the draft Standards for your review. We also attach a proforma to this email that will allow you to comment on any aspect of the Standards. We hope many people will review and comment on these draft Standards allowing a diverse and inclusive consultation. Patients, parents and users may wish to review the Standards numbered in the 100’s – these deal directly with the quality and depth of patient information about various aspects of the service.
Please send comments by 14th August 2021 using the proforma or emailing us directly to UKFHD1@gmail.com
Subarna Chakravorty Farrukh Shah
Peer Review Programme Lead Chair, UK Forum on Haemoglobin Disorders
Dr Farrukh Shah
Department of haematology