Haemoglobin Disorders Programme 2019-20

This is the fourth national review of services for patients with Haemoglobin Disorders undertaken by QRS since 2010. The programme was overseen by the UKFHD Steering Group and facilitated by QRS. This programme piloted a new approach of using a risk profiling methodology to identify services who would be selected for a peer review visit.

A total of 65 services providing care for people with the haemoglobin disorders sickle cell and / or thalassaemia across the UK and Eire submitted a self-assessment against the Quality Standards for Health Services for People with Haemoglobin Disorders V4 (October 2018) and relevant evidence for 17 key standards in February 2019. Each submission was reviewed by a multidisciplinary panel from the UKFHD Steering Group and a decision made to review based on the level of compliance achieved for each service. All services who met < than 50% of the key standards were selected for a review visit. A percentage of services who met 50% – 75% and greater that 75% of the key standards were also selected for a review.

In total 25 review visits took place across a range of adult, children and young people services between July 2019 and March 2020. The review programme was expected to complete in April 2020; however this has been ended early because of the NHS response to the Covid 19 pandemic.

The review visit days were led by Clinical Leads appointed by the UK Forum on Haemoglobin Disorders, Dr Subarna Chakravorty and Dr Mark Velangi for children and young people and Dr Emma Drasar and Dr Rachel Kesse-Adu for adults and supported by Sarah Broomhead, QRS Assistant Director.

The contribution of all to this programme is gratefully acknowledged and could not have taken place without the support of many people and organisations: the UK Forum on Haemoglobin Disorders, the UK Thalassaemia Society, the Sickle Cell Society; the commitment and dedication of the Programme’s Clinical Leads, cooperation of the teams which were reviewed; the willingness of reviewers to give their time and expertise and their employing organisations to release them.

Reports of the review visits can be found on the QRS website. View reports.

An evaluation of the risk based process used for this programme, and overview of the review programme findings is being produced.