Thalassaemia Society Support
Infected Blood Inquiry · Infected Blood Inquiry Final Report · Issued 20 May 2024 · Addressed to: UK Government
Government responseNorthern Ireland Executive: Accepted in part (May 2025)Welsh Government: Accepted in part (May 2025)Scottish Government: Accepted in part (May 2025)UK Government: Accepted in part (May 2025)
DeliveryNo statement from UK Government found
Recommendation, verbatim from the inquiry
●Inquiry recommendation
Particular consideration be given, together with the UK Thalassaemia Society and the Sickle Cell Society, to how the needs of patients with thalassaemia or sickle cell disease can best holistically be addressed.
Infected Blood Inquiry, Infected Blood Inquiry Final Report · 20 May 2024 Source PDF →
Published evidence summary
AI-generated evidence summary
The Inquiry recommended addressing the holistic needs of thalassaemia and sickle cell disease patients collaboratively. In May 2025, the UK Government stated that National Health Service (NHS) England established a programme reviewing care pathways and created advisory groups to work with the UK Thalassaemia Society and the Sickle Cell Society (Cabinet Office response, May 2025). It noted that while initial funding supports acute crisis care, additional funding needed to fully implement the programme has not yet been identified (Cabinet Office response, May 2025). Also in May 2025, the Scottish Government reported engaging networks under its Rare Disease Action Plan, the Welsh Government outlined existing hereditary anaemia services, and the Northern Ireland Executive reported exploring screening options while using London specialists (Scottish Government response, May 2025; Welsh Government response, May 2025; Northern Ireland Executive response, May 2025). The record holds nothing dated later than the response of May 2025 (Northern Ireland Executive response, May 2025).
Sources
AI-generated summary of the record on this page, checked by a second model and automatic checks, 5 Oct 2026.
Government response
●Northern Ireland Executive · Accepted in part · 14 May 2025
The population affected by thalassaemia and sickle cell diseases resident in Northern Ireland is very small and is considered a low prevalence area. However, this population is expanding and therefore, the Public Health Agency is currently looking at the potential for screening pregnant women for sickle cell and thalassaemia. At present, there aren’t any local clinical specialists in Northern Ireland, and therefore, no engagement. A Service Level Agreement is however in place with St Thomas’ Hospital, London.
Extract from: Full Government Response to the Infected Blood Inquiry's May 2024 Report
●Welsh Government · Accepted in part · 14 May 2025
In Wales the Hereditary Anaemia Service: The Sickle Cell & Thalassaemia Centre was set up in 1990 to provide screening, counselling and support services. The multi-disciplinary team works with health boards to ensure patients receive quality-based service appropriate for their needs. The paediatric team provides care from birth until patients transfer to the adult team.
Extract from: Full Government Response to the Infected Blood Inquiry's May 2024 Report
●Scottish Government · Accepted in part · 14 May 2025
The Scottish Government’s Rare Disease Action Plan aims to improve the care and treatment for people living with rare conditions, including sickle cell and thalassaemia. The Scottish Government is engaging with existing networks in Scotland, including the Scottish Paediatric and Adult Haemoglobinopathy Network, to understand the needs of these patients and identify opportunities to further support them through the work of the Action Plan.
Extract from: Full Government Response to the Infected Blood Inquiry's May 2024 Report
●UK Government · Accepted in part · 14 May 2025
NHS England has successfully established a comprehensive programme of work to prioritise reduction of clinical risk, increase support and care in the community, digitise care plans and step up prevention activities following their review of both the sickle cell and thalassaemia care pathways. The programme of work has been planned to be delivered in tandem with the 10YP with initial funding provided to support focussed work on improving care during an acute crisis. Further funding will be needed to fully implement the programme and this has not yet been identified. The ultimate aim of the work programme is to improve outcomes and quality of life for persons with thalassaemia or sickle cell disease. The UK Thalassaemia Society and Sickle Cell Society are engaged in this ongoing work programme. NHS England has an SCD Patient Advisory Group and has set up a Thalassaemia Patient Advisory Group so both stakeholders can work collaboratively with NHS England to co-produce the outputs.
Extract from: Full Government Response to the Infected Blood Inquiry's May 2024 Report
Delivery
No statement on delivery from UK Government has been found in the sources searched. This is separate from the response above.
How this page is built
The recommendation and the government responses are verbatim from primary documents. Delivery statements and other bodies' findings are shown in their own words, each with its source. The summary is written by this site and labelled as such. The Index does not paraphrase sources or characterise intent; it records what has been published.