Thalassaemia Society Support

UK Government

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.

Scottish Government

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.

Welsh Government

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.

Northern Ireland Executive

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.