Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent assessment his Department has made of potential levels of inequality in (a) the life expectancy and (b) NHS service provision for patients with sickle cell disease compared to other NHS patients.

Evidence suggests that life expectancy for people with sickle cell disease is improving. This is due to a number of factors including:

- Improved newborn screening coverage to enable earlier diagnosis;

- Use of the National Haemoglobinopathy Registry to monitor individuals’ health, treatment and their annual reviews;

- Access to specific diagnostics and medication, such as hydroxyurea; and

- A Commissioning for Quality and Innovation (CQUIN) incentive has been in place for the last two years to improve access to apheresis for individuals with sickle cell disease.

All these factors are reflected in the service specification quality indicators which providers are required to report against so that implementation can be monitored.

It is anticipated that NHS England’s new model for specialised haemoglobinopathy services will be in place by early 2020. The new model is designed to improve access to specialist advice and care for patients, irrespective of where they live. The equality impact assessment on the new service model indicates that it will advance the promotion of equality and support the further reduction of health inequalities. This will be through ensuring that patients with thalassemia and sickle cell conditions have equitable access to high quality specialist care and support within specialised commissioned centres irrespective of where in the country they live. These centres will promote best practice in service delivery.