Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to to help support the families of patients with aplastic anaemia; why aplastic anaemia does not have a page detailing its symptoms on the NHS website; and if he will have discussions with NHS England on the potential merits of adding such a page to its website.

The Government is committed to improving the lives of those living with rare diseases, such as aplastic anaemia. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community. These include: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs.  We remain committed to delivering under the framework and will publish an annual England action plan in 2025.

There are over 7,000 rare diseases often needing highly specialised input, and so the National Health Service’s website is not always the most appropriate platform to disseminate such information. At this stage there are no plans to add aplastic anaemia to the NHS website, but we will re-review the position in the future, should things change.

The majority of the treatment pathway for aplastic anaemia is an integrated care board commissioning responsibility. Hematopoietic stem cell transplant (HSCT) is an NHS England specialised commissioned service that covers aplastic anaemia, and NHS England has published two national service specifications, one for adults and one for children. The HSCT specifications set out the standards that providers of the service must meet, which includes access to a range of multidisciplinary staff, including psychological support and nurse specialists trained in communication and counselling. Specifically for children, there should be access to appropriately trained paediatric dieticians, physiotherapists, occupational therapists, speech and language therapists, psychologists, social workers, and Child and Adolescent Mental Health Services, within nationally defined access standards.