Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that aplastic anaemia is (a) recognised and (b) included on the NHS England website; and if he will make an assessment of the potential merits of providing accessible information on this condition for (i) patients and (ii) healthcare professionals.

Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as aplastic anaemia.

There are over 7,000 rare diseases often needing highly specialised input, and so the National Health Service website is not always the most appropriate platform to disseminate such information. We receive many requests for new topics, including aplastic anaemia, and each one is assessed and prioritised according to a set of criteria. The factors considered when making these decisions include demand for the topic, how well it aligns to achieving strategic priorities, whether it will provide a cost saving for the NHS, suitability for a national audience, prevalence of the condition/symptom and whether other healthcare information providers are better placed to host the information than us, for example, charities. At this stage there are no plans to add aplastic anaemia to the NHS website.

However, we continue to add further information on rare diseases to the resources provided by the NHS Genomics Education Programme (GEP). These resources are designed for all healthcare professionals and include information on rare diseases for non-specialists through ‘bitesize’ genomics content. The GEP has a ‘just in time’ resource called ‘GeNotes’ and has developed a two-week Massive Open Online Course to support clinicians in a general approach to rare disease. NHS England has an established patient advisory group for genomics education to ensure lived experience and patient voices are an integral part of the GEP resources and to determine the direction of travel for the programme aligned to their priorities. Additionally, work continues in partnership with Medics For Rare Disease to expand the programme’s remit into non-genetic rare disease.