Quality statement 7: Access to treatment
Quality statement
People with a rare disease have equitable access to treatments when recommended by each nation's health and care guidance body.
Rationale
Access to new treatments is subject to nation-specific commissioning criteria, and routing and funding mechanisms. For rare diseases, access can also be restricted because of a lack of awareness among healthcare professionals and where a person lives. People unable to access specialist centres are more likely to miss out on treatment. Monitoring uptake of treatments will ensure that people with a rare disease have equitable access to treatment.
Quality measures
The following measures may be useful to support assurance and improvement. They are examples of how the statement could be measured but may require adaption depending on local, regional and national commissioning arrangements.
Process
Uptake of recommended treatments for rare diseases.
Data sources: NHS Business Services Authority's data on NICE technology appraisals in the NHS in England (Innovation Scorecard). Data on the prescribing of NICE-approved medicines is also available on systems such as 'blueteq'.
What the quality statement means for different audiences
Service providers (primary, secondary and tertiary care) monitor and raise awareness of recommended treatments for rare diseases and compare practice with other similar providers.
Healthcare professionals (such as doctors) ensure that they are aware of the recommended treatments for people with a rare disease and have mechanisms for monitoring any emerging treatments that may be an option.
Commissioners monitor the provision of treatments for rare diseases and compare practice between similar providers.
People with a rare disease are informed about and able to access recommended treatment that is appropriate for their condition.
Source guidance
Definitions of terms used in this quality statement
Equitable access
People can access care, treatment and support when they need to and in a way that works for them, which promotes equality, removes barriers or delays and protects their rights. [Care Quality Commission's Assessment Framework (2024)]
Equality and diversity considerations
People should be supported to overcome potential difficulties in accessing treatment, which may result from the person having to travel a long way to attend appointments, or from them having a disability, cognitive difficulties, or financial barriers.