The report will be officially launched in Parliament this afternoon to mark Rare Disease Day, an international event that aims to raise awareness about rare diseases and their impact on patients’ lives.
Over 300 patients and other members of the rare disease community, including family members, clinicians, patient representatives and industry, submitted evidence as part of the APPG’s inquiry into the implementation of the UK Strategy for Rare Diseases in England. If implemented, the Strategy will provide those living with rare conditions with the highest possible quality of evidence-based care and treatment, regardless of where they live in the UK.
Key finding: the UK Strategy for Rare Diseases is not being effectively implemented in England.
The departments of health in Scotland, Wales and Northern Ireland have all developed plans to improve services for rare disease patients that reflect their respective health service systems. The Department of Health in England has not coordinated an implementation plan for England.
Many patients in England do not have access to appropriate treatment or information about their condition.
Patients’ health and social care is often poorly coordinated, with many struggling to access mental health services needed to help them cope with managing their rare condition.
Key recommendation: the Department of Health should develop a comprehensive implementation plan to deliver the Strategy in England.
Ben Howlett MP, Chair of the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions said:
“The report published today shows that too many people are struggling to access the right treatment and support for their rare condition. After working with and speaking to hundreds of patients over the past few months, it is evident that health and social care services are not being coordinated effectively in England. Patients in Scotland, Wales and Northern Ireland all have implementation plans that help to improve the services patients need. It is important for patients in England to have this as well.
“The APPG is optimistic that if the Department of Health develops a plan, the situation will improve for patients in England.”
Alastair Kent OBE, Director of Genetic Alliance UK, the national charity working to improve the lives of patients and families affected by all types of genetic conditions, said:
“Since the publication of the UK Strategy for Rare Diseases there has been heartening progress for patients and families with rare diseases in a range of different areas. However, as this report shows, much remains to be done as many patients still struggle to get the services and support they need, especially in England, where the absence of a clear implementation plan has resulted in a disjointed and sometimes incoherent approach to service delivery. This affects all the bodies involved in delivering services for rare disease patients, including NHS England. The need for an implementation plan is urgent and there is a role for the Department of Health to use its influence and authority to bring this about.”