The 2018 Welsh annual report summarise the progress and achievements against the Welsh implementation plan for rare diseases.
The key priorities/achievements for 2018/2019 identified by NHS Wales included:
- identification and improvement of the pathways for patients with unknown or delayed diagnosis
- ensure better use of patient feedback, best practice and evidence to improve pathways for primary, secondary and specialist services
- improvement in the reporting of rare diseases by information including epidemiology, significant event analysis and shared learning
As stated in the report, the same priorities are also set for 2019/2020.
The report also highlights the Rare Diseases UK Forum 2018. According to NHS Wales the event was conducted with a view to:
- provide updates to attendees of developments and case studies in rare diseases across the UK
- provide attendees with the chance to provide first hand feedback to rare disease clinicians, health service commissioners and government officials
- promote discussion on the care and treatment of rare diseases and to shape future policy
NHS Wales says:
“We have made some progress in improving the care of people with a rare disease in Wales as highlighted in this update, yet there is still more to do. All stakeholders must continue to work together to build on the progress to date and deliver improved care.”
Access the full report here.