To date, people living with rare conditions have too often been forgotten when it comes to policy or investment in health services. NHS services remain too focused on common conditions, with an increasing focus on high volume, low complexity conditions.
To address this RAIRDA has developed a roadmap for improving care and treatment for RAIRDS. It covers six important areas, where policy and system changes could transform the care and treatment of people living with RAIRDs across the UK.
RAIRDA is calling for government, the NHS, and other relevant bodies to take action in the following areas:
- Protection against the ongoing threat of COVID-19 and other viruses.
- Quicker and more effective processes for diagnosis.
- Better access to treatments – including new and innovative drugs across the UK.
- Better co-ordination of care.
- Improving access to specialist care and knowledge within the workforce.
- Reducing inequalities in access to high quality care and treatment.
As we begin to emerge from the pandemic it feels like a pivotal moment to refocus on improving care and addressing inequalities in provision for people with rare autoimmune rheumatic conditions. RAIRDA and its member charities are committed to playing our role in driving these priorities forward.Sue Farrington, Co-Chair, RAIRDA
Protection against the ongoing threat of COVID-19 and other viruses
Priority access to vaccines and treatments: Eligible people with RAIRDs should continue to have priority access to vaccines and treatments, which includes having their eligibility consistently recorded across primary and secondary care records.
Improved communication: Governments in each nation need to ensure there are improved communications to people with RAIRDs, and professionals who they engage with, to ensure people are aware of their right to access vaccines and treatments.
Quicker and more effective processes for diagnosis
Quicker diagnosis: A need for more measurable and realistic targets for referral, and initiation of treatment.
More effective diagnosis: This could be achieved by better training alongside the development of new technological tools for GPs and other primary healthcare professionals.
Research into the diagnostic journey: There remain uncertainties about the diagnostic journey that are currently barriers to improving diagnosis. There is a need for further research into this area to inform future policy and action.
Better access to treatments – including new and innovative drugs across the UK
A joined-up approach to increasing treatment availability: The Rare Disease Framework, as part of its vision to ‘improving access to specialist care, treatments and drugs’ should facilitate discussion between the constituent bodies in each nation as to how to improve access to drugs for rare diseases – including new treatments, but also re-purposing old ones.
Better co-ordination of care
Access to multi-disciplinary clinics: Given the complex needs of people with RAIRDs, and often the need for treatment by multiple specialities, there needs to be increased availability of multi-disciplinary clinics to address the complex needs of these patient groups.
Improving access to specialist care and knowledge within the workforce
The development of specialist networks: The national Rare Disease Framework Action Plans being developed for Scotland, England, Northern Ireland, and Wales should describe how health services will invest in, and support, specialised networks for rare diseases, including specialised rheumatology networks.
Upskilling health professionals: Health services should upskill, and develop enhanced roles for, nurses and allied health professionals involved in caring for people with RAIRDs. This should include better training in caring for people with RAIRDS within rheumatology teams.
Reducing inequalities in access to high quality care and treatment
Development of a Quality Standard for RAIRDs: A NICE Quality standard for RAIRDs, or one that that includes RAIRDs, should be developed, including standards on the core components of care set out in this report, such as diagnosis and co-ordination of care.
Regular audit of services: the NHS, in partnership with relevant professional and patient organisations, should plan to regularly audit services for RAIRDs in line with these proposed quality standards, to highlight inequalities and areas of the service where there is a need for improvement.