The Rare Disease Plan. Commissioning for Patients Alastair Kent Genetic Alliance UK

Looking Back A lottery Variation between different parts of the country Variation between diseases What can we get away with, not what is needed Reactive Fragmented

Patient and Family Expectations Clarity Equity – geographical and between diseases Robustness Transparency A say in the process Integrated provision Respect

The NHSCB An opportunity Development of a single national standard of service (delivered appropriately) Patient and family input Standards Integration – between clinicians and between central and local elements of care provision Systematic innovation

The Challenge Absence of consensus about care pathways Pace of change Securing meaningful patient input Integrating central and local provision Monitoring and evaluation – making contract compliance and patient expectations match up

Patient Inputs Genetic Alliance UK “Family Route Maps” and Citizens Jury as examples of real patient led development Membership of CRGs Contribution to development of SSCIF Leadership role in developing proposals for a National Plan for Rare Diseases Etc.

Challenges Financial pressures – leveling down not up Institutional separation Resistance to change (and conversely, technological imperativism) Skill shortages (clinical and commissioning) Sustaining trust across stakeholder groups

Looking Ahead Go for the low hanging fruit first (eg adding clinical expertise to UKGTN outputs) Build in sunset clauses to allow systematic review and evaluation Beware the MoD model – forward facing investment Do not neglect CME/CPD

Questions? Thank you for listening