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The Rare Disease Plan. Commissioning for Patients

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.

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The Rare Disease Plan. Commissioning for Patients

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

  2. 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

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

  4. 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

  5. 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

  6. 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.

  7. 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

  8. 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

  9. Questions?Thank you for listening alastair@geneticalliance.org.uk www.geneticalliance.org.uk www.raredisease.org.uk

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