The Rare Disease Plan.Commissioning for Patients

Alastair KentGenetic 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

alastair@geneticalliance.org.ukwww.geneticalliance.org.uk

www.raredisease.org.uk