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Transplant Survivorship: Anthony Nolan’s Roadmap for Recovery Campaign

Transplant Survivorship: Anthony Nolan’s Roadmap for Recovery Campaign. Katie Begg, Head of Policy and Public Affairs, Anthony Nolan. Background. Several factors influenced our decision to conduct research on long-term follow up care for transplant patients:

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Transplant Survivorship: Anthony Nolan’s Roadmap for Recovery Campaign

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  1. Transplant Survivorship: Anthony Nolan’s Roadmap for Recovery Campaign Katie Begg, Head of Policy and Public Affairs, Anthony Nolan

  2. Background • Several factors influenced our decision to conduct research on long-term follow up care for transplant patients: • NHS England service specifications • Late effects clinics aspired to • Change to national commissioning presents opportunity to eliminate variation • Conversations with clinicians around current variation in practice • Patient reports of difficulty accessing particular elements of care – psychological support, fertility treatment

  3. Research • Commissioned 2020health • Under their ‘forgotten conditions’ stream of work • Established a steering group • Desk research, group roundtable and 15 interviews with stakeholders – clinicians, patients, relevant bodies (e.g. BSBMT) and commissioners • Report makes 13 recommendations around: • Commissioning policies • Hub and spoke models of shared care • Data collection • Research and collection • Patient at the centre

  4. A Roadmap for Recovery: Key findings • The provision of NHS services to help post-transplant patients with their long-term effects is “patchy” across the country. • There is quite a range of different approaches taken in the delivery of late effects services. While standards establish minimum standards for care and treatment, they do not focus sufficiently on long term follow up and late effects. • Given that commissioning responsibilities move to CCGs for post-transplant care, those interviewed within the transplant community expressed uncertainty as to how provision will be made for post-100 day commissioning of services for post-transplant patients. • Patients interviewed commented on the sense of insecurity they experienced when aspects of their care were not properly transferred when they moved between primary, secondary and tertiary care settings.

  5. A Roadmap for Recovery: Principle Recommendations

  6. A Roadmap for Recovery: Supporting Recommendations

  7. A Roadmap for Recovery: Supporting Recommendations

  8. The campaign so far… Fringe events at Party Conferences Parliamentary Launch in September 2013 Supporter engagement Web and social media activity Clinical Reference Group engagement Anthony Nolan Nurses

  9. Next steps • A3 Change Proposal to NHS England • Research on rate of return to work amongst transplant patients • Potential research on economic implications of changing the commissioning model • Continued campaigning on the issue

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