The Commission into the future of hospice care 2012 RE VISITED FEBRUARY 2018 The Commission into the future of hospice care 2012

History of the Commission 2010 – “Dying for Change” published proposing a radical change to the way that end of life care is delivered in the UK Some important opportunities for hospices Some major challenges envisaged in the future too

Aims of the Commission Highlight the high quality of hospice care and urge its universal extension Provide hospices with a framework for more strategic and practical leadership within the delivery of care Help hospices meet the challenges of anticipated changes in demography and disease, as well as health and social care services Help hospices adapt and innovate so they can provide the very best care and support in order to meet public need and expectation Help hospices navigate an uncertain future of proposed changes in policy and practice

Its guiding parameters Three questions identified around which all work will be focused: 1. What is distinctive, characteristic, visionary and special about hospice care and its contribution to EOLC? 2. What must hospice care providers attend to in the increasingly complex external world in which they operate? 3. What do hospices need to do to adapt and change to prepare for the future?

Its key workstreams The unique offering of hospice care The need for palliative care in the future and how hospices can help meet these needs The hospice workforce required to address these needs Funding opportunities New partnerships New approaches to care The future of education and research by hospices

Possible scenarios for the future (Ref Skills for Health) Hospices as niche providers of specialist palliative care and specific interventions Business of health Less is more Hospice as hubs; providing coordination, information, navigation around EOLC Public health model of end of life care; care focused on wellbeing All by myself What comes out? Stories that describe how ‘the world’ might look in the future (not predictions) Usually three perhaps four ‘versions’ of the future Based on an analysis of drivers of change that are derived from the group Be engaging, compelling and credible Allow critical uncertainties and predetermined elements to be separated

Business of health Constrained public spending drives big business opportunities Production line approach with segmentation into narrow specialisms and skillsets Focus on cost effectiveness and outcomes Price sensitive International competition/specialisation Euthanasia more available

All by myself Funding focus on wellness & prevention Personal responsibility for care and some self funding More and longer independent living Robots replace carers Wellness monitors enable individual self monitoring Chosen treatments at home, on a cruise etc, not necessarily in a traditional setting

Less is more Personalisation Self directed care budgets, but limited funds so keep it simple Information access means customer is king Multi provider, customised packages Drugs tailored to individual genetic profiles Telehealth and health enable remote, cheap monitoring

Key opportunities for hospices Maintain a leadership and advocacy role in EOLC – listening to users, exerting influence, challenging rhetoric Extend care to more people and continue to serve as key players in EOLC Support public involvement in EOLC – ACP, participatory models of care, community engagement Lead innovation around new models of end of life care

Challenges in achieving this Our limited evidence base The absence of a coherent story about hospice care and what is achieves; who is in and who is out, shared semantics, aspirations and outcomes Our desire for independence at organisational and sector levels A cautious approach to partnerships on the part of many Concerns about the cost of integration

Five Steps – from 2012 ……. Prepare for significant change in context of palliative and EoLC Strengthen understanding of the contribution of hospice care Establish hospice care as a solution to future challenges in palliative and EoLC Strengthen connection between hospices their local health and social care systems and their local communities Strengthen the leadership of hospice care

Review of the impact of the Commission When and how? Decided by Hospice UK Board in autumn 2015 - two years on from Commission’s final report Dr Heather Richardson engaged on a consultancy basis Review conducted Jan - Mar 2016 Advisory Council discussed draft report, April 2016 Findings presented to Hospice UK Board, 12 May 2016 Findings being shared with members via Roadshows and linked to Strategic Review discussions Will also share findings more widely via website, other meetings

Review of the impact of the Commission When and how? Online survey of all Hospice UK members 10 interviews with survey respondents Seven interviews with other sector leaders and stakeholders Review of documents providing evidence of activity on the part of hospices as a result of the Commission Review of Commission publication downloads from Hospice UK website

Review of the impact of the Commission What the review assessed Assessed achievement against five domains: Reach: number of member hospices who were aware of Commission Adoption: proportion of hospices who drew on the Commission outputs to inform their work and thinking Implementation: extent to which hospices have done things differently in response to Commission Maintenance: extent to which hospices and hospice sector have sustained interest in Commission’s learning Satisfaction: extent to which hospices were pleased with the Commission’s work

What did the review find? Domain Assessment of success Reach High 93% of survey respondents were aware of Commission At least 76% of member hospices were aware of Commission (engaged in Commission and/or confirmed this via survey) Adoption 89% of respondents who knew of Commission had referred to its publications c. 28,000+ downloads of Commission publications Implementation Medium-High 86% of respondents who knew of Commission had used its outputs and intelligence to guide plans/development; mainly strategic direction Maintenance Medium-Poor Many hospices had ‘forgotten’ the Commission recommendations, despite finding them useful and interesting when published Satisfaction 14% of respondents had experienced some kind of disappointment re. the Commission – reasons varied. Many respondents expressed positive feedback and thanks.

Five Steps – from 2012 ……. Prepare for significant change in context of palliative and EoLC Strengthen understanding of the contribution of hospice care Establish hospice care as a solution to future challenges in palliative and EoLC Strengthen connection between hospices their local health and social care systems and their local communities Strengthen the leadership of hospice care