Fit for the Future A review of our model of care: executive summary 2014
www.hospiscare.co.uk
Registered charity no: 297798
It is a mark of effective organisations that they guard their futures by reviewing what they do and how they do it. Hospiscare started out over 30 years ago with a vision for providing excellent palliative care to communities in Exeter, mid and east Devon ensuring that as far as possible people would be supported in their own homes to live well right up to and including at their life’s end. Nothing stands still and the context in which we operate is changing. Keeping true to our founding vision whilst bringing our model of Photo courtesy of Plymouth Fairness Commission care up to date so we can meet the challenges of tomorrow was the reason for having this review. This report explains its rationale, how we have worked and our recommendations. We conducted the review with care. We sought first to establish the context for our work over the next two decades, considering the demographic shifts that will shape demand for our services and the changing health and social care landscape within which we operate. Principally we have taken care to ask our patients, their carers, our people, volunteers and paid staff, as well as our professional partners in primary and secondary care for their preferences and views about service priorities.
‘Nothingstands still and the contextinwhich weoperateis changing.’ www.hospiscare.co.uk
01392 688000
This report takes everything we have learned and sets out what we think Hospiscare’s future should be. It identifies priorities, next steps and makes recommendations for service development. Our aim throughout has been to help people achieve their preferences for palliative and end of life care. The review’s broad messages are: we must take our expertise and services even closer to patients, possibly developing a Hospice at Home service; we must better integrate our expertise with community primary care teams and social care and strengthen the provision of respite care in community hospitals and nursing homes; we must better support carers and we must include more patients whose palliative care needs are non-cancer based. The thrust of change is not therefore so much on bricks and mortar as how we deploy our expertise, for whom, with whom and when. Hospiscare now needs to reflect on this report. There are difficult balancing issues to be addressed: defining what our core service is, what might we ask payment for, how we can enable volunteers to support carers. We have on our side fantastic advantages: our volunteers and staff, a strong profile in the community and loyal individual and corporate supporters. All those exist because our work matters; this review seeks to protect that work for the future.
Dame Suzi Leather Vice President
www.hospiscare.co.uk
01392 688000
EXECUTIVE SUMMARY Introduction Hospiscare is a charity that provides expert palliative care services to patients in all settings in Exeter, mid and east Devon. The charity has been operating for 31 years. It began in 1982 as a palliative care nursing service in the community. Exeter hospice was built in 1992 and, following a review in 2007 that identified the need for more locally accessible services; day services were established in mid and east Devon. Hospiscare’s story is described in ‘Across a Calm Sea’ written for its 30th anniversary in 2012. Inspired by the Help the Hospices Commission into the Future of Hospice Care and recognising that the demand for palliative care will rise considerably in the next 10-20 years, Hospiscare has undertaken an extensive review of its current services to consider the direction in which services will need to evolve to meet the needs of future service users.
‘Hospiscarenotonlytookcareof mymuminthelastfewweeks ofherlife,butallofusaswell. Ilikenedthecaretosomeone wrappingablanketaroundus all.Wewereneverkeptinthe dark,alwaysfullyinformed& mostimportantly,mumwas treatedwithcare,compassionand allowedtopasswithoutpain and with dignity.’ Hospiscare was extremely fortunate to be able to call on the experience of its distinguished Vice President, Dame Suzi Leather, who chaired the Review Group and made sure that their diverse skills and knowledge were fully used to develop recommendations about a future model of care for the charity.
www.hospiscare.co.uk
01392 688000
A challenging health care environment The Review Group explored a future where: • there will be greater demand for palliative care because of a growing population of frail elderly people who will often be living with more than one life-shortening medical condition as they approach the end of their lives. • there is currently unmet need for expert palliative care, particularly for patients with non-cancer life-shortening illnesses, and this is projected to increase. • Hospiscare will be operating in a more integrated health and social care environment, where there is greater clinical engagement in commissioning and more competition for the provision of services. • skills in partnership working, collaboration, education and influencing are becoming increasingly important. • there will be opportunities to enhance patient care through the application of technology and social media. The Review Group considered information about demographic and political change in Devon. This included demographic data generated specifically for Hospiscare’s area of operation by the south west office of Public Health England. The Review Group was fortunate to be able to call on advice about new healthcare structures in Devon from a GP commissioner and a Devon councillor with wide knowledge of local health and social care issues.
www.hospiscare.co.uk
01392 688000
Review findings The work undertaken during the review enabled Hospiscare to identify local people’s needs and preferences for care at the end of life and to consider how to prioritise these in a future model of care. Patients, families and carers told us they valued highly and appreciated the care and support they received from Hospiscare. Most people told us they would prefer to die at home if circumstances allowed it. The services they considered most important were: • access to expert palliative care advice when they need it, • ‘hands-on’ nursing care at home in the last few days of life, • practical help with care that helps patients to stay in their own home, • support for carers including bereavement support. Healthcare professionals and Hospiscare staff, volunteers and supporters shared these views. They would like our services to be more widely available and for palliative care standards in our locality to be enhanced by Hospiscare working in an integrated way with other providers. They think that Hospiscare should influence the quality of service provision in the community by modelling best practice and through offering education in palliative care.
www.hospiscare.co.uk
01392 688000
Specifically this will mean working collaboratively with community health and social care professionals to assist in identifying patients who have palliative care needs and helping those patients to plan for their future. It will also mean engaging with more patients earlier in their illness and supporting more people with non-cancer diagnoses or multiple life-shortening illnesses. The Review Group agreed that Hospiscare’s role as a direct provider of expert palliative care services should remain focused on delivering services to patients with complex palliative care needs through its in-patient unit, hospital team and community teams. However the Group also identified a role for Hospiscare in influencing the quality and delivery of end of life care to ensure it is responsive to the changing needs of patients, carers and families. The Group recognised that the challenge for Hospiscare in doing this was to retain its distinctive identity and ensure it remains firmly rooted in, and engaged with, the community it serves.
‘Patients,familiesandcarers toldustheyvaluedhighly andappreciatedthecareand supporttheyreceivedfrom Hospiscare .’
www.hospiscare.co.uk
01392 688000
Review Group’s vision for Hospiscare’s future model of care The Review Group concluded that Hospiscare should aim to help people achieve their preferences for high quality care at the end of their lives, in the place of their choice.
To achieve this aim the Review Group believes that Hospiscare should strive to: Make its expertise more widely available to patients with life shortening illness by being: • more inclusive by addressing the needs of patients with non-cancer diagnoses;
•
‘Iwouldlike24hour supportathome, either to provide symptomcontrolor careifnecessary,but alsotobeavailable onthetelephoneto supportmeasthe carer.’ more influential in enhancing the quality of end of life care in community settings such as care homes and domiciliary care.
Take care closer to patients by developing a hospice at home service. Foster continuity of care by: • encouraging early assessment of a patient’s palliative care needs; • providing continuing support through ‘care navigators’ including supporting patients with advance care planning; • sustaining and developing Hospiscare’s community based approach to care delivery.
www.hospiscare.co.uk
01392 688000
Support carers better; including working with others to offer day and inpatient respite and practical ‘hands-on’ help in the home. Support local decision-makers to integrate health and social care services whilst being aware of the need to maintain Hospiscare’s distinctive identity within the community. The Review Group determined that Hospiscare will need to work in partnership with local decision-makers and other providers to achieve these objectives but will, at the same time, need to protect its distinctive identity. The Review Group summarized Hospiscare’s future model of care as: • • • •
being a hub of specialist palliative care expertise being a provider of expert palliative care being a partner in the identification of palliative care needs being a partner in the delivery and co-ordination of palliative care services within the locality and for individuals • being a supporter of carers in the community • being a provider of education about palliative care for our local community, professionals, volunteers and the public • being influential in enhancing the quality of palliative care in our locality.
‘ThenameHospiscareisdauntingandevena stigma.Youneedtochangehowpeopleperceive whoyouareandwhatyoudosothattheyare willing to accept help.’ www.hospiscare.co.uk
01392 688000
The Review Group recommended that Hospiscare should: 1. Make our expertise more widely available. 2. Maintain and enhance an integrated, multi-disciplinary team approach providing expert palliative care. 3. Ensure that non-cancer patients who require palliative care have equitable access to our service, including access to early palliative care assessment. 4. Increase access to, and understanding of, palliative care by offering a more open pathway to those enquiring about hospice services including considering self-referral. 5. Take care closer to patients. 6. Explore how best to develop a hospice at home service. 7. Review the demand for in-patient beds for specialist (consultant led) palliative care and for nurse-led palliative care, including where these beds are best located and the type of facilities required e.g. single, ensuite rooms. 8. Expand and develop day services to meet a wider range of needs such as nurse-led clinics, more accessible ‘drop in’ services for users, education and support activities for carers and the bereaved and better access to information and advice. Many of these services could be offered by trained volunteers. Foster continuity of care 9. Ensure continuity of support for patients and families through multi-skilled community teams of staff and volunteers, including offering ‘care navigation’. 10. Be a partner in enhancing the co-ordination of end of life care both at a locality level and for individuals. Improve carer support 11. Enhance support for carers, including day respite care and practical help and work with others to increase the supply of high quality in-patient respite care.
www.hospiscare.co.uk
01392 688000
Work collaboratively with others 12. Further integrate with community services in GP practices, community hospitals, care homes and patients’ homes and specifically develop integration with social care providers. 13. Integrate Hospiscare’s Community Palliative Care teams with NHS/social care multidisciplinary complex care teams. 14. Work with the new NHS structures to support them in delivering their ambitions for good end of life care in Devon. 15. Develop a flexible and agile workforce that supports a partnership approach to service delivery. 16. Develop staff and volunteers with skills to support advance care planning and help people navigate the health care system. 17. Develop new roles for volunteers and the appropriate support, education and training to enable this. 18. Maintain and develop our engagement with our local community to deliver and fund hospice care. 19. Strengthen and promote our brand, including reviewing our visual identity. 20. Enhance our income generation and develop the competencies required in a more competitive funding environment. 21. Consider social enterprise models for income generation including charging for non-core services. 22. Use technology and social media to improve patient and carer experience and to educate professionals, including updating Hospiscare’s website. 23. Establish a cross-organisation working group to scan the horizon for new developments and, where appropriate, incorporate these into its IT strategy. 24. Develop and promote education in palliative care across our locality. 25. Develop skills and knowledge to strengthen our influencing capacity. 26. Develop methods for evaluating our service through research and audit to enable us to better demonstrate impact. 27. Test the proposed model of care using the ‘Preparing for the Future’ checklist devised by the Commission into the future of hospice care. 28. Review Hospiscare’s memorandum and articles of association to ensure they are congruent with the proposed model.
www.hospiscare.co.uk
01392 688000
Members of the model of care review group: Dame Suzi Leather DBE, MA DL, Hospiscare Vice President Glynis Atherton, Chief Executive, Hospiscare Dr Becky Baines, Consultant in Palliative Medicine, Hospiscare Liz Fathi, Clerk of Tiverton Almshouse Trust and Chairperson of the Melrose Group Liz Gibbons, Director of Nursing, Hospiscare Dr David Jenner, GP and Chair of the Eastern Locality, Northern, Eastern & Western (NEW) Devon Clinical Commissioning Group Dr Alison Stewart, Speciality Doctor, Hospiscare Sue Sutherland OBE, Hospiscare Trustee Gemma Wensley, Patient Representative Cllr Richard Westlake MBE, Chair of Health & Wellbeing Scrutiny Committee, Devon County Council Ruth White, Chief Executive, The Rowans Hospice, Portsmouth
Acknowledgements: Hospiscare would like to thank all those who took part in the review process. In particular we are very grateful to the patients, their families and carers who were willing to share their personal views and experiences. We are grateful to Hospiscare staff, volunteers, supporters and local healthcare professionals for contributing their views and opinions both through the online surveys and in the focus groups. We were delighted to welcome Heather Richardson, National Clinical Lead, Help the Hospices to share her presentation: ‘The future and its implications for models of hospice care’ at our first meeting in March 2013. We are grateful to the Hospiscare staff who organised the focus groups and helped to produce the report; in particular we would like to thank Dr Alison Stewart for carrying out the research and drafting the report. And thank you to Diane Shepherd, Yvonne Howard, Dawn Leaman, Sarah Taylor and Justin Densham.
A copy of the full report can be found on our website www.hospiscare.co.uk
Find out more about all the ways that you can support your local hospice by visiting our website: www. hospiscare.co.uk Hospiscare, Dryden Road Exeter EX2 5JJ Telephone 01392 688000