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Jane MacGeorge, Director of Clinical Services at Mary Potter Hospice in New Zealand, embarked on a fact finding tour of UK hospices this summer in order to inform and support her work. Jane, pictured, centre, at St Catherine's Hospice, Crawley, with Lisa, left, a nurse and Barbara, right, an occupational therapist, received funding for the trip from the Genesis Oncology Trust, who provide grants to support New Zealand-based initiatives that will lead to improvements in the prevention, detection, diagnosis or treatment of cancer, or improvements in palliative care.
I left Wellington, New Zealand, on 18 June, a day earlier than expected to avoid what turned out to be the worst storm in 40 years. After a journey totalling 24 hours and two long flights, I arrived in London, where I would be attending the St Christopher’s “Hospice as a Hub” course and visiting other hospice services. After nearly 25 years away, it felt great to be back.
I organised the trip because I wanted to see what was happening in the UK with palliative care services now and into the future. We are at various stages of development in New Zealand compared with the UK, and this trip particularly highlighted that we are all facing similar challenges as we continue to make shifts in service development and our future palliative care approach. New Zealand faces many of the same current challenges as the UK: a growing older population, increased demand for palliative care services, a reduced workforce and a more complex palliative care population that requires improved service access and utilisation.
Heather Richardson of Help the Hospices, whom I had met earlier in the year when she presented at the Hospice NZ conference, and Melanie Hodson, Information Advisor at Help the Hospices, helped me with the itinerary. I had specifically asked to see examples of community engagement and partnership, integrated services, community service development and new ways of working with volunteers. It was a big job contacting hospices and setting up visits but the response was fantastic and everyone was very generous with their time. The hospices I would be visiting demonstrated key features against our strategic plan at Mary Potter hospice, which has an 18-bed inpatient unit and three community palliative care teams with the furthest community base 50 kilometres north of the hospice. On any one day, we have about 250 people in our service.
The majority of hospice services I visited were under review, recognising change was required to meet future demand with improved access to services for their population. A key feature was the development of new service models, particularly with community and day hospice services. There was a view that palliative care has become over-professionalised and the community had been disempowered. A common theme was the need for rationalisation and recognition that people do not need the whole service: we cannot do all for everyone and we need to use resources better, reaching more with less. These were also key messages from the speakers at St Christopher’s Hospice as a Hub course.
Volunteers were seen as critical for the future and many hospices were utilising them in a number of new and innovative ways, such as advance care planning, bereavement services and community volunteering. Day Hospice programmes were seen as a valuable service but new day hospice models were emerging with a shift from traditional social programmes to one of wellness, and the use of clinics with clear entry and exit criteria to palliative care services where volunteers play a key role. This was timely as we are seeing a reduction in attendances in our own day hospice programmes in NZ and need to look at other ways to meet people’s needs.
The focus on a public health approach and building compassionate communities that was evident in the UK requires strategic consumer engagement. I visited a number of hospices that had innovatively created space for patients, families and the public to meet within the hospice environment. As we look at reviewing our facilities, it gives us an opportunity to think about how we can engage better with the public and be more “hub-like”, to quote Heather Richardson.
I spent some time with Joanna Black at the National Council for Palliative Care (NCPC), the umbrella charity for all those involved in palliative and end of life care in England, Wales and Northern Ireland, and the lead charity of the Dying Matters coalition. I wanted to learn more about the coalition, and I was also interested in NCPC's role, including its structure and position. In New Zealand two organisations are responsible for sector leadership on palliative and end of life care. One is Hospice New Zealand, whose key role is to ensure every New Zealander has access to quality palliative care. They aim to raise awareness through national leadership by collaborating with members and the wider sector, with their main focus on education and quality. There is also the Palliative Care Council (PCC), established in 2008 by Cancer Control NZ to provide independent strategic and expert advice to the Minister of Health, and to report on NZ’s performance in providing palliative and end of life care. The PCC is also responsible for reporting on progress with the implementation of the Palliative Care strategy.
St Christopher’s Hospice as a Hub course was a good opportunity to meet people from a number of other hospices and share ideas about new facilities, day hospice changes and community development. A key message from the day is the notion that the hospice holds a central role in end of life care and the importance of being a reference point and a centre for innovation and partnership. I liked a comment by Peter Holliday, Chief Executive of St Giles and Mary Stevens Hospices, who said: "The pub used to be the hub!"
I was keen to see how the UK was shaping the “hub” concept, as New Zealand is in the early stages of developing a hub and spoke model for palliative care that aims to support access to services, particularly more rural areas that may be difficult to deliver locally. A hub and spoke approach describes one site (the hub) acting as a principle base and providing services to support satellite sites (the spokes). Arrangements can vary depending on the configuration of the organisations involved and the types of services being provided. The principle of partnership underpins this model and is based on the notion of one level of palliative care and not a hierarchy.
At the Hospice as a Hub course there was also a challenge for palliative care in “letting go” and reaching more for less by using resources differently. These messages will inform our approach as we reshape our services. Of particular interest were services utilising volunteers, such as neighbourhood volunteering. It was encouraging to see the positive outcome of initiatives like this that we can easily adopt for our communities in New Zealand. It was also interesting to view service models where hospices have made a shift to a focus on community services without hospice beds, or reengineering day hospice services and the use of communal space for the public.
As in the UK, NZ has been slow in collecting strong evidence on service utilisation and palliative care outcomes but a number of significant projects are underway to address this. This imperative to measure and understand palliative care outcomes and complexity is something we are all interested in to help inform the future. I look forward to seeing the work commissioned by the Cicely Saunders Institute measuring complexity and outcomes in relation to resource use to test different models of palliative care. In NZ, the PCC’s work programme is responsible for monitoring and evaluation of palliative care using the Managing for Outcomes framework.
Recently, a number of documents have been published in NZ to better understand future palliative care needs and service configuration and contracting. The Resource and Capability Framework for Integrated Adult Palliative Care Services provides a structured approach to the delivery of palliative care services to support more consistent access to and purchasing of palliative care across the country. It describes levels of care and staffing resources appropriate for the New Zealand context. Specifically, the report recommends a “hub and spoke” approach to configure services regionally. The National Health Needs Assessment for Palliative Care Phase 2 Report is primarily concerned with access to palliative care. This report is focused on the capacity and capability of palliative care and the wider health sector and complements the Resource and Capability Framework. The report explores palliative care services within the primary care sector, the hospice sector, hospital palliative care services, aged care sector and other health services (e.g. District Nursing, equipment and home support services). This report is considered a baseline from which to further explore and develop an understanding of palliative care service delivery in NZ. There is national and regional data that can be used for both national strategic planning, but the data can also be used to explore regional needs and planning.
My first hospice visit was with Peter Ellis and the team at Richard House Children’s Hospice. I was interested in their development of a consumer engagement plan to interact with a diverse local community. Learnings from Richard House’s model will help support our approach with developing partnerships, establishing networks and community champions, to which we are giving considerable attention to. The notion of a public health approach in palliative care is something we think is really important but are trying to understand. At Mary Potter we have invested in community engagement with our Maori Liaison, who is developing community relationships and engaging local Maori communities to improve access to services and help dispel myths of hospice. We can build on this work as we shape our community engagement plan.
I was keen to see how day hospice services were being delivered and saw similar themes across the hospices I visited: a shift from traditional social programmes to a more holistic approach around wellbeing. Like a number of hospices, we are also experiencing a reduction in day hospice attendances and need to look at how we are meeting patient need and make the best use of our resources. Also, more structure with referral to service, review and discharge.
I visited the team led by Joan Follett at Rennie Grove Hospice Care in St Albans. The work they are doing has helped inform our day programme project at Mary Potter as we review our model. I liked how the Rennie Grove Hospice Care team constantly enquired, “What are we doing for this patient?” but also evaluated the effectiveness of day hospice services.
The teams at St Catherine’s in Crawley (Gina Starnes, Director Of Nursing), St Josephs in Hackney (Roxanne Vieira- Moreno, Community Team Leader), and St Nicholas Hospice Care in Bury St Edmunds (Barbara Gale, Chief Executive) were at various stages of review with their community models. It was validating to see how they were managing processes with referral to service or first contact assessments. The tools and models these hospices shared with me will help us as we look at reconfiguring entry to service, triage and access to service, review and discharge processes. Observing these models will help guide our future community development. This of course relates well to the key messages I heard at St Christopher’s Hospice as a Hub course - that we need to use our resources as efficiently and effectively as possible.
I was also fortunate to visit Barbara Gale and her team at St Nicholas Hospice Care, after I heard her speak on neighbourhood volunteering at St Christopher’s. Volunteers have always been an important and valued workforce in New Zealand hospices but there is considerable variation in what they do. Observing these models has supported our future thinking and development with volunteers and how we engage them in new service models, particularly in the community.
I was particularly interested in partnership and integrated care models, which led me to Greenwich & Bexley Community Hospice in Abbey Wood. Chief Executive Kate Heaps, pictured, and the Greenwich Care Partnership team shared their service development, advising how to work closely with partners with a number of subcontracting arrangements to provide more seamless community services. There are numerous arrangements across NZ with District Nursing services, home-based support services and aged care facilities that rely on key relationship building. It was really valuable to hear how a hospice service was able to be the lead contractor of services and the recommendations they made regarding governance and relationship management. We have increased our shared care meetings with our local Community District Nursing team to strengthen governance after observing this model.
I understood from this visit that the UK is going through National Health Service changes that are driving the way palliative care services are commissioned and funded. Funding for palliative care services appears lower on average compared with contracted palliative care services in NZ. There are 37 hospice palliative care services throughout New Zealand that receive on average up to 60% government (statutory) funding but this does vary across the country and has decreased over time.
My brief snapshot does not fully credit the tremendous value I gained from this trip and the connections and networks I made. I would like to acknowledge and thank all those people I met and the time they generously shared with me. I hope we can return the favour one day. I arrived home to experience a swarm of earthquakes, but despite the wild weather and shaky ground there is work to get on with to future-proof our palliative care services, having viewed a smorgasbord of hospice models.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
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