The pair have worked closely together over the last few years to develop a model of respite care that provides an ’MOT’ for patients as well as time off from caring for family members – in order to maintain individuals’ level of function or to improve it. Rebecca also leads a range of services focused on rehabilitation, including services provided by volunteers.
This master class was an opportunity for them to reflect on their individual and joint learning and to consider its implications for other hospices. It brought together a broad and rich mix of individuals from hospices across the UK including therapists and clinical service managers interested to explore these issues for implementation in their settings.
A focus on enablement
Central to the delivery of respite care and rehabilitation is a commitment to enable people to live and function well within their capabilities. Importantly, their implementation represents a change in the focus of care from ’looking after’ people to ’enabling’ them. The master class considered the challenges and opportunities of such a culture shift, alongside the strategic opportunities provided by both initiatives to address future challenges around responding to increasing numbers of people (older and younger) who need long term care to manage chronic life shortening conditions.
Reframing rehabilitation in the context of hospice and respite care
Rebecca proposed that the concept of rehabilitation be reframed to help increase interest and investment in an approach which hasn’t always been thought central to palliative care and to counter concerns of its offering false hope to patients. She confirmed that rehabilitation is entirely consistent with the values of hospice care and represents an active support system to enable patients and families to optimise independence, self manage their condition, anticipate and adapt constructively to losses encountered along the journey of advancing illness. As such it’s a key component of respite care which, as realised by Di’s nurse-led unit, places an emphasis on maximising patient potential and promoting independence, self care and control. This contrasts with earlier scenarios in which patients may have lost ground when admitted for respite.
Reaching new beneficiaries and meeting new needs
The respite unit, whose development has spanned the last 4 years and which now consists of eight beds, has proved to be of significant value to carers as well as patients, to the increasing number of people who live alone (1/3 of the local population admitted for respite) and those with long-term, non-cancer conditions who may be less well linked to health care institutions.
At St Joseph’s, its emphasis on working with patients who are relatively well and whose conditions are quite stable has had the additional benefit of fostering more opportunities to discuss advance care plans. Its work with young adults has been a particular success, established in partnership with Richard House Children’s Hospice, and augmented with drop-in sessions, Saturday clubs and summer clubs.
Getting going and sustaining change
Both facilitators stressed the value of input and active support from senior management and from a genuinely multi-disciplinary team. Ongoing audit and evaluation has been crucial and, in the case of the respite unit, clear referral criteria and clarification as to what the respite ward can and can’t provide.
Resourcing this initiative
Participants were especially interested in staffing levels, their cost and implications for workforce development.
In what may be unusual for some hospices, Rebecca has strategic oversight of a large multi professional team of allied health professionals. Patients can dip into rolling self-management and support programmes which address functional mobility, breathlessness, fatigue, falls prevention and nutrition wellbeing.
These are partially delivered by volunteers in the Empowered Living Team who provide second-tier support to paid staff in the form of a unique outreach programme, working with patients on rehabilitation programmes in the community setting. Overall, this approach means that St Joseph’s is now able to offer more of a career structure for therapists/allied health professionals and a very successful volunteer programme. The latter typically attracts students on healthcare courses who are looking for relevant work experience along with a diverse mix of people from the hospice’s local communities.
Di observed that the intention had always been for nurses and healthcare assistants to move between the respite and other wards in the hospice. With this in mind she secured external funding for study days to help instill the vision and philosophy for nurse-led respite. In practice, it had proved challenging for some staff to move between the two with the result that a dedicated team has now been recruited.
Related resources
Drawing on a mix of theory and practice, the master class included an exchange of practical tools for assessing, planning, and communicating individuals’ needs across the care team, with references to research and policy documents to help build the business case for investing in this work. Plans are underway at Help the Hospices to produce a publication about the place of rehabilitation in hospice care, in response to the Commission into the Future of Hospice Care. This will be available in late 2014.
You can download presentations and other resources from the master class from the Help the Hospices website.
About the master class series from Help the Hospices
This new series showcases practice and offers contemporary perspectives on challenges which many hospices are facing. They enable small groups of peers to work with expert practitioners to share experiences and refine their ideas and help to develop informal networks so that learning continues after each event.
Coming soon …
The next master classes are:
- ‘Harnessing social media to enhance hospice care and support‘ – 10 July, The Hospice of St Francis, Berkhamsted.
- ‘Embedding vision and changing culture’ – 4 September, St Wilfrid’s Hospice, Eastbourne
- To suggest topic for future master classes, contact Jean Hindmarch at Help the Hospices.
Leave a Reply