Working with communities to deliver hospice care
By Irene McKie
Chief Executive, Strathcarron Hospice, Stirlingshire
Geography shapes hospice care
"I am very privileged to lead a fantastic team at Strathcarron Hospice located in central Scotland and stretching from the edge of Glasgow, to the east side of Loch Lomond and across to Stirling and the Firth of Forth, with both rural and urban communities, deprived and affluent.
The large and diverse geography has shaped how we have adapted hospice care, and how I believe we need to deliver hospice care into the future."
Most of Strathcarron Hospice’s patients are seen in their own homes and communities – a trend which needs to accelerate across the UK. The reality of the current and future demographic changes of an ageing population with many complex conditions is that where and how people die will change radically.
This trend started well before Covid restrictions, with our growing awareness that community is where people live, belong, and contribute - where meaningful health outcomes can be best achieved. While continuing to provide in-patient care, we have pivoted our focus to supporting more people at home, reaching them earlier in their illness.
Specialist care at home earlier
Every person who is supported at home receives the same quality specialist care that is associated with being in Strathcarron – always tailored to each individual in the way that suits them best.
This support includes a multi-professional approach, widening from a Clinical Nurse Specialist/Doctor to include, as required, Allied Health Professional advice, Lymphoedema treatments, Creative Arts, Chaplaincy, Family Support and Complementary Therapy, predominantly visiting people in their own home.
This reflects what people want, provides specific advice and support to people at home, and makes a real difference quickly and seamlessly.
Many people, including health professionals, still perceive a hospice as a place where people die, for those near the end of life and as in-patient facility.
We are challenging this perception and experience and working in communities - actively finding the touchpoints with those who could benefit from hospice care; valuing people’s strengths and ability to contribute to their own health and wellbeing; making our services accessible at the right stage of someone’s illness and streamlining our internal teams to delivering the right care in the right place at the right time by the right professional.
Hospices supporting people to live with illness
We need to increase awareness of hospice care at every level of community and every stage of life and to be recognised as a hub where people can find out more about living with illness, caring for others, dying well and grieving well. For this, our website and social media channels are vital, telling the stories of staff, patients, families and communities to increase understanding of our role.
Working with former Day Care patients, we have co-created a new ‘Live your Life’ multi-professional skilled team to support people by phone, virtually, or in their own home.
Adopting a strengths-based and community-driven model and by using a person-centred ‘Good-life and Goal-Setting’ conversation, support is specific to the individual and at their pace. There is direct access for the public as well as formal referrals from professionals and we now support many more people, connecting them to a range of resources.
This has facilitated more accurate public understanding of what hospices do – but the challenge is to now reach and improve professionals’ understanding!
Communities providing bereavement support
Our bereavement service now reflects the pyramid model of bereavement – avoiding professional over-reach on highly pressurised services and acknowledging that most of bereavement care belongs in the heart of caring communities. Our Compassionate Community team have begun to hold the community element alongside the professional support delivered by the Bereavement Team.
Our Compassionate Communities work involves building communities from grass roots upwards: the model has led to a range of initiatives run by the community for the community such as Snowdrop cafes which are ideal hosted spaces where illness, loneliness and grief are embraced amongst ordinary life – and a welcoming space for many people who no longer need specialist hospice support.
We are committed to “Doing With” rather than “Doing To”. Working alongside others takes up time and includes a wide spectrum of stakeholder engagement from service users and community groups through to professionals and academics as well as our volunteers, funders, and supporters. People we work and collaborate with are active partners in developing and testing new services and improving the way we create more seamless support across the system.
"We have no single local partner or collaborator – each community is different, with different priorities and different but extensive resources to do things by themselves. We must stay in our lane and only do what only we can do. It is better to encourage existing groups to take up our agenda on community bereavement support and integrate people with long term conditions."
The changing face of hospice
Of course, all services are under significant pressure, and this is challenging. We need to make sense of resource pressures and shape our services and support to ensure they remain relevant and impactful to people with life limiting illness and their families and communities.
The perception of the hospice is changing as we increase our presence and build bridges into the ordinary and everyday lives of people in communities.
We have learned much about the assets that are in communities and how these can be connected and mobilised through the community themselves to create welcoming spaces for those who are ill, dying, caring, or grieving. These must become an extension of hospice care and services: a key role for hospices is hosting and giving 'permission' for people to become active and involved without feeling they are prying. We have learned that people helping each other are exactly that – not hospice volunteers with PVG clearance, references, and name badges.
But there is still a challenge to make volunteering attractive when it is not formal or in a hospice building with the perceived structure, status, and socialisation.
None of this is easy, but it is both fascinating and frustrating. We are still working to convince statutory bodies to trust the third sector – their rhetoric is on message but many professionals struggle to let go and trust – even when they cannot begin to find the resources to hold everything.
Beds will remain an important safety net as we develop beyond Hospice at Home into a virtual ward. The hospice building is a tangible focal point. Staff working from home during Covid taught us the value of the building as a vital gathering space for staff support, collaboration and understanding of each other's roles.
This landscape is ever changing and the pressure from all sides means we must adapt and stay relevant and pioneering.
About the author
Irene McKie is a graduate of the University of Glasgow and has an MBA from Strathclyde Business School. She has over 25 years NHS senior health service management experience and has been Strathcarron Hospice's Chief Executive for nearly 19 years.
Within the period of her leadership, the hospice has significantly developed services and income to reflect the overall increase of 74% in referrals. Service developments have included the Hospice at Home service, which has now been operating for 9 years, the launch of a new Live your Life service replacing traditional Day Care services, as well as the expansion of the Lymphoedema service to provide comprehensive support to all Lymphoedema patients in the NHS Forth Valley area.
The hospice has also created a subsidiary Home Care Social Enterprise Company to generate income to support the fundraising activities and developed its retail portfolio, activity trebling the profit over this time frame.
Recently the hospice has undertaken a Capital Programme creating a new extension, and significant refurbishment of the hospice. The hospice had also been at the forefront of Community Development to activate and empower local communities to support local people with life limiting illness.
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