Caring for dying people closer to home: how can we meet the challenge?

Palliative care must become a shared priority argues Catrin Mair Edwards

Across Wales, around 90 per cent of all hospice care is delivered in the community or in a person’s home or care home. This accounts for more than 11,400 adults and 800 children in Wales. With the vast majority of us – around 70 per cent – expressing a preference to be cared for at home and, as appropriate, to also die at home, this is good news.


However, despite this positive figure, which shows that people accessing specialist palliative care largely get the care of their choice, we need to recognise that a significant proportion of people with palliative care needs may be missing out on getting the right care at the right time, or missing out on palliative and end of life care altogether. As many as one in four people with a palliative care need – around 6,000 people in Wales – are estimated to have that need unmet. We also know that, despite the general preference to be cared for at home, more than half of us will die in hospital, often without a clinical need to be there.


Our population will age over the next 20 years – with more than 40 per cent of the population aged 65 or over by 2038. Need for hospice and palliative care services will grow significantly across this period. Indeed, in the next 10 years alone, the population over 65 year will grow by 18 per cent, and by 36 per cent over 20 years. Meeting the needs of this demographic change, and doing this well, means support to people outside traditional inpatient settings, either hospice or hospital beds. This is both in line with the majority of people’s preferences and also complements the Welsh Government’s aim, as outlined in ‘A Healthier Wales’, to deliver a sustainable health and care sector by bringing care out of the hospital and closer to home.


Delivering sustainable hospice care that can reach more people, and continue to do so out in the community, cannot be done in isolation. Firstly, hospice care, like the NHS, is free to access but must fundraise £28m each year to effectively top-up the statutory funding it receives to sustain its services. This means that hospices in Wales are reliant on the communities they serve.


Increasingly, hospice care takes a community development approach to meeting greater need and to reach more people with limited resource. Nightingale House Hospice in Wrexham, for example, has utilised a Compassionate Communities approach in the Corwen area, where existing supportive networks at a village level are supported to develop models of befriending services to meet the particular needs of dying people in their areas. Compassionate Communities aim to support dying and bereaved people within their community by drawing on the community’s resources to wrap around the care provided by professional health and social care workers. With the Welsh Government expressing its ambition, during the seventieth anniversary celebrations of the NHS, to become the first Compassionate Country, hospice care providers have a key role in seeing this grass-roots approach scaled up at a regional and national level.


As well as mobilising communities to meet need, hospice care provision is a key part of the wider health and care community. If people are to be cared for closer to home and to avoid acute admissions to hospital, they need a seamless service between specialist palliative care, primary care and domiciliary care services. Hospices can be agile in their approach to partnership working. New service models, such as that delivered by Hospice of the Valleys in Blaenau Gwent, where a designated hospice Clinical Nurse Specialist is responsible for care home residents and is tasked with upskilling the local care workforce to support more people to receive appropriate palliative care in their place of residence, is not only beneficial for the people who receive joined-up care, but increases the sustainability of all organisations involved. Where a new service model evaluates positively, it should be recognised for support by Regional Partnership Boards and, where appropriate, best practice should be adopted nationally.


Lastly, the Welsh Government must recognise that delivering more and better palliative care is central to meeting the challenge of supporting our ageing population with dignity. Greater focus on palliative care at a strategic level would mean statutory population needs assessment and the resultant plans, including those under the Wellbeing of Future Generations Act and Social Services and Wellbeing Act, identify hospice and palliative care as areas for focus and delivery. With health board and trust Integrated Medium Term Plans expected early in 2019, we must see health boards involve hospices and palliative care services as genuine partners in delivery if we are to realise this vision.


Caring for dying people closer to home is not an insurmountable challenge if we act now. Hospices in Wales are already supporting thousands of people in the community; with a stronger commitment at national and regional level to strategic planning, greater partnership working and mobilised communities, this can, and should, be a reality for more people into the future.


Hospice Care in Wales 2018, which quantifies the care services delivered by charitable hospices in Wales, is published 6 December 2018 by Hospice UK. The report is informed by the 14 adult hospices and 2 children’s hospices serving Wales.


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Dr Catrin Mair Edwards is Policy & Advocacy Manager (Wales) for Hospice UK

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