NHS Wales is committed to enabling conversations that lead to the best, most respectful, care for
patients and their significant others during the challenging and emotional end-of-life care process. We engaged with patients, palliative and emergency care providers, and health boards to develop a business case for a service-wide digital solution that will turn these conversations into crucial information that guides decisions and is available whenever and wherever it is needed.
The key to better preparation for palliative and end-of-life care is clear communication about a person’s views and also, if possible, their future treatment plans. When emergency decisions need to be made at speed, this background knowledge should be immediately accessible and unambiguous for the benefit of patients, their significant others, and clinicians.
When handling end-of-life care, being clear on the patients’ wishes for future care is essential. In the
event of an emergency, care decisions usually need to be made within seconds, so having that information readily available to the right people, at the right time is critical.
Health and care providers in Wales record patients’ wishes for future care either on paper or digital
forms in isolated systems, which are then distributed across care providers by email or letter. This
can carry risks, such as forms getting misplaced or lost, handwriting on forms being illegible, or
care providers being unaware of information captured by others.
Through a series of workshops and one-to-one interviews with more than 100 people representing
clinicians, patients, carers and the voluntary sector, we built a detailed understanding of the capabilities a digital system would need to offer and how it could radically improve care.
Guided by this knowledge we conducted technical reviews with Digital Health and Care Wales,
further assessed the needs of individual health and care providers and engaged with suppliers to
understand the costs and potential of existing solutions.
We developed a compelling case for a digital solution that has the potential to be transformative for the way individuals and their families receive the care they require at the end of life, provide significant benefits to patient safety and ensure appropriate care is directed from clinicians and emergency services at a national scale. It is a prime example of value-based healthcare harnessing connectivity and information sharing for the benefit of the public.
Our business case delivered:
A compelling case for change that shows how a digital solution could transform advance and future care planning for communities and individuals, who will have more opportunities to access and discuss their existing future care plans online.
A clear vision that defines how a new solution would integrate with existing digital systems across NHS Wales to create a single point of truth, ensuring anyone who expresses wishes can have those wishes respected (where feasible).
An assessment of the most relevant solutions available in the market.
An evaluation of costs and benefits that will enable NHS Wales to seek budget approval.
Consensus across the health and care providers on the need for a pan-Wales solution.
By demonstrating a clear vision, including the benefits that a digital solution can offer to health and care providers across Wales, as well as the support it can provide to patients and their loved ones during a difficult time in their lives, our business case will help to drive forward better palliative and end-of-life care for the people of Wales. It is in line with the visions and aspirations as set out in the palliative and end-of-life care delivery plans from the Welsh Government.
Prof. Mark Taubert, Consultant Palliative Medicine and Chair of Advance & Future Care Planning Strategy Group NHS Wales
I have been very impressed with all of you. Initially, as you may know, I was sceptical about getting in an external company into the deeply complex and emotive subject matter of AFCP and thought it would take very long to get everyone into the ‘zone’. But you all picked up the essentials so quickly, it left me deeply impressed!
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