Reflections: The #Big Conversation

Categories: Community Engagement.

I have been reflecting on how this big week fits into Cicely Saunders’ original vision, where expert pain and symptom control, compassionate care, teaching and research were the four pillars of hospice and palliative care.

I wanted to share what caught my eye to provoke me to think about this.

Actually, we have to begin before this big week with the 2016 campaign from the General Medical Council about end of life care – check out the GMC website for a whole range of resources.

Then the latest National Survey of Bereaved People (VOICES), published by the Office of National Statistics in March, reported on bereaved people’s views on the quality of care provided to a friend or relative in the last three months of life.

The Royal College of Physicians’ audit of care of the dying in hospitals raised concerns in the national media about DNACPR – Dr Mark Taubert (@DrMarkTaubert) wrote about his thoughts on this for The Huffington Post, as did consultant hepatologist Phil Berry (@philaberry) on his own blog Illusions of Autonomy.

Concerns over the future of the hospice and palliative care workforce have been raised by The National Council for Palliative Care, while the recent Care Quality Commission’s ‘A different ending’ review provoked discussion about end of life care across different settings and groups.

However, this Dying Matters Awareness Week has seen many examples of people caring about other’s experiences of end of life.

For example, @BrumYODO ran a range of activities throughout the week showing care and compassion. It is worth watching the recording they made of philosopher Nigel Warburton (@philosophybites) and Dr Ros Taylor (@hospicedoctor) in conversation, talking about choice, spirituality and palliative care.

The International Observatory on End of Life Care (@IOELC) supported a whole range of conversations and choice activities, and there were a number of tweet chats during the week, hosted by Dying Matters (@DyingMatters), @WeEOLC and others.

The Digital Legacy Association (@DigitalLegacyCo) prompted us to think about our digital legacies, the Cochrane Pain, Palliative and Supportive Care Review Group (@CochranePaPaS) published a series of evidenced based blog shots and blogs about research in palliative care, and Hospice UK (@HospiceUK) held its first research active hospices stakeholder meetings.

There were also many powerful and poignant blogs and opinions pieces from patients, families and clinicians on social media and in the national press.

So what does this tell us about Cicely Saunders original vision? It tells us that it is still present and relevant. It tells us that people do care. It tells us that we still haven’t got it right.

So when the flurry of this week’s activity dies down, let’s not lose the momentum. Let’s not be disheartened. Let’s make it ‘big’ by talking, working and thinking together to make it better and right.

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