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The theme for this year’s Dying Matters Week is ‘what can you do… in your community?’ NHS England’s National Clinical Director for End of Life Care, Professor Bee Wee, talks about how you can get involved over the coming days and why it is so important to have challenging conversations.
During this week, up and down the country, there will be lots of events and activities hosted by local individuals, organisations and community groups, all aimed at raising awareness and encouraging conversations about death, dying and bereavement. We will host two guest blogs later this week – Jo Shill from NEW Devon Clinical Commissioning Group (CCGs) describes how personal health budgets have triggered the involvement of people to offer more personalised care within their wider community, and Bev Fitzsimons from The Point of Care Foundation tells us about the ‘living well to the very end’ programme which helps the community of staff to build their own confidence which in turn improves their own wellbeing.
The Government’s six-point commitment to choice in end of life care includes opportunity and support for people to have honest conversations and to make informed decisions about their care, treatment and support. This requires a number of things: people who feel confident in their professional carers to raise the subject; staff who feel confident in their skills to initiate and hold such conversations; language and vocabulary which enable these conversations to be clear and meaningful; understanding that such conversations are part of an ongoing process and not to be regarded as a one-off activity; appreciation that technical and relational care are both essential and tightly interlinked.
We should take heart. The National Voices’s analysis of patient survey data last year found that there has been an improvement over time in the quality of communication and explanation, especially where a course of action or treatment has been decided. But personalised care is not just about care being wrapped around the individual needs and preferences, it also means being enabled to be involved – as much as the person wishes – in considering options and making decisions. The inclination to be involved will vary from person to person, and within the same person, at different times. If we don’t ask, we won’t know.
‘I have learnt to talk about what is on my mind, where before I had nothing apart from thoughts’, ‘I talk more freely to my family and friends which eases my stress’ and ‘I don’t feel so alone with my condition’: these were comments from people who had completed a short education programme run by my colleagues in Oxfordshire, aimed at improving resilience and capacity to self-care in the face of progressive life-limiting illness. It shows that opportunity, support and encouragement to discuss these matters can restore the confidence to speak out and thus diminish the personal isolation that often comes with the diagnosis and treatment of serious illnesses.
The Ambitions for Palliative and End of Life Care identifies ‘each community is prepared to help’ as one of its six ambitions. Dying Matters week provides an opportunity for every community to focus on what it is doing to support people who are facing the end of their lives, their families and people important to them, and those who are suffering bereavement and loss in their midst. At such times, those who are isolated, physically or emotionally, are particularly vulnerable.
There are many resources that exist to help individuals, organisations and communities to raise awareness and start conversations. Take a look in the resources section on the Ambitions’ website and its links to other websites and resources, have a look at Jo Wither’s TEDx talk, ‘We need to talk about dying’, and visit Health Education England’s e-learning for healthcare programme to find the library of sessions for end of life care.
So, what can you do – in your community? Look out for the events and activities in your area, and get involved. Use this week as a trigger to get you started but stay involved beyond this week. Help to ‘normalise’ conversations that include references to death, dying and bereavement – this will make it so much easier for people to raise this subject, as and when they wish or need to, and take away the fear of doing so.