Empowering patients to make difficult choices

NHS England’s National Clinical Director for End of Life Care introduces an important new nationwide roadshow kicking off in Birmingham:                                                                                       

Immediately after the NHS Expo this year, I published a blog entitled ‘Being ambitious for palliative and end of life care: who’s responsible?

The answer is, of course, we all are.

Life inevitably ends with death. For some, this comes suddenly and there is no time for preparation, so the focus of care is care and bereavement support for those they have left behind so abruptly. But for many others, there is some time to prepare: to be warned that life expectancy is limited to the foreseeable future, to have opportunity for conversations that are meaningful and important to them, to make decisions about their own care and treatment and to make known their views, attitudes and priorities which can be used to guide decision making if there comes a time when they cannot actively participate in such discussions.

Of the half a million adult deaths a year, approximately three quarters may be anticipated, so there is potential to help over 350,000 people in this way.

Why is this important? Because it is a tough, lonely, uncertain, confusing time for people, and anything we can do to help will make a difference, even if it doesn’t eliminate the underlying problem. Because each of us, and those we love, will face this at some point in our lives, if we haven’t already, and we would want to be able to receive skilled, effective care, and honest and reliable communication, by those with the right level of expertise when we need it.

Commissioners and providers of health and social care services have a duty of care to create and maintain the conditions that make this happen. The Ambitions for Palliative and End of Life Care sets out the national framework for local action.

Palliative and end of life care is not something that can be delivered by statutory services alone. It is only effective when there is real partnership working between the patient, those who are important to them, and staff involved in their care. It crosses health and social care boundaries, so ‘integrated care’ is an essential byword. And it involves the wider community around them. Often care and support is provided by third sector and voluntary organisations.

In July this year, the Government published its response to the review of choice in end of life care. This includes a six point commitment to the person who is approaching the end of their lives. That is, they will be given opportunity and support to: have honest conversations; make informed choices about their care; develop and document a personalised care plan; share that plan with their care professionals; involve, to the extent they wish, their families, carers and those important to them; know who to contact if they need help and advice at any time.

Much of this can only happen through the day-to-day interaction of care staff with the person and their families; for example, the honest conversations and support to make informed choices. But some of this requires system support to bring to fruition – the ability to share the person’s personalised care plan in real time across organisational boundaries.

This week, I will be joining colleagues in the West Midlands region and our Personalisation and Choice Team from NHS England at the Palliative and End of Life Care Roadshow in Birmingham.

This will be the first of a series of roadshows across the country between now and March next year.

You will be able to hear, not only about the national priorities for palliative and end of life care and how personalisation and choice can be promoted, but, more importantly, about some of the interesting and important improvement initiatives that are going on in your region, including paediatric palliative care.

We will be launching a patient empowerment film which has been developed in close collaboration with colleagues in the West Midlands Clinical Network and Senate.

There will be opportunity for networking and informal dialogue with colleagues, including your local palliative and end of life care leadership team: Sarah Mitchell, Joanne Bowen and Laura Tooley, all of whom have made impressive contributions to national as well as local initiatives in palliative and end of life care.

will be an occasion for learning from each other, celebrating successes and building shared impetus going forward. I look forward to meeting as many of you as possible there.

Professor Bee Wee

Professor Bee Wee CBE, National Clinical Director for End of Life Care, NHS England and NHS Improvement.

Bee is a Consultant in Palliative Medicine at Sobell House and Katharine House Hospice, Oxford University Hospitals NHS Foundation Trust and Associate Professor at University of Oxford, where she is also a Fellow of Harris Manchester College.

Originally from Malaysia, Bee qualified from Trinity College Dublin in 1988, trained in general practice in Dublin, then moved into palliative medicine in Ireland, Hong Kong and the UK. She was Consultant/Senior Lecturer at Countess Mountbatten House, Southampton (1995-2003), where she became Deputy Director of Education, School of Medicine at the University. She was President of the Association for Palliative Medicine of Great Britain and Ireland (2010-13), National Clinical Lead for e-ELCA, a DH-commissioned e-learning programme for end of life care, now hosted by Health Education England, and Chair of the Topic Expert Group for the NICE Quality Standard for End of Life Care (2011). She enjoys cooking and allotment gardening for relaxation.

Bee is Honorary Professor at Sichuan University, China, and holds an Honorary Doctorate of Science at Oxford Brookes University. As NCD, she led the Leadership Alliance for the Care of Dying People and is co-chair of the National Partnership for Palliative and End of Life Care which was responsible for publishing the ‘Ambitions for Palliative and End of Life Care: a national framework for local action’ in 2015. She was awarded a CBE in the Queen’s New Year’s Honours list in 2020 for services to palliative and end of life care.

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  1. Tony Bonser says:

    Brilliant and much needed. Must have greatest possible exposure. Thanks Bee

  2. Robin Bastin says:

    A wonderful, much needed initiative. Please make sure to allow as many patients and members of the public to get involved. Best wishes.

  3. Robin Bastin says:

    Thank you Bee Wee for this much needed initiative.

  4. Jamie Yeomans says:

    Can you please tell me where the Birmingham roadshow is happening.
    I am a Palliative Care Nurse working in Birmingham and am also a Specialist Advisor in EOL care for the CQC and would like to attend/contribute.
    Please advise