Renewing our ambitions for palliative and end of life care
This week marks a significant moment for palliative and end of life care in England. The Ambitions for Palliative and End of Life Care: A national framework for local action, first published in 2015, has been refreshed and relaunched today.
The Ambitions Framework is distinctive for three key reasons.
First, it articulates six key ambitions that describe what good looks like in palliative and end of life care for people of all ages, including their carers and others who are bereaved.
Second, it was co-produced by a partnership of 27 national organisations, all striving towards the same goal and coming from a range of perspectives, including health and social care bodies across the statutory and voluntary sectors.
Third, following its publication, the partnership behind the Framework has remained strong and grown further, providing a catalyst for collective action at different levels.
In 2019 a review of the Framework was undertaken in preparation for the refresh. A survey of national and local organisations was cascaded through each of our partner organisations and their respective members. 125 surveys were completed in October 2019, of which 111 were from local organisations and 14 were from national organisations.
Overall respondents valued the Framework and made a number of recommendations on how to refine it, but specifically asked for it not to be significantly changed so that they could continue building on what they had already started.
This past year has shown us more than ever how crucial it is that the delivery of palliative and end of life care must be universal and personalised. That means conversations that focus on what matters to the person, conversations that encompass those who are dear to them, and conversations for which professionals who initiate these, feel prepared, confident and competent.
It has also demonstrated both the resilience and the fragility of the bonds between different providers and practitioners, across health and social care – where these have been strong and flexible, much more can be achieved than previously imagined; where these have been fragile and gap-ridden, it can result in poor experience and distress for all concerned.
It is important to recognise that wherever ‘the person’ is referred to in the Ambitions Framework, this relates both to the person who has the advanced life limiting illness as well as their carers, families and those important to them. It is important to remind ourselves that we must put the person at the centre of all we do, and the Ambitions Framework is an enabler in delivering on the NHS Long Term Plan, in which there is a specific commitment to provide more personalised palliative and end of life care.
We know the original Ambitions Framework was well-received and used very effectively in some areas, but there is still more work to be done to spread the reach of the Framework and ensure it becomes custom and practice in all aspects of palliative and end of life care, in all sectors and settings. This will require organisations to cascade and share the revised document and take ownership of its implementation at a local level to ensure high quality personalised care for all. We need to learn from the challenges and opportunities which have arisen to improve palliative and end of life care throughout the pandemic and ensure the positive innovations and solutions are sustained and continuous improvement takes place.
As we move towards a place-based and systems-based health care system, there is opportunity to help Integrated Care Systems consider how the access to, and quality of, palliative and end of life care can be improved for their whole population. Mahatma Gandhi said: ‘The true measure of any society can be found in how it treats its most vulnerable members’, and there can be no question that palliative and end of life care should be part of the conversations happening in integrated care systems (ICSs) across the country right now around how to tackle the long-standing health inequalities that COVID-19 has highlighted.
Our call to action is therefore for every reader of this blog to consider what they can do to contribute to the collective effort that is needed to turn the Ambitions into reality for all.
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.
John Powell
John Powell MBE, Associate of the Directors of Adult Social Services (ADASS) .
A social worker by profession, John worked in local authority children and adult social care for 36 years before retiring from his Corporate Director role in August 2016.
John’s lived experience as a carer and a social care professional was honoured in the Queen’s Birthday Honours List 2018, when he was awarded an MBE for his services to vulnerable people.
National ADASS Policy Lead for End of Life Care means that his Champion role is an active one and compliments his passion for ensuring that Dignity in Care underpins a quality service delivery and positive outcomes for all. John has been representing ADASS on the NHSE/I Programme Board for EOLC since its inception. John has also been chairing the ADASS EOLC leads network meeting since 2014.
Adrienne Betteley
Adrienne Betteley, Strategic Adviser for End of Life Care for Macmillan.
Adrienne is a nurse by background and has worked in a variety of settings including care homes and hospital but most of her nursing career was spent as a District Nursing Sister and Practice Educator working in Cheshire.
Adrienne then went on to do a number of different roles which were all focusing on End of Life Care in a variety of settings such as a Primary Care Trust, Cancer Networks and Strategic Health Authorities. She also undertook some national work on Advance Care Planning as part of the team leading on Preferred Priorities for Care in England.
Adrienne was also a trustee at her local hospice for 4 ½ years and a trustee of Care2Save for 2 years. She was also an elected Board member for the North West RCN Board for 2 years from 2006.
In 2011, Adrienne joined Macmillan Cancer Support and has worked there in a variety of roles, mostly focusing on End of Life Care. Her current role commenced in January 2020 as Strategic Adviser for End of Life Care, which is UK wide and provides expertise and advice internally and externally. Adrienne represents Macmillan on several national groups in England such as the Ambitions Partnership of which she was elected as co-chair in January 2019 and she also sits on the National End of Life Care Programme Board for England.
To find out more about the reasons she is passionate about End of Life Care, you can read this article or listen to her on the “You, Me and the Big C” podcast.