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Shining a spotlight on inequality

NHS England’s End of Life Care team recently hosted a webinar about health inequalities in end of life care. Here, Nicola Spencer and Professor Bee Wee from the team talk about the need to highlight and change the situation:

Everyone experiences death and dying in different ways, but should that experience be worse just because of who you are, where you live or the circumstances of your life?

The simple answer is no, absolutely not.

Sadly, however, palliative and end of life care can be harder to access for those who come from black and minority ethnic communities and deprived areas; those who are homeless; those held in secure and detained settings; those who have learning disabilities; those suffering with dementia or with long term conditions. And the quality of care they receive can be poorer.

Reducing these inequalities remains a collective responsibility for all of us involved in commissioning and providing palliative and end of life care.

The second ambition in the Ambitions for Palliative and End of Life Care: A national framework for local action is framed as ‘each person gets fair access to care’. In other words, from the individual’s perspective, “I live in a society where I get good end of life care regardless of who I am, where I live or the circumstances of my life”.

The building blocks that are necessary to help realise this second ambition include: building community partnerships; undertaking population based needs assessments and commissioning; developing person-centred outcome measures – and, above all, an unwavering commitment to achieve equity in access, provision and responsiveness.

NHS England’s End of Life Care Team hosted a webinar to put a spotlight on the issues and challenges faced by different communities and to update on work going on both internally and externally to support this important agenda and reduce inequalities.

There was an insightful overview from colleagues at CQC on their thematic review of inequalities in end of life care, during which they talked about some of the examples of best practice they had come across.

We heard about the model that Inclusion Healthcare Social Enterprise have adopted to provide primary care to homeless people – which included the practice working closely with their local hospice to make sure this cohort of patients get the right care and support.

We also heard from London’s Kings College about the challenges Lesbian, Gay, Bisexual and Transgender people experience around end of life care. It saddens us to hear that it’s not uncommon for this cohort to feel that society doesn’t validate the loss of a civil partner quite as much as they would understand and validate the loss of a husband or wife.

In addition, we heard about the collaborative work between NHS England and Macmillan to reduce inequalities for the prison population, including the launch of a community of practice and the development of a charter, based on the Ambitions, but specifically focussed on what they mean in practice for people nearing the end of life in this setting.

We would encourage you all to listen to the webinar – as it gives real insight into the challenges experienced by different communities and will hopefully motivate you to consider how your work is supporting this agenda.

Later this year, we will host further seminars on inequalities in palliative and end of life care for other groups of people. If you would like to be added to our contacts database to receive updates and information on events and developments in palliative and end of life care, including future webinars, or if you have any other questions then please email england.endoflifecare@nhs.net.

Nicola Spencer

Nicola Spencer joined NHS England in April 2013 and is currently a Programme Support Manager in the Long Term Conditions (children and adults) Unit.

The unit works to improve the quality of life and end of life care for people with long term conditions and their carers.

Nicola has a degree in Business and Event Management and a Post Graduate qualification in Healthcare Leadership. Prior to joining NHS England, she started her NHS career in an Acute Trust working as a phlebotomist, before moving into a commissioning role where she worked for over four years within a service improvement team in Calderdale PCT.

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. natasha webster says:

    who are these?