OU researchers launch new guide to support palliative and end of life care

Categories: Policy and Research.

Researchers at The Open University have produced a new ‘Grab and Go Guide’ to help improve palliative and end of life care.

The easy-to-follow guide draws from research into The Ambitions for Palliative and End of Life Care: a national framework for local action (2021-2026) and will enable those working in the sector to better follow the six ambitions set out in the framework and ensure everyone has access to quality end of life care.

  1. Each person is seen as an individual: I, and the people important to me, have opportunities to have honest, informed and timely conversations and to know that I might die soon. I am asked what matters most to me. Those who care for me know that and work with me to do what’s possible.
  2. Each person gets fair access to care: 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.
  3. Maximising comfort and wellbeing: My care is regularly reviewed and every effort is made for me to have the support, care and treatment that might be needed to help me to be as comfortable and as free from distress as possible.
  4. Care is coordinated: I get the right help at the right time from the right people. I have a team around me who know my needs and my plans and work together to help me achieve them. I can always reach someone who will listen and respond at any time of the day or night.
  5. All staff are prepared to care: Wherever I am, health and care staff bring empathy, skills and expertise and give me competent, confident and compassionate care.
  6. Each community is prepared to help: I live in a community where everybody recognises that we all have a role to play in supporting each other in times of crisis and loss. People are ready, willing and confident to have conversations about living and dying well and to support each other in emotional and practical ways.

The research, which was conducted by Dr Erica Borgstrom, Dr Joanne Jordan, Dr Una St Ledger and Claire Henry MBE and funded by Marie Curie, looked at how successfully the framework was being embedded.

They discovered that local health and social care leaders were struggling to effectively translate the framework into action and therefore in some areas people were not accessing the quality end of life care they needed.

Using their findings they created Small Steps, Big Vision – Grab and Go Guide to support the realisation of the Ambitions for Palliative and End of Life Care and the customisable Small Steps, Big Vision – Grab and Go Customisable Template to support the realisation of the Ambitions for Palliative and End of Life Care to enable care providers to deliver accessible, responsive, effective, and personalised care at the end of life.

Dr Erica Borgstrom, Senior Lecturer, End of Life Care, at The Open University said:

“By providing prompts and examples, our Grab-and-Go guide supports people to develop ideas for local action. We have already heard of people using it successfully in workshops to spark discussion and planning.”

Adrienne Betteley, Strategic Advisor for End-of-life Care, Macmillan Cancer Support said:

“The research has triggered dialogue within, and between, Ambitions Partners member organisations and will continue to have a ripple effect on how the national framework can have even greater impact.”

The guide focuses on the eight foundations in the Ambitions framework which are recognised as being fundamental to the delivery of high-quality palliative and end of life care.

  1. Personalised Care Planning
  2. Shared Records
  3. Evidence and Information
  4. Involving, supporting and caring for those important to the dying person
  5. Education and Training
  6. 24/7 Access
  7. Co-design
  8. Leadership

It provides prompts to think about these foundations and as well as giving examples of good practice to facilitate improvements to care

In September the research team will be holding a webinar for anyone interested in learning more. Please contact wels-research-admin@open.ac.uk for more information.

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