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Ambitions for end of life care outlined in new framework

Author: Tom Moran
08 September 2015

A new national framework for action, published today, champions local leadership as a key factor in improving palliative and end of life care over the next five years.

The framework has been developed by the National Palliative and End of Life Care Partnership, which includes statutory bodies, charities (among them Hospice UK, Together for Short Lives, Sue Ryder, Marie Curie and the National Council for Palliative Care) and groups representing patients and healthcare professionals. It is aimed at local health and social care and community leaders.

Entitled 'Ambitions for palliative and end of life care: a national framework for local action 2015-2020', the document identifies six ambitions that the authors state should be the principles used to deliver care at a local level for people at the end of life.

The ambitions are presented as a method to answer many of the problems that have been identified in providing high quality end of life care.

While today’s publication recognises that there has been progress made since the Department of Health released its strategy for end of life care in 2008, it also emphasises that there is still much to be done to improve the care available to people at the end of life.

In particular, the framework emphasises "the need for honest conversation and the importance of joined up care," adding that this is a key factor for both patients and their families and carers. It also calls for "support from, and for, empathetic and competent health and care staff … for carers, families and those who are bereaved."

The framework has also identified measures – such as personalised care planning and shared electronic records – that are needed, and has called on clinical commissioning groups and local authorities to designate an organisation to lead on realising the ambitions.

Jonathan Ellis, director of policy and advocacy at Hospice UK explained that the new national framework proposes "a clear vision to leaders of local services about what needs to be in place for the provision of high quality end of life care."

He continued: "We hope these ambitions will provide fresh impetus for change and galvanise leaders of health and care services to take active steps to improve end of life care for all. This urgently needs to happen if more terminally ill people are to have more choice about where they receive care and so they receive support that is right for their needs.

"Hospices have an excellent track record of delivering high quality, compassionate care for dying people and their families, and have long established links with a wide cross-section of services in their local communities. As local leaders, hospices are well placed to help champion positive changes to end of life care provision in their communities.

"In addition, hospices across the country are working with hospitals, care homes and other providers to promote best practice in end of life care and improve service provision. Hospice UK is committed to working with hospices to expand this work and to turn this new framework’s ambitions into reality across all care settings."

The chief executive of the National Council for Palliative Care, Claire Henry, added: "Just as it’s often said that it takes a village to raise a child, it takes communities working together to ensure that people who are dying receive the care and support that is right for them.

"That’s why we welcome the ambitions set out in this document and the commitment to partnership working that runs throughout it. We very much hope this leads to strong and sustained national and local leadership and action, so that end of life care is made universally available for everyone, wherever they live, whatever their diagnosis, wherever they choose to be cared for, and whenever they need it."

Katrina McNamara, director of service and practice development at Together for Short Lives, explained the difference that the framework would make for children’s palliative care:

"Planning and talking about end of life care for babies, children and young people is challenging. Many professionals tell us that they struggle to talk about childhood death," she said. "Yet when families are supported to make choices that are right for them and plan for their child’s end of life care, it can make all the difference.

"Families need to know that their child will be given the best end of life care that is based on the child’s and families individual needs and is right for the child or young person’s age. And excellent care and pain and symptom management for a dying child should be central to their care.

"This ambitions document provides a much needed framework to develop a culture of good end of life planning for all at a local level – based on quality of care and on the wishes of the individual, regardless of their age.

"Everyone should be supported to have as good death as possible. It’s so hard for anyone to cope with childhood death; so we must do everything we can to help fulfil families’ end of life wishes for their child as these memories will stay with the family forever."

The full report can be downloaded the End of Life Care Ambitions website.

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