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Developing benchmark standards for carer support – Hospice UK

What have we done?

We worked in collaboration with Hospice UK to develop benchmark standards into the structures and processes that should be in place to support carers of hospice patients at end-of-life.


Why is it important?

Recent Government and NHS policies have set out the important role played by family carers and their need for support, particularly when caring for someone the end-of-life (End-of-life Care Strategy, 2008; NHS England’s Commitment for Carers, 2014). Local authorities now have a duty to provide services to carers that prevent, reduce or delay them developing a need for support (The Care Act 2014). In May 2016 NHS England set out plans to support carers, including that “carers will have their support needs assessed and will receive an integrated package of support in order to maintain and/or improve their physical and mental health” and that “carers will be supported by information sharing between health, social care, carer support organisations and other partners”.


Despite this, a Carers UK survey in 2015 reported that 76% of carers are concerned about the impact of caring on their health over the next year, and while systems have been set up to allow sharing of information about patients at the end-of-life, there is no standard process for recording details of carers, including assessments carried out and any needs identified.


How did we do it?

We undertook an expert consultation with a range of professionals and carers including representatives from hospice organisations, GPs, Community Nurses and clinical commissioning groups to investigate factors that affect organisations’ ability to provide family carer assessment and support. This included the identification of factors specific to the organisations themselves which help or hinder carer support, as well as aspects of the wider health and care system.


The findings from this piece of work have helped us to create recommendations on standards for structures and processes that should be in place for assessing and supporting carers during end-of-life care, please see below for the full carer recommendations.


Who are we working with?

Hospice UK


Downloadable resources



More information

For further information please contact Michael Spence (Programme Manager)