Zoe Ashton, a CLAHRC Greater Manchester Facilitator, blogs about our work with Hospice UK to improve support for family carers.
I am new to working in end-of-life (EoL) and palliative research and, when I initially found out about CLAHRC Greater Manchester’s involvement in work supporting carers of people at EoL, it seemed obvious to me that this was an important issue. I was surprised to find that it was only in 2014 that The Care Act set out carers’ legal rights to assessment and support, and that previously there was wide variation in provision across the country.
The Care Act came into force in April 2015, and now local authorities are required to assess a carer’s need for support, and along with the carer will agree a support plan, which sets out how the carer’s needs will be met. In 2014 NHS England published the ‘Commitment to carers strategy’ which included plans to help NHS staff identify, involve and recognise carers as experts, and as individuals with their own needs, choices and aspirations. Work is underway on a new National Carers Strategy, which is expected to set out the need for services to improve the way that they identify, support and involve carers in planning care – including at EoL. However, while there has been a lot of policy, the support available to carers within the NHS is still patchy.
Hospices have a long history of holistic care which includes supporting the families and friends of people in their care, and many hospices have developed services to support carers and the bereaved. As hospices are mostly independent organisations, these services have often been developed in isolation, and there are no guidelines on how to do this in practice. As part of our EoL programme, we are collaborating with Hospice UK on developing benchmark standards for the procedures and structures around how carers are supported in hospices. To do this we will be talking to hospice staff to identify enablers and barriers to supporting carers, and involving key stakeholders, including carers, to agree the standards. With a systematic approach to carer support it will be possible to audit hospices, to better understand what is happening across the country, identify any gaps in services and highlight good practice.
This project will enable identification and spread of good practice and, along with the Carer Support Needs Assessment Tool, offers a practical way for hospices to identify and support carers. We hope that this will be yet another example of hospices leading the way in improving care, which other settings will learn from.