The Innovation Unit created Coach4care as part of a year long Innovation program called Better Endings that sought to design new solutions in end of life care. This involved bringing together end of life care experts, members of the community and private sector organisations to design solutions that improve the lives of people living and dying in Lambeth and Southwark.
Why did we do this?
Everybody deserves great support for themselves and their families at the end of their lives. At the moment, our research shows this doesn’t always happen. There are currently 6.5 million informal carers in the UK and these numbers are expected to rise to 9 million by 2037.
Three in five people will be carers are some point in their lives and 1.4 million people provide over 50 hours of unpaid care per week. This unpaid care, provided by the nations’ carers, is worth an estimated £119bn per year – considerably more than total spending on the NHS. We wanted to acknowledge the contribution that carers and provide them with increased support.
This piece of work was complete in December 2017 and involved ethnographic interviews and co-design workshops with 12 carers and ex-carers, 3 caring organisations, 14 voluntary and community organisation, 15 health professionals and 20 professional coaches. We have also held various events to energise different stakeholders and the local community and built a database of over 150 people who are keen to be involved and/or have played an active role in shaping the thinking so far.
The research identified that carers face significant challenges and struggle to care for themselves. Caring for someone else requires a huge amount of resilience and in order for carers to provide the best care possible, they need practical and emotional support and they need to care for themselves. Carers also want to seen to be acknowledged for the contribution they make and recognised as the experts they have become.
Carers can experience extreme stress and trauma and lose their sense of self
Carers can experience significant financial, emotional and physical stress. They are often elderly, ill and disabled themselves and find their new role in caring for someone, who has now become dependent on them, very challenging. This stress, experienced by carers, saps their resilience. Social support is particularly important and can also provide practical support to ease the burden of caring. Carers may also need support with grief, both before and after someone has died.
The role of the carer is under-appreciated and professionals need to support them differently
Carers often fail to be identified by services involved in supporting people at the end of life and their needs are poorly assessed and addressed. Where the role of carer is given more formal recognition and is valued, this improves their well-being, where it is not, carers are more likely to feel burdened.. Research shows a good relationship with professionals reduces carer stress. Co-producing care, where the professional's’ role is to provide professional expertise and support alongside a strong recognition for the work that carers do, enables them to cope better.
Acknowledging death is hard and carers want to talk to those that understand
Discussing death proved particularly challenging to carers when the dying person did not want to accept or talk about dying. Many carers we spoke to attend peer support groups and found them very helpful. However they said that sometimes, you can end up in a negative cycle and it is sometimes hard to feel you are moving forward. People wanted structured conversations that helped them to reflect on their lives and make positive changes. On the flip side, ex-carers felt they had gained a huge amount of information from going through the caring process and they wanted to give back and turn their experience into something meaningful.
The challenges above helped to form some clear goals for the project. They were to:
help carers keep their identity and resilience by increasing social and practical support to better cope with negative experiences and allow more positive experiences both before and after death;
provide and increase support and recognition so that carers feel valued and competent and that their role has meaning; and
help ex-carers gain the skills and tools to have structured conversations with existing carers so they can increase their self care.
Creating the solution
We have used the goals to co-create Coach4care over a series of 5 workshops with carers, ex-carers, health professionals, caring organisations, professional coaches and designers.