What is the challenge your project is going to address and how does it connect to the theme of 'How can improvement be used to reduce delays accessing health and care services'?

St Michael’s Hospice provides place-based palliative and end of life care in a coastal area with inequalities and deprivation. Informal carers play a fundamental role in the lives of patient’s receiving palliative care services.

Well-informed, supported carers are more likely to access services, improving their own health, wellbeing and resilience.  They are more likely to advocate on behalf of and ensure timely access to services for those they are caring for. Both reduce the risk of crisis.

In areas of health inequalities and deprivation, additional challenges in terms of health literacy, isolation and carers having underlying and ongoing health issues of their own are more likely.

To provide appropriate and accessible support for carers, it is vital to understand what carers needs are, how they would like them to be met, what support they are already accessing and where the hospice can best target its specialist skills and resources.

What does your project aim to achieve?

The hospice uses a public health model of service delivery with strong roots in compassionate communities.

Using an experience-based co-design approach the project aims to hear and understand the world of informal carers and their experience of caring for someone receiving palliative care. This will help identification of support and information which could enhance carers experience from early in the palliative care journey through to bereavement.

It will aim to:

• understand the lived experience of carers
• identify current sources of support for carers and their effectiveness in helping access timely advice and treatment
•  identify gaps in support
• identify education needs and preferred methods of learning
• identify information gaps and preferred way of filling these
• deliver a sustainable support and resource offer for carers
•  explore what aspects of the whole hospice offer could support carers
• identify a group of carers willing to act as a lived experience resource for the hospice

How will the project be delivered?

A project group will be formed bringing together a range of expertise and skills from across the hospice including clinical, digital and compassionate communities. Others will be co-opted as required.

Using an experience-based co-design approach the team will research storytelling methodologies as an information gathering tool.

The story gatherer will collect experiences and stories from the widest possible range of carers across multiple settings.

Once stories are analysed, using an agreed methodology, the team will feed back findings to carers and teams. Co-design of a range of resources including digital options and signposting to other providers to enhance the experience of carers will then take place.

Quality Improvement methodologies will be used to test ideas and generate information and education options.

An agreed number of information and education options will be put in place with implementation and evaluation plans to confirm effectiveness.

The project will take place over 18 months.

How is your project going to share learning?

Learning will be shared via a dissemination plan developed to support engagement and learning internally and externally. This could include:

• Stories from carers shared with consent to increase awareness of their needs
• Project updates via Q website including lessons from the learning log
• Sharing with the organisation to support implementation of chosen outputs and drive service improvement
• Project participants sharing new skills and knowledge with team members
• Personal and organisational learning shared at a hospice Interdisciplinary Learning Forum accessible to all hospice employees and volunteers
• Submitting the project as an abstract for the Hospice UK annual conference
• Seeking to publish an article in BMJ Open Quality
• Leadership team sharing learning with peers within the Sussex Collaborative of 7 hospices and the regional group of the Hospice UK Executive Clinical Leads in Hospice and Palliative Care
•  Project lead seeking to share relevant learning via the Queens Nursing Institute