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‘What matters to you’ day – starting conversations that can transform care

Bev Fitzsimons and Joanna Goodrich 05 June 2018

Head of Improvement Bev Fitzsimons and Point of Care Foundation Associate Joanna Goodrich discuss the ‘What matters to you’ initiative that encourages hospitals to put patients first.

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Tomorrow is ‘What matters to you’ day, a campaign across the UK to encourage conversations between people who provide care and the receivers of that care – individual patients and their families and carers. The idea is that the conversation should move from being based on the question ‘What is wrong with you?’ to the more patient-centred ‘What matters to you?’ On this basis, care can be designed to more fully suit patients’ needs – in contrast to prevailing practice that puts the clinician at the heart of the system.

At the Point of Care Foundation we support this initiative and welcome the fact that so many organisations are taking part. Anything that helps organisations to develop conversations between patients and carers, make care less transactional and more collaborative, and level the power differential between carer and cared-for, has to be a good thing. We hope it will sustain beyond a day and that the ethos of the campaign will be embedded within participating organisations. Our experience is that for this to happen there needs to be buy-in at all levels of an organisation. It isn’t an easy journey and doesn’t happen overnight, but the results can be transformational.

For us, the question ‘What matters to you?’ is the starting point for the work of our Sweeney programme. The programme works with teams delivering care to help them to see their care from the patient’s perspective, to use empathic skills to better understand patients’ needs, and to adjust their practice accordingly. We’ve provided training and ongoing support to around 200 organisations across the UK and increasingly overseas. It is often small, practical changes that make the biggest difference to patients.

Dementia

Among the participants are four specialist dementia units in Scotland: Strathbeg (NHS Grampian), Balmore (NHS Greater Glasgow & Clyde), Hatton Lea (HC1- North Lanarkshire) and Prospectbank (NHS Lothian). In 2016, they took part in training sessions we ran for Health Improvement Scotland, introducing the theory and practice of experience based co-design (EBCD) as a tool for quality improvement which ensures that what matters to patients and staff drives changes to services.

Following the training, 48 members of staff and 43 relatives and carers shared their experiences of working in the service, or receiving care, and about 120 hours were spent by the project team observing the service. Together, staff and relatives identified the key areas they want to improve, including stress and distress, activity, mealtimes, environment, building a strong team, handover and staff communication, and information for families and carers.

The projects are now into the improvement phase, in which they are creating ideas and testing them together to address these issues. The results are practical changes to practice, such as the use of ABC charts in ‘stress and distress’, personalised activity boxes, use of carers’ information packs prior to admission, staff communication at handovers, and measures to address noise levels.

Maternity

A further example from Scotland is in Ayrshire and Arran, where the EBCD approach is being used in maternity services to improve antenatal education. The project has again identified practical steps to improve practice, such as improved information resources for antenatal classes, changes to midwives’ facilitation style and greater interactivity, consistency of content, flexible class times, greater use of social media, changes to the venue and environment, and more involvement of men/partners in the classes.

The New Beginnings project at St George’s in Tooting, supported by the Point of Care Foundation, is using the same co-design approaches to understand what matters to women who give birth in operating theatres, and make improvements in the things that really matter to women and families. The project aims to make the operating theatre a kinder, friendlier and more caring place to have a baby, and bring families closer into the heart of maternity care at St George’s

End of life care

At Ashford and St Peters Hospital in Surrey, a palliative care team joined our collaborative ‘Living Well to the Very End’ programme, which used patient and family centred care (PFCC) to drive improvements for patients approaching the end of life, and their carers and families. During that programme, staff used ‘patient shadowing’ to learn more about the patient experience, and over a few weeks identified a range of areas for improvement. Some were small changes to the care environment, but more profound was the recognition of the need for better communication. The project actually led to the wider adoption of the ‘What matters to you’ approach in the hospital.

Through programmes such as these, we believe it is possible to develop care that is truly patient-centred across any type of care setting. It requires patience and commitment from care-giving teams and their organisations, and the courage to have routine practices challenged, but it can make a huge difference to patients and their families and carers. It can make a big difference to caregivers as well – often giving them the chance to reconnect with their aims and motivations as care providers in a challenging healthcare environment. But it can’t happen unless carers are prepared to take the first step by asking ‘What matters to you?’