• 6Nov

    ‘Beyond the usual suspects’: making inclusive patient and public involvement possible

    On Tuesday 4 November, PiF attended the King’s Fund Annual Conference on Transforming Patient Experience, held in association with the Point of Care Foundation.

    The focus of the day was improving experiences of care for the most vulnerable people in society, and the morning plenary session highlighted a number of key issues.

    Stewart Moors, lived experience member of the Equality and Diversity Council, NHS England and Co-chair, Greater Manchester NHS Values spoke from personal experience about how stigma for vulnerable groups, such as  homeless people, drug users,  vulnerable migrants, sex workers and traveller communities, is ingrained within the healthcare system. He spoke about the barriers that are created and the significant levels of distrust and anxiety that exist, impacting the access of services and experiences of care.

    Peter Beresford OBE (Professor of Social Policy, Brunel University London, and Director, Centre for Citizen Participation) highlighted the need to open up much more widely opportunities for patient and public involvement in healthcare, and highlighted a number of groups that have been identified as being significantly under represented in ‘involvement’, including older people, people living in residential services, prisoners, homeless people and travellers.

    Communication issues have been identified as a driver for exclusion, including for those with sensory impairment and language barriers. He also highlighted people who aren’t computer literate or with limited/no internet access as being at risk of exclusion from current involvement approaches.

    Referencing the Shaping Our Lives – Beyond the Usual Suspects report and tools for engagement, he called for organisation to make inclusive involvement possible by developing involvement or engagement strategies that are creative and innovative, that meet people on their terms and in situations that are familiar to them, and that use collective as well as individual voices.

    Ceinwen Giles (Expert in patient involvement and improving patient experience) built on this theme, stating that the experiences of vulnerable groups are under represented and unheard not because they aren’t talking, but because we, ‘the system’, is not listening.

    Picking up on the issue of the significant levels of distrust that exists within these groups, she talked about her experiences of engagement work and the need to allow enough time to build relationships and break these barriers down.

    She highlighted that to do this work we have to be able to be uncomfortable, to engage with differing views and experiences, to be challenged to do things differently. And the importance of working with community and voluntary sector organisations that already have relationships of trust with different communities.

    Gavin Terry (Policy Manager, Alzheimer’s Society) highlighted the importance of sharing with patients and carers what ‘good experience’ looks like, empowering them to challenge services that don’t deliver this. He also stressed the need to understand and deliver care in response to individual need, and the importance of integrating care in order to improve experiences for those with complex needs.

    Daghni Rajasingam (Head of Service for Obstetrics and Lead for Inclusion, Guy’s and St Thomas’ NHS Foundation Trust) spoke about the importance of supporting staff with training to work differently, to understand the experiences of the most vulnerable and redesign services to improve these experiences. This echoed the call from Peter Beresford to introduce real and meaningful user involvement at every stage of health professional’s training.

    You can find out further information about the King’s Fund Transforming Patient Experience 2015 Annual Conference here.