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Building and sharing: insight into patient involvement in delivering the Future Hospital vision

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Reflecting on her involvement as a Patient and Carer Network (PCN) member, Carol Caporn discusses the design and delivery of healthcare, strategies to challenge the hospital culture and her hopes for the future of person centred care.

I have been a member of the Royal College of Physicians (RCP) PCN since 2012. My personal experience has been in social care. I am particularly interested in how the ‘fault lines’ within, and between, organisations and systems make it difficult to provide whole person centred health and social care.

How can an individual continue to be treated as an adult, and respected as a citizen, even when they assume the role of being a patient or service user?

I was a member of the Future Hospital Commission (FHC) workstream focused on patients and compassion. I believe that our understanding about what makes a positive difference to a patient’s experience of healthcare has influenced and informed the recommendations of the FHC. The Commission’s vision for the Future Hospital (FH) is of an evolution to a new model of care which requires changes to the way hospital services are planned, designed, delivered and supported.

Putting principles into practice

I was very pleased to be invited to join the FHP phase 1 development project in North Wales as the PCN member on the team. This has been a chance to see at first-hand how the FH principles and values could be put into practice to improve clinical outcomes and the patient experience. As the project evolves, one of the key questions for patients is how will we know that a change is an improvement for the patient experience, and how can these changes then be rolled out to sustain that improvement?

How can an individual continue to be treated as an adult, and respected as a citizen, even when they assume the role of being a patient or service user?

Carol Caporn

Involving local patients and PCN members in service design, delivery, monitoring and evaluation is a new learning experience for the RCP and the PCN. It has been suggested that such activities represent a ‘cultural’ shift in patient involvement. Patients ‘must make a transition from being mere “users and choosers” to being “makers and shapers” of health services’.

This seems to me to be a logical extension of the current experience of patient involvement as ’experts’ and as decision making partners in respect of their own care.

The purpose of patient involvement

In the phase 1 development sites the purpose of patient involvement is to ensure a patient perspective is present across the life of the project, offering a ‘reality check’ for clinical colleagues; being an integrated part of the decision making and being able to participate actively as the project evolves.

The experience of each of the local patient and PCN representatives, as well as the clinicians has been different. Each team has had to find ways of building and sustaining working relationships. The clinical team members have the advantage of a common language, day-to-day interaction on site and opportunities for both formal and ‘corridor’ conversations. Careful thought has to be given as to how the local patient representative and the PCN member can be linked into the action as it evolves. This has been particularly important when organisation pressures deflect attention to other priorities and support for patient representatives is not provided.

Sharing and evolving

The quarterly learning events hosted by the development sites have been crucial to building networks and sustaining relationships. These events provide opportunities to catch up with project development progress (highs and lows), to share experiences and good practice, and to provide mutual support.

Patient involvement in health policy, strategic planning and service design is becoming high profile in NHS thinking with an emphasis on the added value ‘patient leaders’ can bring to improving the experience of care and the health and wellbeing of others. I think the RCP and PCN have still some way to go to achieve a ‘patient leader’ level of patient involvement, but the FHP development sites provide opportunities to nurture this role.