We speak to Mark about the progress made by participants in the programme in overcoming obstacles to building collaborative relationships.
What is your vision of a patient as a leader?
My vision is of a group of patients working as leaders across the system in a collaborative network modelling the mindset, behaviours and practices of reflective learners and embodying the principles, values and constitution of the NHS.
They might be involved in a governance, advisory or supportive role. In the future, I hope to see far more senior leaders acknowledging that they are also patients, service users and carers. However, what will be really important will be ‘the patient as leader’ mindset they bring, and how that influences how they work.
How does the programme explore patient leadership?
First, as a patient with long-term conditions and someone who is working at a number of levels in the system as a leader, I have influenced the development of the programme to ensure the mindset and practices of patient leadership are built into its design and delivery.
Second, participants attend the programme as a ‘collaborative pair’. Half of each pair is a patient leader who brings their experiences, knowledge and insights to share and the other half is a clinician or manager who wants to find new ways of working with patients and service users. Also the programme is co-produced with all the participants and they influence its ongoing development and design. In addition, we bring in external patient leaders to speak to the group.
How common are these types of relationships across the health service?
There are pockets of good practice, but we still need to see more senior leaders embracing these relationships. I also believe that if the NHS five year forward view, and the integration agenda in particular, is to be successful then we will need to see more of these relationships embedded across the system.
Key obstacles are the entrenched ways of thinking, attitudes and practices that influence the current culture of the NHS, which can lead to the prioritisation of professional views over the patient’s experience. In my experience, and that of other patients I work with, we can be on the receiving end of a paternalistic attitude that places us in a passive role rather than in the role of a collaborative partner.
Why is now the right time to be nurturing patient leadership?
Within the NHS five year forward view there is an emphasis on integration, health prevention and promotion, and the development of new health care models to meet local health care needs. All this requires a new relationship between the health and social care system, local communities and, in particular, the patients, service users and carers who regularly use health care services. This new relationship, what it looks like, how it can work, what it can deliver and how it can develop are explored in the programme.
How is the programme going so far?
Really well, we have generated lots of learning about what enables and what gets in the way of the new collaborative relationships. For instance, collaboration is supported when differences are acknowledged. In order for conversations to work fear, change, loss of power and the issue of identity need to be recognised and acknowledged. We will be reporting on the first programme when it finishes at the end of February, so watch this space!
Can you describe the background of some of the participants?
We have an eclectic mix: health care professionals from clinical commissioning groups, clinical research networks, hospital and mental health foundation trusts, and community health. Patient leaders who have experience of health care organisations, of working with a local Healthwatch, as lay members of executive groups, as members of working parties and patient participation groups, as well as a chief executive of local support services and patients who are active in third sector organisations.
How does the programme benefit participants?
Participants have talked about the opportunity to work in a structured environment, in their pairs, on a specific project. They have found having time and space to reflect really valuable. They have strengthened their local relationship and developed their ability to work collaboratively.
They have found that the tools and techniques used in the programme have supported them to make progress with their projects, as well as showing them how to work effectively together. They have learnt how to influence and collaborate with others across their organisations, particularly those who might initially have been sceptical.
Also participants have valued the opportunity to learn from the experiences of others and create a support network. All of this has increased their knowledge and experience, and reinforced their confidence and resilience.
What sort of feedback have you had?
Participants have said it has created a real change in their thinking and attitudes towards working with different groups. In the past it was often the case that when groups came together to talk about a project, problem or issue, it could quickly degenerate into people debating from fixed viewpoints reflecting their differing professional or functional backgrounds.
Participants have talked about how the programme and its focus on how to build collaborative partnerships has helped them feel confident in: reducing conflict and disagreement in the workplace; supporting a different outlook and set of practices built on consensus, agreement and the willingness to look at things differently; and seeking to understand the viewpoints and experiences of different groups. This has led to powerful outcomes, such as agreements around how to move forward with what had previously been perceived as an intractable problem.
What’s next for the programme?
We are also working with the North East Hampshire and Farnham vanguard as it explores how to deliver new models of care collaboratively with patients, citizens and communities.