Outcomes of Programme: Changes reported by Patient Leaders

We recognise that the ability of some people from the local community who want to take on leadership roles can and will develop naturally over time. However, the evaluation suggests a range of changes amongst the Patient Leaders that can be summarised as follows:

    1. Knowledge & awareness
 2. Personal skills & abilities
 3. Social networking

The patient leaders have gained knowledge in a number of different ways, however a key area of change is increased knowledge in local NHS services, how decisions are taken and how to influence the decision making process. As one Patient Leader mentioned she has:

“...learnt about stakeholders in Tower Hamlets, even though I knew about services available in Tower Hamlets, I now know a little more”

Increased awareness of process has emerged partly from increased knowledge but also from direct experience in the programme (“apply learning to contribute to other meetings”) and the opportunity to participate in meetings, events and presentations with service providers and commissioners. For example, several patient leaders have noted an awareness of how professionals relate to them, their ideas and their role:

“...before we’d go to Clinical Commissioning Group ... now we have a voice and know our rights...”

“...relationships established with key services, no exposure prior to this programme.”

Enhanced Personal Skills & Abilities

Confidence to engage with decision makers, to communicate ideas and to manage ones self was a recurring theme.  As one patient leaders expressed “I used to back out of things before and was always criticising myself. Since doing Patient Leadership Programme, I have not been doing this as much.” Another patient leaders stated:

“ Now when I am invited to an event, I have a voice to be able to speak on behalf of others. Some things you are invited to, you didn’t know if you could make a difference and have an impact.”

The confidence gained has not just supported patient leaders in their roles but has translated into action in their daily lives.

This increased sense of agency has lead to patient leaders expressing an increased sense of self esteem:
“We value ourselves more, ‘I am something’. Some 8/9 months ago, I didn’t value myself as much”

Another area of development for several of the patient leaders was their ability to ask critical and challenging questions. For example, one states that “I am able to question ‘who is it going to value and how?’”

Social Networking

The benefits of a social approach to patient leadership were highlighted by several patient leaders who recognize the power of social capital in enabling change within the NHS- “People make the difference”. Apart from accountability to each other, mutual support, sharing contacts and knowledge, the differences between the group was seen as an asset.

Several of the participants have also been engaged in patient public involvement activities prior to becoming patient leaders. This experience helped shaped their participation and they have reflected on the benefits gained from undertaking the work as a team of patient leaders. They have noted that they “gain from each others energy” as they “play off each other” and felt accountable to each other.

The patient leaders have also recogized the power of the group and of them working together. For example, a participant reflected that:
“Previously involved in other activities but patient leaders is a group of support, use each others energy to achieve objectives"

Evaluation/Achievements - Cohort 2

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