Changes reported by Patient Leaders - Cohort 2

Together the Patient Leaders were involved in excess of 600 hours of activity relating to health and social care engagement during the course of the year. The scope of these activities ranged considerably from attendance at partnership group meetings, sitting on consultation panels, attending briefing and training sessions, peer mentoring activities and one-to-one meetings with commissioners, health professionals, community members, experts and decisions makers.

Below is a summary of the findings from the questionnaires, interviews and individual reports.

The Patient Leaders remain actively involved in taking on leadership roles in health and social care in Tower Hamlets.

The Patient Leaders Programme is a series of coaching and training sessions, and engagement activities intended to build leadership skills in participants. The structure of the programme provides a platform for Patient Leaders to meet people who share similar ideas and a passion to create change in the Tower Hamlets community. We recognize varying levels of health care knowledge and leadership experience based on educational background or past employment opportunities. However, with a focus on agency, awareness, and association, Patient Leaders can gain personal and professional development to take on leadership roles in their community. A Patient Leader expressed, “I now have a better understanding of the leadership concept, what it entails to be a good and productive leader; both in theory and practice.”

Some of the Patient Leaders commented on the coaching sessions as an integral part of their training. These one-on-one sessions enabled both Patient Leaders and project managers to get to know each other better and to discuss how Patient Leaders could be supported in their endeavors.

According to two Patient Leaders, the coaching sessions:-

“…helped me open up a conversation with a healthcare professional whereas before I would not have the confidence to do so.”
“…identified my potential and set personal goals. They [Nurun and Jane] both championed me with words of encouragement, which gave my morale a boost.”

Another Patient Leader stated, “The support from Social Action for Health was a back bone. It gives you a title, which allows you to engage in the NHS hierarchy. Social Action for Health is a point of reference and gives legitimacy to your voice and an extra identity.”

Similar to the evaluation reports from Cohort 1, the evaluation reports from Cohort 2 suggest a range of changes amongst Patient Leaders that can be summaried as follows:

  • Personal skills & abilities

  • Knowledge & awareness

  • Networking

Personal skills & abilities

The evaluation reports show an increased sense of agency and refinement of interpersonal skills in Patient Leaders. They have increased their confidence and self-esteem by interacting with each other and others in their community.

“I have become more independent.”
“I have also learnt to speak up for myself.”
“I feel that I have learned a great deal about myself and how others perceive me.”
“It [The programme] enabled me to broaden my vision, helped me raise the expectations I have of myself, assisted me in exploring my potential.”

Training sessions on active listening and effective communication taught Patient Leaders the four parts of speech and the importance of ‘I’ statements. They have become more aware of the value of their voices and providing relevant input in conversations and at engagement activities. They are making a conscious effort to formulate their sentences on views on issues. Additionally, reflection activities provided insight to the practical applications of training in their projects and everyday life. “It allowed me to actively make use of the material given to me and applying the theories to real life situations.”

Patient Leaders have also learnt the value of working together as a team to empower others. One  Patient Leader commented, “I am now able to liaise with others to seek support and offer support.”

Patient Leaders are empowered to take personal areas of interest such as disability rights, mental health, and parenting to be advocates and a voice for those who cannot speak up for themselves. They provide perspective to health care professionals and stakeholders to support others in similar circumstances. Training on dealing with messes has helped PLs overcome difficulties and familial circumstances, and put them in the past to see health care in a new way.

Two Patient Leaders stated,
“I have been able to influence and set an example that disabled people have a voice that a lot of disabled people want to make an impact on the health care they receive.”
“I believe the Patient Leaders course has shown me a way to move forward. It has shown me a way to put my experiences into perspective, also shown me a positive side to my experience.”

Knowledge & Awareness

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 made and how to influence these decisions. Some patient leaders have expressed their impression of NHS before going through the programme.

“…the NHS is very hidden, it’s another world.”

“All my life I had used health care services yet didn’t have a clue what was going on behind the scenes.”

As a result of training sessions and engagement activities, Patient Leaders have gained insight into how NHS England operates, prioritizes and spends funds on services. Some members of Cohort 2 were given a virtual tour of NHS and its organizations, which allowed them to directly access the part of the health care system in which they are interested in leading change. Additionally, Big Conversation and Seeing the Bigger Picture workshop trainings allowed patient leaders to learn about the variety of services NHS offers and to have face-to-face contact with Clinical Commissioning Group commissioners and other stakeholders. At meetings with stakeholders, Patient Leaders are representing Tower Hamlets residents and they discuss issues of community involvement, language barriers, and lack of confidence that may prevent others in the community from approaching NHS.

“The wider knowledge that I have gained, about the NHS has enabled me to advise members of the public, with confidence; directing to appropriate services and signposting, or simply listening.”

Not only are Patient Leaders using increased knowledge and awareness to make change in health care but also in their personal lives. Several Patient Leaders have commented on how different elements of training and engagement activities have been integrated into everyday practices.

“Learning about difficulties and messes, I have learnt the techniques behind tackling changes, whether in my personal life or in healthcare.”

“Going to engagements with an emphasis on good living and health eating, encouraged me to make changes to my own lifestyle and diet.”

“I personally have felt better for making changes, and I don’t think I would’ve considered making them, if I hadn’t become more aware of health problems affecting Tower Hamlets residents, but I also feel like an advocate for better living.”
“…improved the way I speak at home, especially with my children, before we would all try to talk over each other, trying to get a word in edge ways. Now I encourage each of us to stop, wait our turn, and listen to what the other person has to say.


The programme takes a social approach to fostering change in the community by creating cohorts to serve as support systems for Patient Leaders “Change is a dynamic process where building relationships and trust play key roles.” The cohorts are designed by bringing people from diverse backgrounds together to share experiences. PLs are able to see things from a different perspective and try to understand another person’s point of view. They have become more mindful in their interactions with others. One Patient Leader expressed:
“I need to be sensitive of ethnicities and how communities are labeled. I live in a diverse neighborhood in the city and I need to know the challenges that the community faces so I can represent their voices to the best of my abilities.”
In addition to building relationships within the cohort, Patient Leaders are conversing with stakeholders in the health care system at engagement activities for project support and training enhancement. These connections help them gain more information about an area of interest as well as opportunities to contribute to services.
“When I had weekly training sessions to go to I felt I could actually have a impact on our community, I was meeting local residents, communicating with the other patient leaders, it feels like you’re creating new networks.”
Patient Leaders continually avail themselves of opportunities to further their personal and professional development through their network. Several patient leaders are using transferable skills from the programme to stand out as qualified candidates in the workforce.
“I am now considering taking a few courses to equip myself for a better job prospect.”
“I have learnt some invaluable skills that I hope I can bring to future employment or even more voluntary roles.”

PatientKye Lockwood