Impact - Patient Leaders(Cohort 2)

The following four areas emerged as areas of impact:

  • Influencing provision of local services
  • Influencing and shaping commissioning priorites
  • Redefining and influencing Patient & Public Involvement locally
  • Impression and recognition of Patient Leaders by stakeholders

Influencing provision of local services

The Patient Leader make observations in their community and use knowledge they have learnt in training sessions and engagement activities to create projects. Below are some examples of the projects underway in our community:

  • A Patient Leader noticed a surplus of young Bangladeshi women who were on anti-depressant medications. She believed the women could change their situations by adjusting their behaviour and physical activity level rather than relying on medications. After surveying groups of women under 30 years old and over 30 years old, she designed an experiment to take the women off the medication. She provided details of free gym, swimming, English and cooking classes in the community. Women who participated in these activities showed changes in their sadness and moodiness. The activities allowed some to become empowered and enabled to overcome their fear of depression or isolation by engaging with others in their community.
  • A Patient Leader was interested in identifying health issues in Tower Hamlets, finding its contributing causes, and offering a solution. She spoke to a variety of individuals including GPs, school nurses, health visitors, and parents and found that asthma was a concern for many. Parents voiced their concerns to the Patient Leader regarding overcrowded housing, lack of hygiene, and minimal open spaces for children to play due to pollution. The Patient Leader also found a lack of education among parents, which is a stumbling block to their empowerment and knowledge of health education.
  • Similar to the Patient Leader above, another Patient Leader was interested in asthma in the community and started the “Asthma Project”. The intention was to create a focus group to work with Tower Hamlets Clinical Commissioning Group to identify themes and patterns in how parents and GPs are handling asthma in children. Recognising key problematic areas can produce action points to address the health concern and reduce the number of asthmatic cases seen at A&E. Another Patient Leader wanted to change the system of making appointments at the GP surgery. After speaking to members of the Tower Hamlets community, she noticed how long it took to make a GP appointment, which resulted in longer queues at A&E. 
  • Patient Leader is working with families with twins/multiple births, or 2 or more children under the age of 5 – a vulnerable sector of the community that has been neglected from social services. She is working with stakeholders to create a system of care packages for these families and assess need on a family basis.

Influencing and shaping commissioning priorities

  • A Patient Leader became involved with an Integrated Personal Commissioning workshop organized by Tower Hamlets Clinical Commissioning Group. Various health professionals including GP’s and mental health, social services, advocacy charities, Patient Leaders and service users were invited to discuss new ways in which care packages were allocated, assessed and funded. The idea was to give disabled residents more independence and control over their own personal budgets and care plans, giving them the freedom to spend the funds on things they actually felt were beneficial to their lives and employ a carer they actually liked and wanted. During the workshop I know I made quite an influence being one of the few wheelchair users, who also received care plans. 
  • Two Patient Leaders founded a co-production group called Realising Change, after attending the Integrated Personal Commissioning workshop and meeting a representative from Real. This co-production group meets once a month before the Clinical Commissioning Groups meet for their monthly meeting. The purpose is to discuss the progress of the new care package setup and to get new users to agree on having an independent budget.
  • One Patient Leader is a member of the Shadow People’s Panel, which is run by Tower Hamlets Clinical Commissioning Group to engage residents in shaping future services. Patient Leader created a virtual hub for individuals with long-term medical conditions. The design was previously in existence for clinical use but not universal use that could be accessed from different private establishments. She is currently assisting the marketing sector of Tower Hamlets Clinical Commissioning Group to develop the database.

Redefining and influencing Patient & Public Involvement locally

  • Patient Leaders are signposting what they have learnt at engagement activities for local residents to learn more. They are able to share the information and connect people to the 
  • right resources.
  • A Patient Leader joined a school group to discuss everyday issues parents face and work as a team to identify and problems and resolutions.
  • Many Patient Leaders attended The Big Conversation Event, which allowed them to voice their opinions and share ideas with others from the community. They were participating in critical and interactive discussions regarding the challenges and issues faced in managing health and social care in Tower Hamlets.
  • A Patient Leader had the opportunity to attend Qualitative Research training, which was a four-day course on learning the methods to obtain qualitative data from the community. The course taught the Patient Leader how to engage with the community through focus groups and one-on-one interviews.   
  • A few Patient Leaders completed Enter and View Training, a one-day course that teaches participants how to be a good authorised representative and learn how to assess services. By visiting hospitals and care homes, Patient Leaders are able to observe how services are delivered and listen to the concerns of service users. Patient Leaders report this information back to the service provider to raise issues for improvement as well as recognise the service given.
  • Patient Leader chairs ‘Your Say Your Day’ events sponsored by C.O.I.N. (Community Options Involvement Network). One event was titled Parity of Esteem, which means one’s mental and physical health is valued equally. The event included speakers and workshops that covered the elements of Parity Of Esteem, and the national priority of improving outcomes for individuals with lived experience of mental health. Another event was on Medication and You, which included speakers and workshops that covered mental health treatment information and options, and addressed concerns on effects of drugs on patients.
  • Patient Leader participated in the Mental Health First Aid Standard Course. This training course run by MHFA England teaches participants how to recognise signs and symptoms of various mental health issues and how to guide others toward appropriate professional help.
  • Another Patient Leader is the Chair for Tower Hamlets Mental Health Task Group. This group plans projects and workshops addressing various aspects of mental health.
  • Patient Leader stood for a seat as a Governor from Tower Hamlets on the East London NHS Foundation Trust Council of Governors as an elected member from 2015-2016.

Impression and recognition of Patient Leaders by stakeholders

To complete their evaluation reports, Patient Leaders reached out to stakeholders with whom they have been working to comment on their work ethic and contribution to the initiative.

Testimonies on Patient Leaders