Primary care services are the frontline of the healthcare system, providing essential health advice and treatment. In 2019, the NHS established Primary Care Networks (PCNs) to make primary care more proactive, personalised, coordinated, and integrated. Since October 2022, the Brentwood Primary Care Network has commissioned two Occupational Therapists from Sport for Confidence to improve accessibility of accessing primary care for individuals in the Brentwood community, particularly focusing on individuals with learning disabilities. 
 
A key focus for occupational therapy is personalising care, understanding individuals' unique circumstances, motivations, and interests. By centering the voices of patients, we aim to improve health, well-being, and opportunities for meaningful engagement. This initiative led to the creation of the "Our Voice Matters" group, fostering reciprocal learning between healthcare professionals and patients. 
 
The Need for Improved Accessibility 
 
Approximately 956,000 adults in England have learning disabilities and face significant health inequities. They experience higher incidences of avoidable conditions such as cardiovascular disease, Type II diabetes, and hypertension, resulting in a life expectancy 13-20 years shorter than that of the general population. These disparities are driven by lifestyle factors and social determinants of health, such as poverty and social isolation. 
 
What is Personalised Care? 
 
Personalised care represents a new relationship between people, professionals, and the system. It leverages the expertise, capacity, and potential of individuals, families, and communities. Personalised care involves understanding each person's unique circumstances, preferences, and needs, ensuring they receive tailored support and interventions. 
 
"Our Voice Matters": Emphasising the Patients' Voices 
 
To address health disparities and enhance primary care accessibility, we recognised the importance of including the voices of people with learning disabilities and autism. This led to the creation of the patient and carer group "Our Voice Matters" which was named by the group members themselves. 
 
Establishing the Group 
 
To ensure that "Our Voice Matters" evolved organically, occupational therapists facilitated the group using a graded approach. The group was purposely started very informally whilst having lunch at the leisure centre, creating a non-pressurised and safe space with informal engagement and discussions. As the group's cohesion and confidence grew, we adapted the location to reach more people and introduced more complex topics like health checks and health action plans. This approach ensured free exchange of information, allowing patients to express their needs while understanding healthcare professionals' perspectives, gradually increasing engagement and accessibility to GPs. 
 
Our Objectives 
 
Listen and Learn: Understand the unique experiences and perspectives of individuals with learning disabilities, providing the right support and environment to find solutions together. 
 
Increase Uptake of Learning Disability Annual Health Checks: By understanding barriers and tailoring solutions based on participant feedback, we aim to improve the quality and uptake of these crucial health checks. 
 
Plan, Do, Study, Act (PDSA) Cycles 
 
We utilise the PDSA cycle to ensure continuous improvement and responsiveness to our patients' needs: 
 
Listening to Patients: We conduct sessions in safe environments, starting at Sport for Confidence where participants feel relaxed. Informal discussions over lunch or coffee have proven effective in gathering honest feedback. 
 
Ensuring Accessibility: We adjust the format and setting of our sessions to make them more accessible, using easy-read materials and creating themed discussions around important topics like annual health checks. 
 
Identifying Personalised Solutions: By truly listening, we identify personalised solutions that address the specific needs and barriers faced by individuals with learning disabilities. 
 
Implementing and Measuring Change: We continuously discuss outcomes with GPs to make necessary adjustments, ensuring the changes are effective and sustainable. 
 
Outcomes and Impact 
 
The "Our Voice Matters" group has led to several positive outcomes: 
 
Enhanced Communication: Direct feedback from participants has improved communication with GPs, leading to better understanding and personalised adaptations. 
 
Increased Engagement: More individuals who previously did not access services are now engaged and participating in their healthcare, thanks to the supportive and inclusive environment we have created. 
 
Conclusion 
 
By centring the voices of people with learning disabilities through the "Our Voice Matters" group, we are uncovering their unique life experiences and working together with primary care to increase accessibility and reduce health inequities. Our reciprocal learning approach ensures that participants lead the way, providing valuable insights that drive meaningful change. 
 
For more information and to get involved in our initiatives, please contact us kimberley@sportforconfidence.com and aimee@sportforconfidence.com 
 
 
 
References 
 
Atkinson, D., Boulter, P., Hebron, C., Moulster, G., Giraud-Saunders, A., Turner, S. (2013). The Health Equalities Framework 
 
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Executive summary 
 
 
NHS. (2019). Long Term Plan 
 
 
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