1. Equality of access to regional NHS services Lindsey Cook Claire French Alan Parsons Tony Rollo Trevor Fernandes

2. Why did we choose this topic? We (the EoE citizens senate) have a voice, the opportunity and the capacity to promote equality and highlight regional inequalities. Given our membership of a regional wide representative group we are probably best placed to highlight these issues.

3. Equality of access to regional NHS services Variations in rates of diagnosis, treatment and outcomes for the five biggest killers (cancer, stroke, heart disease, lung and liver disease) Variations in groups of people have accessing health (homeless, some with poor language, cultural differences, travellers, people who live in deprived areas, or rural areas). Inequalities in both health outcomes and service experience. Our thoughts on what equality of access to regional NHS services means:

4. Which area/s for equality of access could or should we focus on? Potential focus areas Late diagnosis of the big killer diseases in disadvantaged communities Early treatment Targeted approaches to case finding in hypertension, COPD, lung cancer, cardiovascular risk and harmful drinking Improving access to health care for vulnerable populations. Involving people and communities in designing services to meet their health and care needs Communication and accessing healthcare without difficulty

5. Recommendations of potential deliverables? NHS to incentivise and prioritise suggested improvements in care Stakeholder engagement Discuss and present the final recommendations, solutions and suggestions. Build a document showing where people/areas are having problems with accessing healthcare Current state survey Analysis of what needs to be done in each area and for different groups to improve their access

6. Work Plan Equality of access to regional epilepsy NHS services

7. Objective Highlight equality of access to regional NHS epilepsy services from the patient perspective, addressing Variations in rates of diagnosis, treatment, experience and outcomes Variations in groups of people with epilepsy accessing health Inequalities in both health outcomes and service experience for people with epilepsy

8. Output A document that highlights equality of access to regional epilepsy services and provides potential solutions to current issues based on current best practice and patient experience. Document endorsed by the NHS, Patient organisations and third sector organisations Adoption via the CCGs

9. 4-point outline of real patient engagement - Lord Victor Adebowale 1. Any engagement must involve some transfer of power 2. There must be a shared understanding of the outcome 3. There must be a design that you can understand 4. You have to be listened to (you are the judge of this) Over arching principles to adopt

10. Scope - Equality of access to regional epilepsy NHS services In Scope Variations in access, diagnosis, treatment, transition, experience and outcomes All communities (including homeless, care homes, some with poor language, cultural differences, travellers, people who live in deprived areas, or rural areas) All ages Patient perspective Out of Scope Nothing clinical e.g. medication Study on the condition Out of the regional geographical area

11. Alignment to strategic clinical network(SCN) priorities:

12. Understand regional variation in epilepsy outcomes Data analysis of the region to understand variation in outcomes and population prevalence Data sources to include but not limited to - QOF, HSCIC, HES etc. Understand current epilepsy guidelines and evidence NICE guidance on epilepsy Available standards e.g. quality standards Understand currently available epilepsy services across the region Primary care (CCGs, GPs) Secondary care (Addenbrookes, Kings Lynn, Bury) Regional epilepsy patient groups Local Authority (H&WB) Third sector HealthWatch SCN Understand the patient experience Regional survey of epilepsy patients to understand what is important to them from the patient perspective Work plan from now till September 2014

13. Actions: 2 nd July 2014 ActionWhoTimeline Send SCN information/data currently gathered on epilepsy ClaireASAP Find and compile regional data for epilepsy services AllSept Compile a list of epilepsy evidence sources AllSept Compile a list of epilepsy services across the region AllSept Develop a short list of questions that could be used with patients to understand there experience AllSept

15. Appendix

16. Data sets http://www.local.gov.uk/health-and-wellbeing-boards/- /journal_content/56/10180/6111055/ARTICLE http://www.local.gov.uk/health-and-wellbeing-boards/- /journal_content/56/10180/6111055/ARTICLE Epilepsy not an area identified on the Health and wellbeing board area plans

17. QOF