Title: How is cancer care best provided to patients in English prisons? Assessing the disease burden in the prison population, experiences of diagnosis,treatment and support, and of receiving and providing cancer care
Funder: Department of Health and Social Care

Abstract: More than 200,000 people are imprisoned each year in England and Wales and these individuals have significant health needs. To date prison health research has focused on mental health needs including substance use and infectious diseases. Research on non-communicable diseases is neglected despite evidence that people in prison adopt health behaviours that increase their risk of these diseases and that this population is ageing rapidly.There is a paucity of cancer research and recent Ombudsman reports have highlighted suboptimal service provision.The purpose of this mixed methods study is to assess the burden and cost of cancer in English prisons, equity of access to care, experiences of care, identify examples of best practice and aspects of care that can be improved and develop priorities and recommendations to inform and improve local services and English prison cancer care policy. We will conduct a sequential explanatory study comprising a quantitative epidemiological and health economic analyses of cancer in English prisons and a qualitative study to understand the experience of diagnosis, treatment and care from the perspectives of patients, clinicians and prison staff. Using national cancer registry and Hospital Episode Data for prison postcodes, we will examine comparative national trends (1997-2016) for cancer incidence in those aged over 16 serving a prison sentence compared with the English general population and also disease stage at diagnosis, treatment received, days spent in hospital, survival rates and cause of death. We will estimate the prevalence of cancer in the prison population, the comparative cost of cancer care and of alternative care pathways. We will describe experiences of diagnosis, treatment and care from the perspectives of patients and professionals using primarily qualitative methods but also comparing 2010-2016 National Cancer Patient Experience Survey results for patients in prison with those reported for all English cancer patients. This survey includes free text qualitative comments which we will analyse for information on aspects of care that require further exploration at in-depth interviews with 15-20 diagnosed or treated patients. We will interview 30 custodial and clinical professionals working in prisons or in the NHS to identify barriers to care and support and examples of good practice. Interviews will be recorded, transcribed verbatim and analysed using framework analysis. To ensure our findings inform practice and policy,we will actively involve patient, charity, NHS, Ministry of Justice and public health stakeholders throughout the study. Using workshops and panels to consider the implications we will derive and publish priorities and recommendations for national prison policy,commissioning and practice for cancer and other long-term conditions.We will disseminate the research findings and recommendations widely using academic and practitioner conferences, networks and publications,specific policy briefings,public engagement events,social media and a film. We anticipate the findings will impact on the provision of cancer care in secure environments including prison, by highlighting gaps in care, and providing new information enabling policy makers, local commissioners and providers of cancer care to develop more appropriate and effective cancer services. Ultimately the findings will have a positive impact on the care experience of patients with cancer and long term-conditions in prison.

Lay abstract: There is increasing public and policy interest in how prison healthcare can be better organised to detect and treat illness effectively and help patients improve their health as part of rehabilitation. Current UK research on the health of people in prison has concentrated on the detection and treatment of mental health problems, infectious diseases and smoking cessation.Little work has focussed on non-communicable diseases such as cancer that are increasingly affecting ageing populations.Cancer is common in the general population but accurate information on its diagnosis in people in prison and their experiences of care is sparse. Until recently no method existed for routinely identifying the number of patients with cancer from prison medical records. In an earlier feasibility study we used the postcodes of 7 London prisons to identify diagnoses from cancer registry records from 1986-2005.We found 158 people diagnosed during the study period: an average of 31 per 5 year period.The most common cancers were early stage cervical cancer in women and lung cancer in men.This study excluded young offender institutions and therefore cancers younger people are more likely to suffer from, the results represent only a fraction of those diagnosed in the 150 English prisons,and we did not have any detailed information about care, treatment, survival or patients’ experiences of care. Since this study’s publication, clinicians and the independent prison ombudsman continue to raise concerns about prisoners’ differing experiences of cancer care. The principle that people in prison receive the equivalent standard of care as they would in the community should underpin prison health service provision, but we do not know whether this exists for cancer care. Much more accurate information of a similar quality to that routinely available for other cancer patients is needed to determine accurately how cancer treatment and care in prison compare to accepted standards. This has the potential to change policies and practices and to improve co-ordination between prisons and NHS cancer services. The purpose of the study is to assess equity and access to care, inform cancer and prison healthcare policy and develop priorities for improving models and pathways of care for the prison population. We will identify for the first time the number, types and stage of cancers diagnosed in English patients within prisons, describe the process of diagnosis and treatment,patients’ experiences of receiving care and the experiences of professionals delivering it.This study is a new collaboration between user representatives with experience of cancer diagnosed in prison, clinicians in the NHS and prisons, academics, and professionals working at a strategic level in the prison sector, NHS England and in Public Health England.We will bring together and analyse existing data on cancer outcomes and patients’ experiences, use these to test assessments of the cost of cancer to the NHS and Justice System, and collect new interview data to explore experiences of care and identify key areas for improvement. We will hold national stakeholder workshop and panel meetings to determine the implications of the findings and make recommendations for practice and cancer and prison health policy.We will publish our findings, disseminate them through the Ministry of Justice and NHS, at national and international conferences, and publicise them in the media, by film and at public engagement events.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS