Introduction and rationale

Context and literature review

There is limited understanding worldwide of how cancer affects prison populations. It is well known that people in prison frequently have multiple and complicated health problems, often with worse outcomes than those residing in the community.1,2 However, so far attention has focused on communicable diseases, with little being known about the diagnosis and treatment of non-communicable diseases, which are currently thought to be neglected.3 Studies do reveal that people in prison are diagnosed with cancer,4–6 and that there is growing awareness of the importance of offering cancer screening to people in prisons.7,8 Yet, little is known about the process by which people in prison are diagnosed and treated for cancer, how they experience their health care and how the cost of their care compares with that of care for people in the general population.

His Majesty’s Prison and Probation Service (HMPPS) is responsible for prisons in England and Wales, and this prison population has doubled in size since 1990, remaining steady at around 85,000 persons over the past decade.9 It can be anticipated that within this growing and ageing prison population more and more people will experience a cancer diagnosis. Currently, the health care provided in prisons is commissioned and funded by NHS England and includes services provided by both the NHS and private contractors. Prison Ombudsmen Reports have already highlighted the lack of care systems and planning for the management of non-communicable diseases that will affect this ageing population.10 It is therefore important to understand how cancer is currently detected in prisons, and how diagnosis, treatment, follow-up care, outcomes and costs compare with those of the general population and may need to be improved for those residing in English prisons.

This is, to our knowledge, the first study to examine the entire population of cancer patients within the English prison population, patients’ experiences of cancer care and how professionals caring for people in prison with cancer view their role in the patient’s cancer journey. Our initial scoping review identified that no studies have previously examined the experiences of people with cancer in prison. Studies investigating cancer in the prison population are predominantly quantitative accounts, such as retrospective cohort studies,4,6,11 studies on screening7,8,12–15 and studies on health literacy.16 Most studies were conducted in the USA, with the cancer most often researched being cervical cancer. No qualitative studies were identified that aimed to understand the impact of cancer on people in prison.

Studies of people’s experiences of health care in prison have shown tensions around identities of being ‘a prisoner’, ‘a patient’ or even ‘a person’.17 While there is a move towards ‘health-promoting prisons’, it has been suggested that prisons have been deliberately designed to limit choice, therefore hindering the decision-making of people with health problems in prison.18

Previous studies of health care in prison have shown that prison officers can find it difficult to adopt a caring role,19 and often there is a tension between care and custody in secure environments.20–22 Health professionals both inside and outside prison need to work with the constraints put in place to mitigate the ‘security risk’ posed by patients who reside in prison. One recent interview study found that security often over-rode heath care needs, with patients reporting public humiliation and fear, difficulty and delayed access and reduced autonomy when they attended NHS hospitals.23 Guidance proposes that people in prison are entitled to the ‘equivalence of care’ received by those residing in the community.24,25 In 2018 the Royal College of General Practitioners defined equivalence of care for those in secure environments as follows:

‘Equivalence’ is the principle by which the statutory, strategic and ethical objectives are met by the health and justice organisations (with responsibility for commissioning and delivering services within a secure setting) with the aim of ensuring that people detained in secure environments are afforded provision of, or access to, appropriate services or treatment (based on assessed need and in line with current national or evidence-based guidelines) and that this is considered to be at least consistent in range and quality (availability, accessibility and acceptability) with that available to the wider community in order to achieve equitable health outcomes.

In summary, it is known that providing health care in prison is complex and that cancer care is complicated. This study therefore explores what happens when these two issues intersect for people residing in English prisons and sets out the barriers to and facilitators of good cancer care for these patients.

Research objectives

These were approached in three phases.

• Phase 1: describe the burden of cancer within English prisons by examining those aspects of its epidemiology and potential cost of direct relevance to commissioning NHS cancer care services, including –
  1. Comparative national trends (1998–2017) for cancer incidence in young people and adults aged > 18 years serving a prison sentence with the English general population.
  2. Comparative disease stage at diagnosis, pathways to diagnosis and treatment, treatments received, days spent in hospital, 1- and 5-year survival rates and cause of death for patients in prison with the most common cancers compared with other English residents with these cancers.
  3. Estimates of the prevalence of cancer among the prison population including all cancers diagnosed in patients during a prison sentence and pre-existing cancers requiring further treatment or care, including follow-up, in prison.
  4. Comparative cost (burden) of cancer in prisons and to (1) the cost of care in the community and (2) the cost of alternative pathways of cancer care in prison.
• Phase 2: describe experiences of diagnosis, treatment, care and support from the perspectives of patients in prison and prison staff and clinicians by presenting –
  1. Qualitative analyses of experiences described in individual interviews of people diagnosed or receiving treatment and support during a custodial sentence and of staff and clinicians caring for patients in prison.
  2. Comparative analyses of National Cancer Patient Experience Survey (NCPES) results (2012–8) for patients in prison with those reported for all English cancer patients and a qualitative analysis of the additional survey comments of people in prison to identify aspects of care that require further investigation.
• Phase 3: develop priorities and recommendations to improve quality of cancer care in prisons, care of prisoner-patients in hospital and the policy underpinning the commissioning of cancer services, including –
  1. Develop scenarios from data generated in phases 1 and 2 above to present in workshops with key patient and clinician stakeholders to map experience and the delivery of cancer care against expected standards.
  2. Present scenarios to an expert panel to develop priorities and recommendations for practice, policy and future research.
  3. Consult with participants to refine the recommendations and identify areas in the care pathway for interventions.