King's College London

A study led by King’s College London, University of Surrey and University College London, and funded by the National Institute for Health and Care Research (NIHR), shows that patients with cancer face several barriers to diagnosis in prison and once diagnosed, they receive significantly less treatment and lower planned care costs, and report worse experiences of care.

Researchers analysed cancer data from National Disease Registration Service, which is part of NHS England, and conducted a series of interviews with cancer patients in prisons, as well as with prison and healthcare professionals.

They found that compared with cancer patients in the general population, patients in prison are 28% less likely to undergo curative treatment, particularly surgery to remove tumours, and have a small but significantly increased risk of death (9%) – half of which was explained by treatment differences.

Prisoners with cancer also have fewer but slightly longer emergency hospital admissions than the general population, and the cost of NHS hospital care is lower in the first six months due to fewer outpatient attendances and planned inpatient stays. However, once emergency care and security escort costs is added their overall hospital care costs are higher.

The study, presented in three collaborative papers published today by The Lancet Oncology and eClinical Medicine, highlights the need to improve cancer care for people in prisons to ensure it is equivalent to that received by the general population.

"Unfortunately, these factors can mean the route to diagnosis for people in prison is different to that of the general population, and they may not always receive the same level of treatment and support," said Dr Davies.

"People in prison with cancer have so far been a hidden and under-researched population. They should not be impacted by such health inequalities and should receive the same standard of care as they would in the community.

"We would like to see much better use of existing data within the NHS, Prisons and Ministry of Justice to track and reduce these differences and better co-ordination of the care pathway between these organisations to improve care."

The study shows that while people in prison follow similar diagnostic pathways to those outside, they experience several barriers including, lower health literacy (the ability to obtain and understand information needed to make health decisions), a complex process for booking general practitioner appointments, and communication issues between both prison staff and with NHS clinicians involved in cancer care.

Prison healthcare professionals, meanwhile, say that prior to diagnosis it can be difficult to distinguish between people with genuine healthcare concerns and those trying to access drugs.

Patients in prison are also at risk of their diagnostic appointments being cancelled or replaced by others, and of missing appointments or being late when transport to hospital does not show up. Staff shortages and emergency situations within prisons can also result in missed appointments, if escort officers are asked to cover other jobs within the prison.

The use of handcuffs is highlighted as another barrier to accessing care and a reason for patients to refuse a hospital appointment, while the presence of prison officers at appointments can mean some patients are reluctant to ask certain medical questions or raise concerns. This is the first study to highlight that healthcare professionals and prison officers are also discomforted by this practice.

Once diagnosed, many patients say they feel unable to follow the advice of oncology professionals for managing and reporting any side effects, especially as they cannot communicate directly with their consultants from prison.

Oncology services also frequently advise patients to bring a family member or friend to appointments to support them psychologically and help with information gathering and retention. Yet most of those diagnosed in prison attend appointments without any family support and there is little interaction between their family and the oncology team.

"Our findings show that patients experience a number of barriers during diagnosis and similarly, once treatment started, they struggled to follow the advice of oncology professionals for reporting and managing any side effects," said Professor Armes.

"Instead, they were reliant on prison officers and prison health professionals to respond appropriately, which undoubtedly impacts on their overall physical and emotional wellbeing. With a growing and ageing prison population there is an increasing need for patients with cancer within the prison system to access equivalent care to those in the community."

The study was coproduced by peer researchers with lived experience of the criminal justice system, supported by Revolving Doors – a charity dedicated to improving services for people in contact with the criminal justice system.