Some text in this chapter has been reproduced with permission from Armes et al.44 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.
Qualitative results
We conducted 55 semistructured interviews with 24 patients from 6 prisons, 6 custodial staff, 16 prison healthcare staff and 9 oncology specialists. Patients were recruited from six prisons from across England. We aimed to recruit more people from 10 prisons in total; however, recruitment was suspended in March 2020 due to the COVID-19 pandemic. Table 7 shows the personal and clinical characteristics of patient participants and Table 8 shows those of professionals. As intended, most participants were men, and the most common diagnosis was prostate cancer in men and breast cancer in women. There was significant variability in place of diagnosis, place of treatment and treatment type. Thus, while 16 patients/participants were diagnosed and treated in prison, others (n = 6) were diagnosed and treated in the community and a small proportion (n = 2) were diagnosed in the community but treated while in prison.
| n | |
|---|---|
| Age bands (years) | |
| 20–39 | 2 |
| 40–59 | 9 |
| 60–79 | 10 |
| ≥ 80 | 3 |
| Cancer diagnosis | |
| Breast | 3 |
| Gastrointestinal | 1 |
| Haematological | 5 |
| Head and neck | 4 |
| Lung | 2 |
| Skin | 1 |
| Urological | 8 |
| Place of diagnosis | |
| Community | 7 |
| Prison | 17 |
| Treatment received | |
| Surgery | 3 |
| Systemic anti-cancer therapy | 10 |
| Radiotherapy | 4 |
| Hormone therapy | 1 |
| None | 7 |
| Residence during treatment | |
| Community | 6 |
| Prison | 18 |
| Treatment status at time of interview | |
| On treatment | 6 |
| Follow-up | 14 |
| Palliative care | 1 |
| No treatment received | 3 |
| Job title | Setting | n |
|---|---|---|
| Consultant oncologist | Hospital | 2 |
| Surgeon | Hospital | 1 |
| Clinical nurse specialist | Hospital | 2 |
| Chemotherapy scheduler | Hospital | 1 |
| Radiographer | Hospital | 1 |
| GP | Prison | 5 |
| Prison officer | Prison | 4 |
| Specialist nurse | Prison | 3 |
| Head of health care | Prison | 3 |
| Clinical nurse | Prison | 4 |
| Social care | Prison | 1 |
| Custodial manager | Prison | 2 |
In reporting our results, we draw on all participant groups to highlight the particular complexities of cancer care when a patient resides in prison. Three core themes were developed inductively: (1) communication, (2) care and custody and (3) control and choice. For each theme and subtheme, we summarise the findings, which we support by quotations presented in Table 9. Figure 3 depicts the generic pathway to a cancer diagnosis,39 adapted to reflect the experiences of people in prison. This pathway starts with a person experiencing symptoms, and in prison they put in an application (‘app’) to get an appointment with a GP and potentially have diagnostic tests (blood tests). If cancer is suspected, they are referred to an external hospital for further diagnostic tests, receive a diagnosis and are subsequently treated for cancer. Figure 3 also summarises the enablers and barriers at each point in the pathway, which we discuss in more detail below in relation to our themes.
| Patients | Oncology specialist | Custodial staff | Prison health care |
|---|---|---|---|
| Communication | |||
| Between patients and GPs | |||
| Getting a referralYou’ve got to write out paper apps to see a doctor. That can take time, so you’ve got all that, playing up there, thinking, ‘Oh God, I need to get this sorted out straight away.’ But you can’t because it’s out of your hands; there’s nothing you can do until you get that appointment with the doctorMan, 50s, haem cancerBut if I ever have something I’m not too sure about, I’ll just write, ‘I’ve got a pain here, but due to my [cancer] history …’ and they’re going to need to look at that, you do get looked at a lot quickerMan, 80s, multiple cancersEvery day I was telling them, and they just kept telling me that they’d got booked appointments. Then they [healthcare] told me ‘Oh, you’ve got a cold, it’s a gland,’ and then it wasn’t a gland, it was a thyroid. ‘We’re booking him in to have it operated on, it’s just your thyroid.’ But it turns out it wasn’t a thyroid, it was cancerMan, 20s, haem cancerIt took around 5 months for the doctor to send me to hospital to get diagnosed. I’d never been ill up until this really, like normal illness and stuff but nothing serious. And I was going to the doctor a lot with just being extremely tiredMan, 20s, haem cancerPost-prison moveI was first diagnosed when I was in [different prison], with all the blood tests they do when you go into prison. And then I was referred to [local hospital] and seen a consultant there, and I was just diagnosed with CLLMan, 50s, haem cancer | Post-prison moveWe are quite often asked to see people who have been transferred to a prison that is local to us who are not a local resident. They might be in one prison, then moved to a different prison and there is a complete lack of continuity of care (…) We were the third specialist bladder cancer team that were meeting this patient within 6 monthsSurgeon | Getting a referralIt could be a patient who self-presents, who puts an app in, ‘I’ve found a lump’, otherwise we wouldn’t know, and that gets the ball rolling with the initial investigations, scans. Or it could be an incidental finding, so they’ve come for something else but then through either doing blood sampling or a thorough examination they’ve found something elseLead nurseMalingeringThe other bit that happens is malingering. Malingering happens; people tell you they are bleeding, say bleeding in the urine and bleeding in the rectum and things like that, and then you find out that the episode happened to be the day before their court caseGPMental health and substance abuseTo be honest, a minority of them are people who have got physical health diseases. The majority of them is medication review, mental health review, but the most difficult or challenging consultations are those around substance misuse and the issuing of prescriptions which are potentially abusable within the prison serviceGPI mean, as much you build up relationships with prisoners because you see the same ones in and out quite a lot, it’s not the same thing. Unfortunately, a lot of prisoners are not interested in their health, they are interested in other things. And the problem is that by the time they are interested in their health, they have got serious problems and an awful lot of time and money in prisons is dedicated to their substance misuse problems and their mental health problemsGP | |
| Between patients and the oncology team | |||
| I tried to get in touch with some organisations, but that was so difficult because I think I was the first person. Like Macmillan. By the time | All patients are given a phone number to ring if they are in that situation [of developing a fever or infection]. | ||
| they’d allowed me to have the freephone number and an extended amount of time on the telephone so that you can wait to get through to all the right channels, then I was actually over all the treatmentWoman 60s, breast cancer | That is clearly not straightforward if you are on your own in prisonOncologistThe problem was more that once we finished the consultation, and then if we had to follow it up with a phone call, how we are doing, that was not possibleMedical oncologist | ||
| Between professional groups | |||
| it is just really hard communicating when the prison healthcare system seems pretty thin on the ground and stretched. It’s difficult to get hold of people to discuss and to try and make a planClinical oncologistit’s a bit more of a logistics one just to try to keep on top of the communication with the case workers at the prison, to make sure they’re aware of our rules and we’re aware of their rules, and they’re aware of when the patient needs to attend and what they’re coming forChemotherapy schedulerA lot of the discussions we have with the prison is, ‘What are you able to deliver?’ The problem is he has to be in a prison because he is in detention, but then what is the situation when they can’t deliver? Does he end up staying in hospital, which also isn’t the best place? With this particular case, that was some of the challenges Specialist registrarI think his contact with us and his contact as an inpatient when things were not as good was probably prolonged because of where he was going to have to go back to when he was discharged from hospitalSpecialist registrar | Medical confidentialityI believe you do get a bit of a brick wall sometimes [from prison healthcare] and you’re not getting the full picture. Or things are delayed from the outside hospital with information, and I get to hear the information from the prisoner before it comes from the hospital to the prisonPrison officerBut we wouldn’t have been sat down and been told about the diagnosis with them, it would just filter through to us, and then we would start putting things into place for themPrison officerI’ve almost got to go and get a piece of paper signed each time for them to information share. Sometimes, if we had the full picture at the beginning, it would help me with my position, especially if there is going to be that risk of that person falling into that palliative care. If I’m prepared for it, then I’m prepared to be able to support them in a better wayPrison officer | Medical confidentialityI think sometimes the nurses in the hospital can be quite difficult to communicate with us. They’ve very reluctant to communicate with us, even when we’ve had to set passwords up and things like that for them to communicate with us, they will only give us the bare information, the minimumNurseSome of the NHS are really funny about it, they won’t send stuff to [prison healthcare e-mail] but if you’ve got an NHS [e-mail], they’ll e-mail you to an NHSSenior staff nurseI just send a letter to the officers on the wing to say, ‘Look, he’s on this treatment, these are the side effects. Please be aware. These are the phone numbers to call should he have anything.’ So, they keep that in their office, so they’ve got all thatClinical nurse specialistA lot of the time they [patients] won’t have anybody else with them. So if they’re being bombarded with information, we [healthcare] don’t know what information has been given because obviously the prison officers don’t come back and tell usClinical nurse practitioner | |
| Control and choice | |||
| Preparation for appointments | |||
| No, I know when I’m going. I’m not meant to, do you know what I mean? It’s every 21 days they have to do itMan 20s, head and neck cancerI didn’t know I was going. I hadn’t written my questions down. I keep asking odd questions [in the hospital]Man, 80s, head and neck cancerQuite simply, my operation is at 7 : 30, I have to be in [hospital], so I’ve got to leave here at 6:30. They require me to have washed my hair before I go. It’s very difficult for prisoners to wash their hair in the prison. I need to do it the night before, but will I be told that I’m going to [hospital] the following morning? Probably notMan, 70s, multiple cancers | I don’t know this for 100 per cent sure, but I think when booking appointments the bookings team liaise with the prison. They don’t tell the prisoner, to try and de-risk anything from that point of viewSpecialist registrarInformation-giving to patientsI think information-giving is really difficult because you always feel slightly constrained, you are saying to them, ‘We will give you chemotherapy every 3 weeks.’ And you are thinking, ‘Can I say that?’ Because they are not supposed to know when they are comingClinical nurse | They are not allowed to know when they are going, but they’ll have an idea when they’re going. We’ll take the gentleman for his chemotherapy appointment, he’ll have his chemo, he’ll come away. The hospital will then write to the prison with the new date for the next session. And he won’t know when he’s having the next onePrison officer | Well, usually patients can’t know when they’re going out to hospital because there could be a security breach. So there’s the element of surprise when they may or may not know they’re going and that morning they get up and have to go to hospital. If they need to be nil by mouth they may know the night before, but that’s rareSenior healthcare manager |
| Treatment | |||
| ChemotherapyI have three lots of chemo; every 21 days I have to go and have it done. It’s only once every 21 days, but I’m on three different types. I don’t know what they’re calledMan 20s, head and neck cancerRadiotherapyWell, it is cancer because I am having radiotherapy, possibly some time this month. I don’t know when because they don’t tell you.Man, 80s, lung cancerHormone therapyI’m on tablets now. They’ve not said anything about any further treatment or whatever, or anything. I don’t think they tell you if they’ve received anything from the specialist; they only tell you what they want you to knowMan 70s, urological cancerSurgeryAll I had was operations, operations, operationsMan 50s, head and neck cancer | Equivalent treatment plansThe patient, depending on their diagnosis, stage, things like that, would be offered the best treatment for them. Any cancer patient, regardless of whether they are a prisoner or not, will be discussed in a multidisciplinary team meeting – a group of professionals who then come up with what they think is the best treatment option for that patient RadiographerCancer is very much a standardised treatment based on evidence so we try to do all we can. I think in terms of his treatment, it wasn’t any different to what it would have beenSpecialist registrar | Communicating about treatmentSo, we’ve got a guy who’s on chemotherapy tablets in the prison at the moment, so I just send a letter to the officers on the wing to say, ‘Look, he’s on this treatment, these are the side effects. Please be aware. These are the phone numbers to call should he have anything.’ So, they keep that in their office so they’ve got all thatClinical nurse specialistSo usually if they are going to start active treatments, we liaise with wherever they’re going to if they were going to have a course of chemotherapy, we’ll get all those dates prior to it and then admin will clear them all with security, because they’re only allowed so many patients out a day, we triage that list so that patient then becomes priority. So if there’s other people on the list that day, they’ll be taken off and moved elsewhere. So we plan ahead so it doesn’t affect their chemotherapy or radiotherapy or whatever treatment they’re havingLead nurse | |
| Managing treatment side effects | |||
| I have suffered very severe side effects from the radiotherapy. This is not necessarily relevant to having that treatment from prison, but it’s difficult to have side effect management in prison. All night sweating you can cope with, but anal bleeding is not easy to handle, and I have that every dayMan, 70s, multiple cancersObviously, they’ve got to kill my immune system and then try and rebuild it. In here, you’re just open to infections. Plus, staff come in with coughs and colds, and it’s just a dirty environmentMan, 20s, haem cancerI’ve not had any side effects at all. But no, some lads on the wing do have side effects, and sometimes they’ll go, ‘I’m not going to air today, I don’t feel too well,’ or this sort of stuffMan, 80s, multiple cancers | He had two episodes of febrile neutropenia and actually he felt that his first one was ignored (…) So actually getting him to hospital as an emergency was probably quite difficult and it must have been difficult for them [the prison] to facilitateClinical nurse specialistI don’t think that [being in prison] would necessarily change my approach to explaining side effects to them, because my assumption would be that, if they have a prison doctor and the prison doctor is completely aware of a patient and the management plan that they’re undergoingClinical oncologistYou have to explain everything because he still needs to be treated as a normal patient. If you have any new symptoms, if you have any new worries, if you have any new concerns, you ring the hotline. Then again it is back on the prison. ‘He has rung and we want to see him. You have got to arrange for him to come up.’ If a person rang me from [place], say, and they were ill, I would tell them to go to A&ESpecialist registrar | I believe if someone was given anything like that [chemotherapy], healthcare would generally come and give us some sort of handover, saying, ‘This person’s having this therapy, and these are going to be the side effects’Prison officerOne [patient] had a brain tumour (…) he was going up to hospital either every day or every couple of days for treatment (…). But it was the actual prisoner who lived with him who came and told me if he was struggling. I don’t think staff are fully aware of what to look out forPrison officer | We’ve had other patients where we’ve been managing their side effects from their cancer treatment, or explaining their diagnosis to them because they don’t really understand it because they don’t take it in when it’s told to them in hospital, or because they can’t read very well – that kind of thingClinical nurse specialistThere’s a protocol in place, around chemotherapy and around blood transfusions as well, with escalation plans in place if someone’s bloods are indicating a neutropenia or something like that, what to do. That’s shared with both prison staff and with the clinical staff so they know exactly what the contingency plan is, if XYZ happensSenior healthcare manager |
| Managing emotions | |||
| I’ll have the chemo, and as the days go on, you feel bad for the first few days, then you start feeling a bit better again. But it’s your emotions; it plays with your head, badly. I just have to keep telling myself I’m going to get better, but it does play with your emotions. I had it going last Monday, and then Monday night they didn’t give me my medication that they’re meant to give me, and I just flipped. I knew when I was doing it that I was just doing | |||
| it because I was kicking off for no reason, but I couldn’t control it; your head just goesMan, 20s, haem cancerI’ve been told that I’ve got a really aggressive cancer, and I’m not being given any time to process it. I’m a man, I want to go and cry in my cell on my own, just have a night where I try and get my head around everythingMan, 20s, haem cancerWhen you’re vulnerable or unwell, or mentally vulnerable, the officers will all decide, they’ll have a little sit down and a chat with you and work out things that they can do to help you, people you can see, and how many times they’d like to check on you so that you’re still alive. So, they did that, and I didn’t really need thatWoman, 60s, breast cancer | |||
| Care and custody | |||
| Getting to hospital | |||
| Missing appointmentsThe main thing I think that sometimes breaks down is getting people to the hospital when they need to be. That’s the only thing where mine went wrongMan, 60s, urological cancerMissing scansI’ve never missed a chemo appointment. The one [doctor] was really cross about was the scan. I was supposed to have had one before the last appointment and I haven’t and she said, ‘Why not?’ and I said, ‘I don’t know’. That’s like blaming the prisoner for not having a keyWoman, 40s, breast cancer | Missing appointmentsThey don’t turn up to an appointment and we end up trying to chase it up, phone the original prison, and they say ‘No, they’re not there.’ I’ve spent hours trying to track people down in the past, not being willing to tell me where somebody isClinical oncologistEscorts – arranging appointmentsIt still has been quite hard work, negotiating with the prison and actually getting him into appointments. I’ve gone to the trouble of trying to liaise with our X-ray department for him to have the ultrasound scan on the same day he comes to see me, to help the prison out so that he’s only [needed] one trip under escort outClinical oncologist | Missing appointmentsUnless something has gone catastrophically wrong, they will never miss their appointment. And obviously because we know they’re going off for chemo, we know how important that is. So no, they should never, in an ideal world, miss their appointmentsPrison officerHospital escortsIt’s about making sure that a diagnosis is reached quickly, and that’s about us communicating to the medical staff, the medical staff communicating to the relevant oncology department, making sure that we’ve got staff available to escortCustodial manager | Hospital escortsNow, the challenge with that is, the prison has capacity issues and resource issues about taking anybody out for any healthcare appointment. So, the prison currently allows three outside appointments in a day, which means that you are often the people who pick and choose who goes outPrison health care |
| HandcuffingIt’s a bit of a thing at the minute, because I’m 80 years old, when you go for the scan, they lock the door, nobody can go in anyway, but they still insist on being cuffedMan, 80s, multiple cancers[When going for] a scan they have to take your handcuffs off and put plastics on (…) They’re plastic handcuffs, and they haven’t got anything to open them with they have to use this prehistoric tool to open itMan, 50s, GI cancerI don’t get handcuffed when I go to the hospital. There is a list of a few of us that don’t; we just go down with two prison officersMan, 70s, urological cancer | HandcuffingBut yes, typically, they are handcuffed when we see them. Obviously if you need to examine the patient, often there is some arrangement to allow that. But it’s not idealClinical oncologistIt is so obvious when they [patients from prison] walk into the department handcuffed to two burly [prison officers] … Everyone looks then. How can we try and reduce some of the stigma attached to that?Radiographer | Handcuffing[I]f they are cuffed, we are sensitive to that and we don’t parade them round and bark orders at them in the hospital. We’re sensitive to their needs and the public needs, because we’re the face of the prison service when we’re out thereCustodial managerPublic safetyBut we’ve also got to be aware that these people are a risk to the public, so we’ve got our job to do there in protecting the public. And we try to just blend in as much as two prison officers and a prisoner handcuffed together can blend inPrison officer | HandcuffingThey obviously will go out in handcuffs with two officersSenior healthcare managerAnd I think 98% of our cancer patients are not cuffed when they go to their appointments either. I’ve got a list of 36 patients that are not cuffedClinical nurse specialist |
| Prison officers in consultations | |||
| Presence of prison officersThe chance to sit and talk to a specialist without somebody else in the room [would be great]. While they [the officers] might be sympathetic, it’s not their treatment. Because there are questions I would like to ask my consultant but I don’t feel comfortableWoman, 40s, breast cancerYou have to have an enema every time you have radiotherapy and having an enema with prison escorting officers is difficult. There were different escorting officers each timeMan, 70s, urological cancer | Presence of prison officersIt is always challenging, and you always ask permission from the patient [for the prison officers to be present]. I don’t understand the ins and outs of the law. I presume that whoever is in charge of bringing him has to be there.Specialist registrarShe [a patient] was a young woman who was really, really frightened about losing her fertility. So there was a lot of discussion about that and that was all done in the presence of strangersClinical nurse specialistIgnoring presence of prison officersWe try to blank it out [the presence of prison officers], so when you have a patient in front of you, whether you have a prison officer | Presence of prison officersI’ve also been on escorts where they’ve gone out for their treatment, their chemotherapy. And obviously you’re on a ward with other people who are suffering from cancer and having treatment and you’re there with a closeting chain sometimes. It’s not greatPrison officerTrying to absorb informationWe’ll go, we’ll try and absorb some of the information to him, just in case he misses something, so we can tell him ‘They said that and said this,’ just try and make it as comfortable as we can for them | |
| or whether they are handcuffed or not handcuffed, you try to just have an absolutely normal conversation as much as you possibly canMedical oncologist | Prison officerZoning out during consultationsSo obviously we know we’re hearing stuff that is for him. Me, personally, when stuff goes on between him and his doctor, I try not to listen unless the doctor will ask questions like, at the prison is this available to themCustodial manager | ||
FIGURE 3 Barriers to and enablers of care for people with cancer in prison. Images reproduced with permission: treatment – Nithinan Tatah from Noun Project (CC-BY); diagnosis – Amethyst Studoi from Noun Project (CC-BY): hospital appointment – Phoniaphat Thongsriphong from Noun Project (CC-BY); hospital referral – Nawiconm from Noun Project (CC-BY); appointment in prison – DinosoftLab from Noun Project (CC-BY); putting in an app – Arslan Shahid from Noun Project (CC-BY): symptoms – Noun Project (CC-BY). (Figure not reproduced here; see the original article.)
Getting a diagnosis
Cancer patients in prison are a diverse group, and we identified three different pathways to diagnosis.
- Pathway 1: people diagnosed and treated in the community who need follow-up care in prison (n = 6).
This group were diagnosed and treated prior to going to prison but required ongoing anticancer medication, monitoring and follow-up care.
- Pathway 2: people diagnosed in the community and treated in prison (n = 1).
One participant completed all diagnostic tests shortly before being sentenced but underwent treatment in prison, highlighting the blurring of boundaries and overlaps between prison and community settings.
- Pathway 3: people diagnosed and treated in prison (n = 17).
Pathway 3 included various ways of being diagnosed. Some people were diagnosed via the health check that occurs during the first-night intake (‘reception screening’), while others were diagnosed through national screening programmes offered in prison. Some participants were asymptomatic and were diagnosed secondary to other health interventions. By contrast, some, particularly younger participants with non-specific symptoms, experienced a prolonged route to diagnosis. Oncology professionals reported that being moved between prisons could delay diagnosis. This was corroborated by a man in his 50s who was diagnosed with leukaemia via reception screening but moved to another prison where staff were unaware of this diagnosis and repeated the diagnostic process.
Three core themes that were developed inductively – communication, care and custody, and control and choice – will now be outlined in more detail.
Communication
A major barrier in providing or receiving good care is communication. This includes communication between patients and clinicians and between professional groups.
Between patients and general practitioners: getting a referral
Typically, if a person experiences symptoms in prison, they ‘put in an app [application]’ to be seen by prison health care. This can be paper-based or electronic but is triaged by a prison health professional who decides which patients will see a prison GP, and how quickly. Only patients and prison healthcare interviewees spoke about the ‘app’ system. Using the ‘right’ language on an application was key; one person commented that he always wrote ‘due to my history with cancer …’ to ensure that he was seen promptly. Others reported putting in daily ‘apps’ for weeks or months before they received an appointment. Some not only filled out ‘apps’ for themselves but also helped fellow prisoners for whom literacy was a challenge. This system of ‘putting in apps’ is thus the first barrier that some people in prison needed to overcome to access health care.
‘Malingering’ and trust
The main difficulty in detecting cancer from a prison healthcare perspective was differentiating between people with physical healthcare problems and those with mental health and substance abuse issues. Prison doctors reported that the risk of ‘malingering’ was high. While patients reported the challenge of ‘not being believed’ by health professionals and custodial staff, this was not simply unwillingness on behalf of professionals but, instead, a complicated dynamic between understaffing and limited healthcare appointments, combined with a complex patient population and low cancer awareness. The implication is that people in prison may have to convince the prison GP that further investigations are warranted. In the study there were several patients in their 20s who struggled to get a diagnosis as they experienced vague symptoms and were labelled as ‘lazy’ or ‘attention seeking’.
The NCPES data corroborated these findings in that people with cancer diagnosed in prison were significantly less likely to report that ‘they saw their GP less than three times’ before being referred to hospital (OR 0.32, 95% CI 0.18 to 0.59) or that they were seen by a hospital doctor within 3 months (OR 0.33, 95% CI 0.19 to 0.59) (Table 10).
| Number | Question | Question heading | Preferred answer | OR | 95% CI | |
|---|---|---|---|---|---|---|
| 1 | Before you were told you needed to go to hospital about cancer, how many times did you see your GP (family doctor) about the health problem caused by cancer? | Pre-diagnosis GP visits | Saw GP no more than twice before referral to hospital | 0.31 | 0.16 to 0.57 | |
| 3 | How long was it from the time you first thought something might be wrong with you until you first saw a hospital doctor? | Time to secondary care | Seen in less than 3 months | 0.33 | 0.19 to 0.57 | |
| 11 | When you were first told that you had cancer, had you been told you could bring a family member or friend with you? | Family or friend on first visit | Yes | 0.14 | 0.07 to 0.27 | |
| 14 | When you were told you had cancer, were you given written information about the type of cancer you had? | Written information about cancer | Yes, and it was easy to understand | 0.66 | 0.37 to 1.17 | |
| 17 | Were the possible side effects of treatment(s) explained in a way you could understand? | Possible side effects of treatment explained | Yes, definitely | 0.98 | 0.56 to 1.72 | |
| 18 | Before you started your treatment, were you given written information about the side effects of treatment(s)? | Written information about side effects of treatment | Yes, and it was easy to understand | 0.35 | 0.14 to 0.88 | |
| 26 | Did hospital staff discuss with you or give you information about the impact cancer could have on your work life or education? | Information on impact on work or education | Yes | 0.51 | 0.24 to 1.10 | |
| 48 | Were you given enough privacy when discussing your condition or treatment? | Privacy | Yes, always | 0.20 | 0.09 to 0.42 | |
| 54 | Did hospital staff tell you who to contact if you were worried about your condition or treatment after you left hospital? | Contact information after leaving hospital | Yes | 0.10 | 0.04 to 0.25 | |
| 55 | Did the doctors or nurses give your family or someone close to you all the information they needed to help care for you at home? | Information on care passed on to someone close | Yes, definitely | 0.27 | 0.14 to 0.50 | |
| 63 | As far as you know, was your GP given enough information about your condition and the treatment you had at the hospital? | Enough information given to GP | Yes | 0.17 | 0.07 to 0.40 | |
| 64 | Do you think the GPs and nurses at your general practice did everything they could to support you while you were having cancer treatment? | GP support | Yes, definitely | 0.46 | 0.25 to 0.84 | |
Communication between patients and cancer professionals
Oncology specialists became involved only when a patient was referred to hospital, and this was the only time patients in prison could ask them questions about their cancer. Patients could not communicate directly with specialists from prison, as it was generally not possible to add the phone numbers to their approved numbers in a timely fashion. Thus, for patients in prison, preparing questions for these visits was crucial. Oncology professionals reported offering ‘the same’ kind of information regarding reporting side effects, despite acknowledging that people with cancer in prison may struggle to contact cancer services using the telephone hotline and that this may result in poorer side-effect management. It was generally accepted by patients that they had limited access to cancer specialists. Some tried to access information through Macmillan Cancer Support, a UK cancer charity. But just as patients could not easily add the number of their cancer specialists to the list of phone numbers they were permitted to call, it was equally difficult to contact charities. In some prisons, Macmillan professionals visited cancer patients regularly, but this service was based on available funding, and thus some patients and professionals reported how Macmillan ‘used to visit’.
These communication challenges were reflected in the NCPES findings (see Table 10). People diagnosed with cancer in prison were almost as likely as those in the general population to respond that the way the possible side effects of treatment(s) were explained was easy to understand (OR 0.90, 95% CI 0.51 to 1.61) and much less likely to report that written information was easy to understand (OR 0.22, 95% CI 0.09 to 0.56). Likewise, people diagnosed in prison were 90% less likely to report that they were told who to contact if they were worried about their condition or treatment after leaving the hospital (OR 0.10, 95% CI 0.04 to 0.23) (see Table 10).
Communication between professional groups
All three professional groups reported that communication with each other was difficult. Oncology specialists reported finding it hard to communicate with prison health care, while prison health care reported that oncology services were reluctant to share information with prison health care. The interviews with oncology professionals revealed that they found prisons mysterious places, and their narratives included many questions around what was available to patients in prison, and who to speak to. Prison officers reported being constrained by the notion of medical confidentiality, and this was highlighted by the fact that they were often not informed about a prisoner’s cancer diagnosis. When prison officers tried to acquire information, prison health care were reluctant to share information due to medical confidentiality constraints. Prison officers noted that people in prison might inform them about their diagnosis, but as ‘malingering’ was considered a big issue in prisons, prison officers often wanted to verify this information. The study revealed that patients were unaware of the ways hospitals and prisons communicated about their health care, but they were affected by miscommunication or non-communication between oncology specialists and the prison.
Responses to NCPES showed a similar finding, whereby people diagnosed with cancer in prison were far less likely to report that their GP was given enough information about their condition and the treatment received at the hospital (OR 0.15, 95% CI 0.06 to 0.36) than those diagnosed in the general population (see Table 10). Moreover, they were around half as likely to say that the GPs and nurses at their general practice did everything they could to provide support during cancer treatment (OR 0.46, 95% CI 0.26 to 0.83) (see Table 10). In addition, people diagnosed in prison were more likely to respond that their GP was not involved (p = 0.011, data not shown).
Control and choice
People in prison had limited control of and choice about decisions regarding their own health, and there were various structural barriers that hindered access to health care. While these barriers impact the everyday lives of people in prison the most, prison health care and custodial staff were also constrained by their working environment and the role divisions within prison. Oncology services, by contrast, aimed to empower patients to self-manage their illness, for example, through exercise and healthy eating, but the prison environment provided limited opportunities for doing this.
Preparing for appointments
Cancer treatments are generally given at regular intervals, with clear scheduling information given to patients. Because of security concerns, this information is not provided to people in prison who have cancer. Patients often deduced when their next appointment was likely to be, yet oncology professionals were discouraged by prison officers from openly discussing timeframes for treatment plans. This impacted the consultation with oncology specialists. It was important that people in prison were as prepared as possible to ask the right questions about side effects, treatment and follow-up care. If patients were not prepared, or forgot to ask questions, they missed their chance to ask any questions and had to wait until the next appointment.
Treatment
Oncology professionals reported that treatments for patients residing in prison should not differ from those for patients residing in the community. Yet patients in prison reported that they had less access to information about their specific cancer, and, as family and friends were typically absent from the diagnostic process, they made decisions about treatment on their own and on the spot. Some participants were diagnosed prior to entering prison and so their family were involved in the decision-making process. Typically, treatments such as radiotherapy and chemotherapy were provided only in hospital. Oral chemotherapy could be offered ‘in-house’, and a few participants in the study were ‘on tablets’ to treat their cancer.
Again, these findings are reflected in the NCPES results (see Table 10). People with cancer in prison were significantly less likely to report that they were told they could bring a family member or friend with them when they were first informed about their cancer (OR 0.17, 95% CI 0.09 to 0.32), and that family or someone close to them was given all the information they needed to help care for them at home (OR 0.49, 95% CI 0.25 to 0.98) (see Table 10). Further inspection of the data not included in the modelling for the latter question (data in Supplementary Table) revealed that far more people diagnosed in prison indicated that no family or friends were involved (p < 0.0001, data not shown).
Managing treatment side effects
It can be difficult to manage side effects in prison. Oncology specialists reported the challenge of getting patients to hospital if they experienced side effects that necessitated immediate medical attention. Furthermore, their accounts revealed that they were not sure who was responsible for monitoring patients in prison. Patients reported a range of experiences; some did not experience any symptoms, while others experienced severe and ongoing side effects. The physical prison environment was noted to be ‘dirty’, which was particularly concerning for immunosuppressed patients. Prison health professionals reported that there were specific protocols in place to manage side effects. As prisons had individual responses to managing cancer care, it was unclear whether these protocols were developed locally or nationally.
Managing emotions
Prisons are emotionally complicated places both for people in prison and for staff. Patients and prison officers reported that showing vulnerability was avoided in prison. A prison sentence is already emotionally challenging, and a cancer diagnosis adds to this. Yet, as one participant reported, ‘This is not a place to have a mental breakdown’. Patients in prison tried to save face and keep their emotions to themselves, for example, when they heard their prognosis and bad news in front of prison officers. One person was hospitalised at the time of diagnosis and received his diagnosis while under 24-hour surveillance. He reported longing to return to his cell so he could cope with this news on his own.
Care and custody
For both prisons and healthcare organisations safety is a top priority, but their focus differs; for health care the focus is the safe delivery of care, while for prisons the emphasis is on ensuring the safety of prisoners and protecting the public from them. Tensions that were identified between care and custody largely derived from these different foci for ensuring safety. Interviews with the professional groups showed that those working in the criminal justice system were not always sure whether their role was to provide care or custody. Prison officers found it particularly difficult to reflect on their role in the care of people in prison, despite, for example, being instrumental in getting people in prison to hospital appointments. Cancer patients in prison moved between the identity of ‘cancer patients’ and ‘prisoner’ both within the prison walls and during their out- and inpatient hospital appointments.
Getting to hospital
Transporting people from prison to hospital requires careful logistical planning. Each prison can convey a limited number of people (prisoners) to hospital appointments each day, based on the prison officers available for escort duty. Typically, two prison officers escort the patient and are only told on the day of duty. The study showed that cancer was considered urgent within prisons, and patients needing to attend treatment or appointments were prioritised over others. Before diagnosis, people in prison are at risk of their diagnostic appointments being cancelled or replaced by others. Patients also reported missing appointments or being late when transport did not show up. Staff shortages and emergency situations within prisons could also result in missed appointments if escort officers were asked to cover other jobs within the prison.
The tension between care and custody is made visible as people in prison are handcuffed to an escorting prison officer. Prisons, however, adopted individual strategies to manage the issue of handcuffing. One prison did not require patients aged > 65 years to be handcuffed if their security risk allowed it. In another, people with cancer were not handcuffed. This decision was based on the risk they posed to the public. For patients, not being cuffed helped minimise feelings of shame, as they looked less like a prisoner. The use of handcuffs was a barrier to accessing care and was a reason why patients refused a hospital appointment.
Presence of prison officers in medical consultations
Interview data highlighted that the tension between security and autonomy for patients, prison officers and health professionals was amplified by the presence of prison officers during medical consultations. Oncologists reported trying to ignore the prison officers, and prison officers reported various coping strategies during consultations, ranging from ‘trying to absorb some information’ to ‘zoning out’. Patients had diverging opinions about the presence of prison officers; some said they did not mind it, while others reported that they would not ask certain medical questions (e.g. about impact on fertility) or raise concerns in front of the officers. Reasons for this ranged from being embarrassed to being wary that officers might feedback personal information to others in the prison.
Likewise, results from NCPES showed that those diagnosed in prison were far less likely than those diagnosed in the general population to respond that they were always given enough privacy when discussing their condition or treatment (OR 0.20, 95% CI 0.10 to 0.41) (see Table 10).