Developing stakeholder policy recommendations

Some text in this chapter has been reproduced with permission from Pollitt et al.45 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 3.0) 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/3.0/. The text below includes minor additions and formatting changes to the original text.

The briefing pack for the Policy Lab participants presented the key results in graphical and written form, showing that patients in prison have significantly poorer cancer outcomes than the general population, controlling for age, sex and comorbidity, and that they report fewer positive experiences of care.

Factors underlying this situation were explained as including:

1. lack of awareness of symptoms and how to seek help
2. problems with accessing clinicians for diagnosis, problems accessing care, lower level of treatment (for a variety of reasons)
3. no or limited access to other support (e.g. online or phone)
4. limited access to or availability of after-care.

Improving this situation was explained as requiring a range of obstacles to be overcome, including:

1. a culture of control and incarceration which can clash with a culture of care
2. limited budgets
3. mental health and addiction issues tend to dominate when presenting with symptoms (e.g. suspicion that someone is seeking access to drugs)
4. the systems in place and the skills of staff tending to focus on mental health rather than physical symptoms
5. a lack of privacy (e.g. when receiving bad news, giving samples)
6. staff lacking the practical skills and experience needed to support patients
7. security and other prison policies acting to prevent patients finding support from others
8. prisons being ‘mysterious places’ for external teams to interact with.

Summary of proposed ‘top improvements’

The discussions at the Policy Lab identified four proposed ‘top improvements’ in terms of both how much impact these would have over the next 2–3 years and how possible they would be to implement:

1. communicating to clinical teams on how the prison system works (as part of efforts to join different parts of ‘the system’ to achieve a more integrated approach)
2. co-ordinating and promoting an effective approach to cancer screening that significantly increases take-up
3. having ‘health champions’ among prisoners to advise and support others
4. raising health literacy and awareness of symptoms in prison using different media, especially TV and video.

Two other, and related, possible improvements were also rated highly for impact, but some participants considered implementing these to be less feasible:

1. providing and using ‘in-cell’ technology (tablets, two-way phone, approved helpline support number) to enable prisoners to access support more readily in a timely way that respects privacy
2. using video consultations for outpatient and treatment-related interactions, which could also be extended to involve families and other members of personal support networks in the process of diagnosis and care.

Figure 4 shows the overall scoring from 16 Policy Lab participants across 12 different improvements that emerged from the discussions at the workshop.

FIGURE 4 Summary scores of Policy Lab participants based on impact and feasibility. (Figure not reproduced here; see the original article.)

The scoring of impact and feasibility across Policy Lab participants varied for some possible improvements more than others, reflecting the experience or evidence that each person was drawing on. It does mean that, for these improvements, some individuals gave much higher (and some much lower) than the average shows (Table 11).

The remainder of this document sets out the ideas that emerged from the Policy Lab under several themes:

• the need for a co-ordinated and standard approach
• the need for awareness and effective screening
• the need for effective diagnosis
• the need for a better experience of treatment
• the need for continuity of care.

It then concludes by listing a set of questions/options for further research.

The need for a co-ordinated and standard approach

The use of networks focused on improving care

It was strongly agreed that more interchange and ‘cross-talk’ is needed between groups who come into contact with people with cancer and are involved in the treatment of cancer patients within the prison system. This includes, but is not limited to, the prison officers and staff, local hospitals’ administrative teams, cancer treatment clinicians, voluntary support groups and family/personal support networks. This would help address some of the lack of mutual understanding and co-ordination issues that undermine the quality and experience of care. Better interorganisational collaboration would also improve mutual understanding that there are challenges across all groups involved and hopefully address these issues rather than ‘passing blame’.

While training programmes or clearer reporting lines might be actions to tackle the challenges in offering an integrated approach, it was felt that finding the willingness, capacity and/or funding to drive this could be hard. An alternative might be support for the establishment of informal networks of those with an interest in improving support to those in prison. This would address one question posed, namely ‘there are a lot of individuals with a lot of heart and a lot of care – how do we connect these people who make an effort to join things up?’

Many people specialise in this area, including nurses in prison interested in cancer and some in acute settings who understand the rules in relation to prison (e.g. prisoners not knowing when appointments are). Bringing these people together and supporting them to inform and equip their colleagues could be an efficient way of achieving a more co-ordinated approach.

Some of these networks could be established at a place or system level where the critical aim is to develop links between surgery, radiotherapy and oncology services and local prisons that help establish and maintain personal connections among those who are empowered/have the authority to make change. There is also scope for a network at a national level to develop best practice, spread learning and provide a steer to policy. This could bring together all relevant stakeholders, both practitioners and policy-makers, and would span multiple health disciplines (medical staff, surgical colleagues, nursing, mental health).

Consolidating best practice

Whereas prison systems are quite centralised, health care tends to be much more localised. Given these very different organisational approaches, it can be hard to bring together best practice in a way that leads to standardised improvement. To create equity across different prison settings (e.g. in terms of security level) and models of health care (e.g. presence of ‘prison hospital’ or not), it might help to consolidate the development of best practice to ensure that this works consistently across both the prison and the health systems. It might also help to consolidate some of the resources that can drive improvement at a regional level as this could support co-ordination at a place level.

Getting the ‘lived experience’ into decision-making

People with lived experience have valuable insights, and it is important that their voices are integrated into any process to improve these services in the future. It was agreed that the different data sources and evidence from the project had come together incredibly powerfully in the film (Cancer Cells). What had previously been heard anecdotally now appeared to be borne out by the detailed quantitative and qualitative data.

Empowering families and other members of a personal support network

It was agreed that both experiences and outcomes can be improved by enabling families and other members of personal support networks to be involved from the early stages of diagnosis throughout the care process. This helps with retaining information on diagnosis, maintaining mental health and following treatment. The use of video consultations could help with this, or families could be offered the opportunity to meet with clinical staff separately to discuss what is happening and what they can do. Prison officers could also be trained so they know what they can do to help in those conversations. It was noted that the placement of prisoners so that they are physically closer to families would help with involving these support networks.

Of course, some individuals, especially those with long-term sentences, do not have established relationships outside prison, and it will be important to provide them with alternative forms of personalised support.

Training staff, especially those early in their career

It was emphasised that, like the NHS, the prison service is challenged in terms of staffing and in recovering from the disruptions resulting from the COVID-19 pandemic. Any improvement that is based on seeking more staff could be difficult to achieve in the short term, so interventions should be based on the resources available. Given these constraints, it is also critical to work across the prison, justice and health systems, rather than in silos, to make the most of any resource flexibility. An example here could be expanding the role of the chaplaincy, given the personal support skills they have established in areas, such as bereavement counselling.

As with most areas requiring improvement, specific training should be considered, especially if this can focus on improving mutual understanding of the different systems and raising awareness of specific lived experience challenges faced by prisoners. It was suggested that a particularly powerful way to do this would be by providing short courses for both medical and prison officer students. Reaching people at an early stage of their careers could be especially effective in helping avoid or tackle misperceptions and stigma by highlighting the issues prisoners face and what they may be experiencing.

The Policy Lab also affirmed the real sense that prisons are ‘mysterious places’ for NHS staff, so connecting staff from both systems and sharing lived experience stories should be part of educating them about how the prison works and how prisoners experience care. While quite a lot has been done to improve health literacy in prisons, less has happened with regard to prison literacy in health care, so that clinicians understand what is and is not possible.

Involving charities and other stakeholders

The very valuable role of charities was underlined by several examples, including experiences of Macmillan Nurse-funded posts. Voluntary sector organisations can be very effective in acting as confidantes (perhaps covering for the lack of family and friends) or training prisoner peers to bridge the gap between individual and health settings and navigate prison processes. However, this support is very variable across the country and is also not resilient, often being withdrawn because of budget constraints. Anything more that can be done to resource and enable the involvement of these organisations is likely to contribute to the improvement of care.

To help with this, and generally to flag the need to address the outcomes for prisoners with cancer, it is necessary to bring commissioners and provider management into the conversation, sharing the findings of the research and involving them in relevant networks.

Using cancer as a model for improvement

Some of the challenges faced in providing care are not unique to cancer and apply across other conditions too (e.g. completing the application to get a doctor’s appointment). Although there are a relatively small number of cases, it was suggested that cancer care can be a lever for improving care more generally, creating learning that can be used across the whole system. This could involve piloting improvements in small areas to see what works.

So, for example, sharing learning and establishing networks across the systems can bring cancer specialists together with prison care specialists to understand each other’s worlds, which would benefit not just patients in prison but also other groups, such as homeless people.

The need for awareness and effective cancer screening

Increasing health literacy and cancer awareness

Increasing levels of health literacy among both prisoners and staff would help with adopting preventative behaviours (e.g. improved diet) and spotting potential symptoms. Good examples of work to generally improve this include Macmillan Cancer Support awareness raising as a powerful part of the community pathway and the way Hepatitis C services have proactively been brought into prisons.

It was agreed that investing in the use of videos, such as that developed by the project, and messages that could be broadcast on prison TV or radio would be a great way of getting important messages across about health generally and cancer signs and symptoms specifically. This could also be used to communicate the practicalities of going through the healthcare process. Alternatives to messaging online could include greater use of literature, posters and canteen bags.

Co-ordinating and promoting cancer screening

Early intervention is key to appropriate cancer care and better treatment outcomes. Many participants emphasised that screening is a key part of this and is especially relevant for detecting disease in individuals with breast, cervical and bowel cancer who are not yet showing any symptoms. Given the individual backgrounds of people in prison, prison can also be an opportunity to access health care that was not used before.

It was suggested that the COVID-19 pandemic has hugely impacted the delivery of screening and that efforts are needed to recover from this but also to go further in establishing a more effective approach that sees a much higher proportion of eligible individuals take up the offer of screening.

Alongside increased information, there should be regular screening for these cancers as in the community that take account of the external factors that shape people’s routines and that may act as barriers to prevent take-up (e.g. timings that clash with social and other events going on in the prison).

There are examples of the reported experience of routine screening being good (especially in relation to women’s health), although there are often problems moving from the screening result to the next stage of getting a follow-up appointment.

The need for effective diagnosis

Getting appointments

As shown by the qualitative findings, once someone is concerned enough to seek help, one of the biggest obstacles is successfully completing the application forms to get an appointment. Many individuals find it difficult to complete these forms because of accessibility issues (e.g. dyslexia) or an inability to articulate the issues.

It is then common for applications to ‘go missing’, and attempts to follow up with prison staff can be tricky, with individuals being accused of ‘causing trouble’. This response is part of a broader culture where trust between prisoners and staff is a major issue such that prisoners are not believed or there is suspicion of a hidden agenda.

Better questioning at reception

It was suggested that some diagnoses are missed because of the way questions are asked at reception. This can be improved by asking questions in a variety of ways on the same questionnaire, by listening more actively to ‘unpack’ what the individual might be experiencing, and by taking time to explore issues (e.g. why the person has not turned up at certain appointments).

Identifying and supporting health champions

Tackling the stigma attached to seeking help and/or going to prison health services or NHS hospitals, especially for men, was seen as a key area for action. Men may be less proactive in accessing health care, more worried about ‘nurses gossiping’, and embarrassed to ask for help with very personal issues. In addition, the fastest-growing group of people in prison with cancer are the over-fifties, who may not want people to know their background and who often have experienced stigma in mainstream settings, such as hostels and psychiatric care. All of this leads to delays in getting a diagnosis.

The use of prisoner ‘health champions’ was seen as a large potential opportunity to help with this. Individuals could be much more willing to speak to their peers and could learn from the health champions about symptoms and the process of diagnosis and treatment. They can also support people in prison in completing the application to get an appointment.

This intervention has the advantage of not necessarily being expensive to implement. The group could include those currently in prison but also those who have been released and are happy to return for visits and who nonetheless represent ‘someone like me’.

Accessing advice

Individuals should be able to access advice that is relevant and timely. Suggestions to support this include having approval of specific phone numbers in place so that individuals have a direct line to oncology services and increasing the use of video consultations that remove the reliance on escort services.

Ideally, resourcing should be increased to enable external nurses to work in the prison setting. Very effective examples were cited (e.g. Macmillan Nurses, NHS trust clinical nurse specialists) of support that can be given at appointments, at routine visits and in liaising with families. The role of clinical nurse specialists was felt by many participants to be by far the most useful in providing care that is personal and helpful (e.g. helping overcome some of the privacy issues and providing continuity).

However, these roles being relied on as widely available was questioned by some as they can be removed because of budget constraints. Ideas to improve their sustainability included organising them on a regional basis and delivering some of the clinical nurse specialist support using virtual consultations that draw on a core team of staff who are located nationally.

The need for a better experience of treatment

Ensuring more privacy and dignity

It was agreed that interventions to increase privacy in attending appointments, undergoing procedures, and producing samples for testing should be developed. Very practical examples were suggested, such as using a longer chain between the guard and the prisoner or having separate consultation spaces. One approach might be to create a working group with key staff and people with experience of prison cancer care to generate a list that could be reviewed for feasibility and then trialled in different prisons.

Increased use of communication technology

There was strong agreement that communication technology has the potential to transform interactions with hospitals, but views were quite mixed about how quickly this might be achieved and about potential variation between different prison settings.

It is evident that such technology could help with retaining information that is communicated and with protecting privacy of conversations, especially if there is good co-ordination between prisons and hospitals in setting up this technology. Ideally, the technical capabilities should then remove some of the variation experienced because of individual staff behaving in different ways.

However, while the technology to provide virtual consultations already exists, providing access to such consultations is complex. It is necessary for the prison to have an appropriate room to house the technology and for the system to be used by the relevant departments in secondary care. As noted earlier, video consultations would also allow families and others providing personal support to take part directly in conversations.

There was considerable interest in the use of ‘in cell’ technology, with the example given of the trialling of tablets in cells. This could open the way to using specific apps to help address health literacy issues and keep track of treatment. It was also proposed that two-way phone lines in cells be used so individuals can call out to dedicated support lines. Currently the phone lines are often one-way only.

Although technology offers many possibilities for supporting improvement, there is a need to guard against it embedding inequalities, from either variation in provision (e.g. between the technology available in modern prisons and the lack of it in older prisons) and/or the individual’s ability to use it (e.g. digital literacy, accessibility issues).

The need for continuity of care

Because of the relatively lower levels of health literacy among people in prison, providing continuity of care post imprisonment is especially important if treatment is to be sustained and the best outcomes achieved. For example, when people are released from prison, it is important to ensure that they are provided with their health records and the date and time of their next appointment and that they are able to engage independently with their healthcare provider.

There was again agreement that place-based approaches should be a focus of this. However, in making these work, all those providing care who might be able to play a role (e.g. charities) need to be encouraged to think creatively about how best to support such complex cases and need to be aware of the potential risks of people falling between the gaps in the care pathway.

Questions and options for research

The Policy Lab concluded by identifying further questions and/or options for further research work to consider:

• How do new NHS governance structures (e.g. ICS, Cancer Alliances) best cater for the needs of the prison population, and would a national mapping exercise of approaches help with understanding this?
• What can be learnt from the experiences in Scotland, Wales and Ireland?
• What else works on the experiential side that can be learnt from other parts of health and social care?
• How much is currently done by the voluntary sector, and can this be used more?
• What is the potential learning from other areas in the inclusion agenda for health services (e.g. for sex workers, homeless populations)?
• How can self-care be improved in prisons (e.g. using social prescribing)?
• Implementation of individual improvement interventions risk creating or embedding inequities (e.g. around technological literacy) – what is needed in terms of a multiplicity of approaches to avoid this?
• What is driving discrepancies in curative care (e.g. what contributes from prison, health care and individual perspectives)?
• As people travel through the system, to what extent are they let down by care in the community?
• Is there scope for some form of performance management around this group, including transparently reporting on variations in outcomes so that patients can also understand what is/is not working (e.g. around referral times and other standard measure used across health service)?
• Given the long lags in getting data, it may be hard to track the impact of improvements on outcomes, so what would be the intermediate measures we can look at?