In a nursing career of more than 22 years, food refusal – sometimes referred to in popular culture as a ‘hunger strike’ – is one of the most complex, multifaceted patient safety challenges I have seen facing health professionals. It is also one of the most misunderstood.
For many people, prison nursing itself can seem quite mysterious – a unique environment so rarely in the spotlight, one that conjures up images of high walls, jangling keys and clinking gates. Perhaps it isn't so surprising, then, that food refusal is something of a ‘hidden problem’.
As a nurse with a special interest in safeguarding, I have been closely involved with the management of food refusal cases in prison settings and the complex safeguarding issues around them. I set out to remove some of the mystery – to understand some of the complex reasons behind food refusal, challenge myths and shine a light on the challenging work involved in keeping patients who refuse food safe from harm.
In examining research papers, I predominantly found studies from the USA and the rest of Europe, with little attention given to the reality of food refusal in the UK. So, in 2021, I applied to NHS England for funding to deliver a safeguarding project that would highlight key areas for change.
My project has now been running for over a year. Here's what I've learnt, through first-hand interviews with staff in two men's prisons, and from supporting teams in managing these extremely complex cases.
Motivations
The most important starting point for my project was to tackle misconceptions around food refusal. Although it can often be a form of protest, the staff I interviewed thought that it was sometimes used as a way for demands to be met and tended to occur in clusters or groups. One nurse told me:
‘We can go for years without [any cases]… then we seem to get a batch of maybe two or three, and they tend to be in areas where they're quite close to each other.’
The reasons for food refusal can vary widely – from protests against aspects of the prison regime to access to medication, problems with cell mates, or in the hope of being transferred to another prison. Some interviewees felt that food refusal could be used as manipulative tool:
‘They see someone else refusing food and they think, “Well, I want what he's got.”’
However, it was crucial to assess every situation on a case-by-case basis and not make generalisations.
Understanding the reasons why a person might begin to refuse food (and the risks it presents for them) is a key factor in helping to keep patients safe and de-escalating potentially harmful situations. For patients who have additional vulnerabilities, food refusal is also a safeguarding issue.
Mental capacity
One of the most important recurring themes in my interviews was mental capacity, and the challenges faced by nurses in assessing capacity for vulnerable patients. This is because a multitude of factors can lie behind food refusal – from simple anger and physical health problems to mental disorders, fear and paranoia. An accurate capacity assessment has to try to determine whether any of these factors are influencing a patient's behaviour.
‘Sometimes patients have preconceived ideation … maybe they've got an underlying mental illness … they might think their food is being poisoned, or that what they're eating isn't what they think it is.’
There is also the risk that what looks like voluntary food refusal is simply masking another problem, such as digestive issues, eating disorders, poor appetite or other illness. These challenges are exacerbated in cases where patients in the sample prisons do not engage well with health care or where they don't have an existing relationship with the main capacity assessor. I was told:
‘I'm asked to go in to [see] someone I've never met before, and go and assess his capacity. That's quite challenging when the individual doesn't know me. I don't know him. I don't know what his presentation is like normally.’
The Mental Capacity Act 2005 provides us with a framework for understanding these challenges and delivering health interventions when a person lacks capacity. For patients who are refusing food and lack the capacity around this, the need for a robust process and shared decision-making is crucial.
Clear roles and responsibilities
Effective partnership working is crucial. Although all my interviewees were generally positive about partnership working, there was some confusion around roles and responsibilities when it came to food refusal. This was especially significant when considering the risk of ‘refeeding syndrome’, a potentially life-threatening condition when previously starving individuals begin to eat again. There was a need for more training and awareness of risk among prison officers.
‘It has been known for officers to … give them bits of sugar to go in their drinks because they think they're helping. And it's that understanding … you actually could cause more harm …We have done a lot of work around it … After we have done that, they get it.’
Some healthcare teams thought that food refusal was seen solely as a ‘healthcare issue’, when more involvement was needed from prison services, particularly in seeking advice and support from hospitals and NHS trusts in the management of complex cases. The use of multidisciplinary team (MDT) meetings was explored and they were felt to be a positive aspect of managing complex cases:
‘For me the biggest [benefit] is about a shared responsibility, and the fact that you've got so many different professionals in the room … shared responsibility is the biggest thing.’
As part of the interviews, I suggested to participants that we create a food refusal ‘toolkit’ – a pocket-sized best practice guide that could be carried by nurses and prison staff to familiarise themselves with the appropriate care and protocols for food refusal.
Gradually, we began to pull it together, building in National Institute for Health and Care Excellence (NICE) guidance (NICE, 2017) and Department of Health (2010) guidance (superseded by a Home Office document from 2022), as well as seeking feedback from staff on the topics and areas where they felt most support would be needed. The toolkit is intended to improve patient safety and staff confidence in managing complex cases, especially in urgent situations or when MDT support is not available. It touches on the physical management of food refusal, mental capacity assessments and best interest decisions, planning MDTs, care planning and documentation.
One thousand toolkits have now been printed and delivered to all 18 of our prison sites and I am organising follow-up toolkit training sessions. We are also looking for opportunities to roll this out nationally, supported by NHS England and our Health and Justice (2023) partners.
A need for change
So, having explored some of the complexities around food refusal, what needs to change?
Currently, ultimate responsibility for safeguarding in prisons lies with the governor. However, as healthcare providers, prison nurses have responsibility for their own practice and are required to work within the statutory and regulatory guidance in their provision of care. In managing complex medical and ethical concerns around food refusal, and in striving to keep patients safe, this responsibility needs to be shared more widely.
I also think that there is an urgent need for better training and support for prison officers in understanding food refusal, and for stronger relationships to be forged between primary care and mental health teams so that the responsibility of mental capacity assessments is shared. Food refusal is a complex behaviour unique to secure settings, and it needs to be managed with compassion and insight into the stresses and challenges of prison life. In some cases, it will be a short-term concern and the patient will resume eating quickly; in other situations, it can be long term and complicated by mental health concerns and other issues.
Above all, nurses need to work together and feel able to raise risks or safety concerns, identify areas where training is needed in large MDTs and share learning from the situations we encounter. As my project continues, I will be conducting an audit on food refusal case management and reviewing it in 6 months to measure the impact of the toolkits on how cases are managed and on staff confidence. I hope it will raise awareness of the complexities around food refusal and create better support pathways in NHS England Health and Justice.