This is a reflection on my contact with mental health services in the UK, as both a mental health nurse and patient. I compare mental health services to a fortress, a strong protected building designed to defend itself and keep others out. Patients and even other professionals are subject to various defence and attack mechanisms aimed to prevent access to services. Many of these are integral to the design and fabric of the structure of mental health care, rather than due to individuals working for the service. As professionals within the system become more aware of these exclusion tactics they can start to question and reflect on their own practice and the culture of the wider health care system. The long-term hope is that fewer people will be unnecessarily excluded from desperately-needed mental health care.
I am a mental health nurse and a mental health patient. I was 10 years into my career as a mental health nurse when life changed forever. Almost overnight I unexpectedly descended into acute mental distress (‘illness’). I was no longer just a mental health nurse. I was simultaneously a mental health patient. What started with perinatal breakdown unfortunately extended into the realm of what is described as ‘enduring mental illness.’ This gives me a unique perspective of being both a consumer and provider of mental health care.
Some of my contact with mental health services as a service use, makes me wonder if they have more in common with a fortress than a place of safety, refuge, or a hospital. They seem to be designed with more measures to keep people out, than to welcome people inside. The definition of a fortress is a large, strong building or group of buildings that can be defended from attack (Waite, 2012). It is designed to be protected and hard for enemies to infiltrate. It has both defences and weapons to keep enemies out.
Modern mental health services have similar deterrents and barricades. By default, these foster an atmosphere of mistrust and hostility between service users and staff. This fortress of mental health services has weapons and defences designed to make access difficult. The system that we call mental health care can in fact cause excessive and extensive harm by excluding those who need it the most. I am in an exclusive position where I have a place both inside and outside the fortress. For a long period of time, I worked in one fortress whilst trying to access another fortress five miles down the road.
The defence of inclusion and exclusion criteria
Most mental health services have referral or inclusion criteria. Potential service users must meet one if not all of these criteria to gain access to the service. If this wasn’t demanding enough there are often additional exclusion criteria. This creates an unattainable list of do’s and don’ts. Common exclusions are substance misuse, a diagnosis of ‘personality disorder’ or the presence of learning disability (Allsopp & Kinderman, 2021). Some mental health services even have an exclusive list of who is privileged enough to make a referral in the first place.
To make matters more complicated and strengthen the defence, this sacred list is not readily available to others. Bizarrely, this often includes professionals working for the service. This gives confusing and mixed messages about what the service does and whom it can help. The staff are often as perplexed as the service users and referrers. The ever changing, unreachable criteria are regularly updated and amended, not to let people in but to keep more people out. This increases despair and frustration on both sides — so much so that service users may give up and stop trying to get into the fortress. Maybe this is the hidden hope.
The weapon of missed appointments
Even if someone dodges through the arrows of inclusion and exclusion criteria, their battle to get an appointment letter is not yet won. In what could be perceived as a further cruel culling of service users, an arrow of ‘missed appointment’ could be fired. If anyone dares miss a sacred appointment, they face immediate discharge from the service. Occasionally a reprieve of 10 days may be given if you make your sincere apologies in time.
What this fails to acknowledge is the very nature of emotional and psychological distress, and the desperate needs of the people who need help. Fear, social anxiety, paranoia, low mood and poor motivation appear to be forgotten. It is nonsensical that people are prevented from attending appointments by the very difficulties they are seeking help for. It widens the cracks that people slip unnoticed into on the periphery of the fortress. A missed appointment is one less service user on the books.
It also completely ignores social and health inequality. To contact a service to rearrange an appointment requires a charged, working and connected mobile phone. To attend an appointment involves transport, finances, local knowledge, confidence, and motivation. To read the appointment letter requires English language skills. This quickly and cruelly excludes anyone who does not speak or read English.
The shield of dehumanisation
I firmly believe there are kind, compassionate, and well-meaning professionals within the fortress — I was one of them. I had painful daily reminders of service limitations, long waiting lists and a lack of inpatient beds. The rationing of resources which must be communicated to desperate patients and their loved ones, has a psychological impact on the front-line nurse. Mental health services have had their compassion eroded by moral injury for longer than we can remember (Beale, 2021). Moral injury is the psychological distress of not being able to provide the compassionate care health professionals want to. One way to protect ourselves from moral injury is through language that dehumanises our service users.
The distress of being unable to offer vital services is partially mitigated by a well-established rhetoric taught to me as a student nurse. This language encourages professionals to distance themselves from any harm they may be causing. They talk of ‘inappropriate referrals, revolving doors, bed blockers, delayed discharges, gate keeping assessments.’ All this dehumanises the person in distress. Thankfully most professionals no longer refer to people simply by their diagnosis, but we still need to improve our language.
During one contact with mental health professionals, I watched my husband’s confused face when they talked about a gatekeeping assessment. I explained I would now be assessed again by someone else, who may or may not agree with the assessment I had just endured. I explained that remarkably it was a different team who had the final power to say yes, or no, to admission. And even then there was little guarantee of an available bed. He shook his head in disbelief. While waiting for this ‘gatekeeping assessment’ I felt like a prisoner trapped in a holding pen. All I could do was wait helplessly for those in charge to either open or close the gate.
The cover of blame
When mental health professionals do not have the resources to support people adequately, they are encouraged to turn the focus outwards, away from their own shortcoming or service failings. Instead, the blame is externalised onto those seeking help. This can be seen as another way to avoid moral injury. Patients are labelled as ‘too complex’ or ‘not complex enough’, as ‘too high risk’, or ‘too low risk.’ As a patient I have received all these labels and each one is as damaging and detrimental as the other. Too complex implies that we cannot help you. You are beyond our help! Not complex enough, implies there is nothing wrong with you. Why are you seeking help?
This strategy shields the mental health professionals from admitting that they cannot meet someone’s valid needs, and apologising for it. I’ve been in that position almost daily as a front-line nurse. I’ve subconsciously externalised the blame onto my patients. Upon reflection this was to protect myself possibly from moral injury or compassion fatigue. It was also the standard rhetoric I’d known since I was a student nurse.
This is a problem far bigger than my own personal nursing practice and values. This is a systemic language and culture which at best can be described as self-preservation and at worst self-delusional. We tell patients they do not meet our ‘thresholds’ and that we are encouraging them to ‘take personal responsibility.’ Beale (2021) proposes that these are methods of excluding people from services which are justified in terms of clinical need. Health care professionals believe they are acting on clinical need. I certainly did, and I remained compassionate and committed to providing the best nursing care I possibly could. It was only when I became a mental health patient myself that I realised the impact of such language.
The detour of signposting
Signposting, which conjures up images of road maps and traffic police, is a clever smokescreen designed to divert distressed people. Service users are placed on a ‘care pathway’ which is supposed to outline the treatment they will receive. Yet this pathway is littered with signposts to other services; detours which, it is hoped, will make us someone else’s problem. The professionals desperately holding up these signposts know little of where they are directing us to. Yet they remain forever hopeful that this new destination will have all resources we need. They know their own service doesn’t have the resources; we must admire their optimism that they believe someone else does. The blame here is not on the mental health professionals carrying the leaflets about alternative services; it lies with the organisation of services and the financial cuts endured for as long as we can remember.
The assault of resilience
Despite the many and complex barriers service users are expected to overcome, we are still expected to be resilient. This is perhaps one of the biggest ironies and insults of them all. After the constant struggle to access mental health care, services use the final insult of telling us we should be more resilient. I find this incredibly distressing as a service user. We should be praised for our resilience when we face another day living with enduring mental health challenges. I demonstrate resilience every single day when I navigate parenting despite these challenges. I am resilient simply by virtue of being alive today.
Simultaneously, the mental health professionals within the fortress are also expected to be resilient. Again, there is little meaningful support other than a wellbeing notice board and a mindfulness session if they are lucky enough. The responsibility for being resilient is placed on the individual – whether that be nurse or patient. The systems that cause moral injury and hopelessness take little ownership. I have once again experienced this as a mental health nurse and as a mental health patient. In both situations, it is damaging and difficult to endure.
The smokescreen of confusion
It was only when I became a mental health patient that I truly realised how confusing mental health services were to navigate. Despite being an educated professional, I struggled even to contact services by telephone. A complex map of who I could contact and when was littered with answer phones, extension options, and narrow windows of time when you could call. Crisis numbers and pathways change, with staff and patients left unsure of procedures and protocols. These baffled my mentally stable husband as much as they did me. Again, this results in service users and their loved ones being cruelly isolated and unable to seek help. At best it causes frustration and hopelessness, and at worst lives are lost as people slip through cracks while doing their best to seek the help they need.
Clinical letters are written about us, but again these are shrouded in secrecy, and have no input or collaboration from the patient. Yet they are treated as the highest authority on us. I am not the only mental health patient to feel this way (Dear GP Collective, 2009). Professionals disguise their personal value judgements as being objective and therefore the truth. I have been described as ‘not distressed’ on one of the worst days of my life. These judgements are placed at a higher value and importance than anything we may say about ourselves. Letters are placed in our notes as an inaccurate representation of our life history and current distress. How can I be an active participant in my own care if I do not know what is being written about me?
Why have mental health services become a fortress?
This is complex, and not caused or maintained by any one single health professional or service. It is integral to the way services are designed and commissioned. It results from the organisation of services, and complex web of care pathways. These systemic exclusionary cultures, language and beliefs are damaging to service users and professionals alike. I have experienced both; moral injury and compassion fatigue as a mental health professional, and pure hopelessness as a patient.
Disarming the fortress
The focus needs to shift from how to deny people care, to how to help them access care. The purpose of this personal reflection is not to condemn the dedicated and passionate mental health professionals who are working tirelessly in desperately under-resourced services. Rather, I wish to encourage professionals to examine their own practices and the services they work in. If these compassionate professionals can consider the experience of those attempting to access mental health support, then subtle shifts in culture and language will occur. Let us not forget that to experience mental distress is hard enough without needing to fight to access support.
Allsopp, K., & Kinderman, P. (2021). The use of diagnoses in mental health service eligibility and exclusion criteria. Journal of Mental Health (Abingdon, England), 30(1), 97-103. https://doi.org/10.1080/09638237.2019.1677875
Beale, C. (2021). Magical thinking and moral injury: Exclusion culture in psychiatry. BJPsych Bulletin, 1-4. https://doi.org/10.1192/bjb.2021.86
Dear GP Collective. (2009). Dear GP zine
Waite, M. (2012). Paperback oxford english dictionary (7th ed.). Oxford University Press.