Content note: mentions of self-harm
The British Journal of Psychiatry will never be on my reading list but in September it featured an article which deserves your urgent attention. The article was remarkable since written by a consultant psychiatrist. Dr Chloe Beale suggested that mental health services may be designed to keep service users out.
In the concluding paragraph, Dr Beale writes: Patients and carers have been speaking out about exclusion and iatrogenic harm for too long; psychiatrists complaining about blame culture similarly. It is time this was translated into action by those with most power to effect change.(1)
I want to respond to that unexpected article with a survivor’s account of service exclusion. No words can do justice to the hurt and damage caused by a label of ‘emotionally unstable personality disorder’ (EUPD) and subsequent rejection by statutory mental health services. My mental health story started when I was 18 years of age. I was a long-term inpatient being re-fed following Anorexia. In a specialist unit I was given major tranquilisers, Chlorpromazine and Melleril, to control my self-harm. In my mid 20s I was sectioned several times for life-threatening self-harm. Despite the ongoing memories and nightmares of hospital stays, the later rejection by mental health services has been far harder to come to terms with than past coercion.
I was discharged by mental health services ten years ago. While I have been assessed in the intervening years, it tends to go the same way of immediately being discharged back to the GP. The Community Mental Health Team (CMHT) decided six years ago that they had done all they could for me and have nothing more to offer. My EUPD label will never be reviewed though it determines how my GP surgery treats me. Any Crisis Home Treatment team or CMHT referral would be rejected. If I went to A&E and saw their Psychiatric Liaison team I would be discharged after a brief chat.
Discharge by services with no possibility of return, is made worse by the blame game. I was given the additional diagnosis of ‘dependent personality disorder’ in one of the many discharge letters. I have been told I have capacity to make poor decisions, which is said of those who self-harm without psychosis. The CMHT have previously written to my GP that I should take responsibility and it would be a travesty to foster further dependency. I imagine my past medical notes to be a charge sheet. The charge is that I am dependent, difficult and a time waster. I have no right of reply or appeal. Clinical opinion can never be challenged or erased.
Sending long-term patients back to the GP allows new referrals to come into the system. I am of course in favour of new patients receiving the treatment that they need and deserve. However, ‘older’ and discharged patients do not disappear. The only facility available once discharged is an annual ‘mental health review’ with the GP surgery. I opted out of this year’s offered review as it would be delivered over the phone with a wait of two months. The questions in a review about weight, cholesterol, smoking and drinking do not help my mental health. I have to repeat why NHS mental health services have said they cannot get involved.
There is no celebration of ‘recovery’ with the discharged status. While I am in full-time work and have friends, I feel like a recovery failure. I have missed out on relationships and children due to my past preoccupation with my mental health. A body covered by scars, some of these visible even with long sleeves, makes it hard to feel I could meet someone. In my youth I thought that self-harm may be taken seriously and had no idea that it would be seen as an impulsive trait of EUPD. I live with my mistakes and my scars are a constant reminder.
I cannot feel I achieved when what I have partially overcome is a disdained clinical condition which is a dustbin. I hide the diagnosis from employers and acquaintances for fear they will look it up on google. If I relapse health services say this is ‘poor coping’ and failing to apply skills learnt in past therapy. The CMHT have told me that I was a very lucky girl to have ever had individual therapy over 10 years ago when most patients are treated in therapeutic groups.
There are no safe spaces to talk about iatrogenic harm and rejection. The service manager at my local voluntary sector resource centre said “there is always us” when I explained about the exclusion. All this centre offers is activity groups at times when I am at work.
I do know other survivors who are also discharged back to the GP without recourse to services again. These friends have diagnoses of severe mental illness such as paranoid schizophrenia and bipolar affective disorder. They are on medication with serious side effects. They cannot change their medication regime as GPs do not want to do this without psychiatrist involvement which is difficult to obtain in a timely way. If friends do speak to a psychiatrist, who does not know them, their medication is increased. One friend was recently discharged by the CMHT just two weeks after the death of a parent. Judgements about discharge are made by the ‘team’ which is under pressure to reduce caseloads.
It is difficult to obtain evidence for benefits once you can no longer use mental health services. The Department of Work and Pensions (DWP) uses secondary care involvement as an indicator of whether a claimant has a serious mental health issue. The DWP does not care that services have changed their approach to short-term interventions. Recent medical evidence is essential if you try to claim Personal Independence Payment. Many GPs will not provide letters to support benefits applications and so the claimant is alone in trying to prove they have an enduring mental health problem.
I believe that the issue of forced treatment has higher profile with campaigners, charities and the Royal College of Psychiatrists than exclusion. I understand that patients can lose their liberties and be medicated against their will on sections and protections are needed. With a reduction in inpatient beds and ever-increasing demand, it is likely though that service exclusion will affect far more individuals and families than those who are assessed under the Mental Health Act. As excluded survivors we cannot even take part in service user involvement initiatives. Our ideas and insights are missed by commissioners.
Mental health investment is welcome but attitudes of professionals may still result in gatekeeping. While Psychiatric Liaison teams can exist 24/7 in acute hospitals, if the service offer is a brief assessment before discharge, it becomes a service that exists to deter attendance. Charities with limited funding need to reach those who are outside of statutory services before they present again in a crisis state.
Anyone who cares about mental health will understand workforce shortages and pressures lead to the closed door. Honesty about the reasons behind service rejections would make a great difference to the patient on the receiving end. Talking about limitations means the patient can process the reality for services. Honesty prevents the tendency to blame the patient for dependency and help seeking. There should be no shame in having a mental health issue and struggling but exclusion means the individual is the problem to talk harshly to so they do not return. Even a one off conversation where the professional admits that there are too few staff would help a patient to know it is not their fault they do not qualify for support.
Exclusion hurts, shames and harms. It is confusing given we were once seen as in danger enough to section and now are not worth even a phone call to ask how we are managing. NHS campaigns encourage us to ‘reach out’ and ask for help though it would be a dead end if many of us tried. Survivors of past services do not go away as much as the mental health system may wish that. Please think about your words and be honest with us.