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The NHS web page summarises: How capacity is assessed What is 'best interests' Deprivation of liberty Advanced statements and decisions Lasting powers of attorney The court of protection Professionals duties

My much loved daughter-in-law, Mariana Pinto, died on 16 October 2016. She was 32. Her tragic and unexpected death raised many questions for us about standard practice by psychiatric services and about patient safety. The evening before she died, Mariana was taken by ambulance to her local A&E department, escorted by four police officers, and handcuffed for her own safety. She was psychotic – delusional, paranoid, violent and very distressed. She had attacked her husband (my son) who had visible bite marks, scratches and bruises. It was a first episode and totally out of character. She had not eaten or slept for several days. In A&E she was brought food and drink but spat it out, believing it to be poisoned. She kept trying to escape from the cubicle. The police stayed, stating that she was extremely vulnerable. Eventually she agreed to take a sedative – but not before she had held it under her tongue for some time, and only after we, her family, were able to persuade her that she should take it. Once she was finally sedated, she was given various tests to rule out any physical cause, and a mental health act assessment. This was done with her and her husband together. There was no attempt to see him separately. She was deemed competent to make decisions about her care, and as she wanted to go home, was discharged, with a referral to the local Crisis Team, who we were told would receive the referral at 8 am the following morning and would arrange to visit. The psychiatric team operate within A&E but for a separate mental health trust. This same trust runs the Crisis Team. It is deemed outstanding by the Care Quality Commission (CQC). The following morning, there was no contact from the Crisis Team. My son rang them at midday to ask when they would visit. They said normally between 5 and 7 pm on Sundays and to ring back if he needed to. He rang back at 3.30 pm stating that she had deteriorated rapidly and asking for the visit to be brought forward. He was told that it could not be. At 4.00 pm Mari ran out of the open door to the roof terrace and jumped off it. She did not survive her injuries. The Coroner gave a narrative verdict, making it clear that Mariana did not know what she was doing, though her actions were deliberate. She also gave a Prevention of Future Deaths Report. Whilst the trust is obliged to reply, there is no statutory obligation to demonstrate that the actions they have promised have actually been taken. There was no attempt at any risk assessment. There was no attempt to check that my son could speak freely (he could not – it was a studio apartment). There was no attempt to call the emergency services on his behalf, and no attempt to check he had been able to do so. None of this is regarded as negligent or especially problematic. Since her death the Crisis Team do visit on Sunday mornings. We also found out that the number we were given to call was for service users already allocated a key worker, rather than a more general number – but as my son spoke to senior staff on each call, this should not have made a difference. After her death we raised the following questions: Surely given the bite marks and bruising, her husband should have been allowed to give his information to the psychiatric team separately? No, it turns out that while this would have been good practice, it was not negligent. Surely, given that her family knew and loved her, we should have been asked post sedation if she seemed like herself (she did not). No, it turns out that this is not seen as necessary. It’s not even regarded as good practice. Surely, given that she was paranoid and had told the police that she did not trust her husband, her husband should have been given private space to discuss the discharge and rehearse what to do if things went wrong once the sedative wore off? And surely we should have been told that the Crisis Team is not instead of calling 999 in an emergency. And efforts made to help us to decide if the situation was an emergency. No, it turns out that while this would have been good practice, it was not negligent. The mental health trust has now introduced a written discharge template for care and contingency planning. We have been told that the circumstances of Mariana’s death were unusual and could not have been foretold. That may be. But there are still lessons to be learnt. To improve patient safety in mental health crisis and to learn from deaths, we need to change standard practice. It should become standard to: See family and friends separately if someone is paranoid, to understand the family’s concerns, learn more about the patient and work together to consider how best the patient can be kept safe and helped. Provide written care and contingency plans to patients and their family Use one number for a Crisis Team helpline, with clear policies to offer help and support to service users and to their carers, and proper protocols in place to assess risk and intervene if someone is at immediate risk of harm. Make it very clear to patients that a referral to a Crisis Team is not a substitute for calling 999 in an emergency (where there is an immediate risk of harm to the patient or others) and to distinguish between a crisis and an emergency. Other professionals have a role in this too: On discharge, the A&E staff (who were very kind and very concerned) could invite the family to come back if the situation deteriorates, making it clear that it was an emergency, was a legitimate use of 999 and of A&E, and that the Crisis Teams are not for emergencies. The police could do the same, if they are trusted by the family (in many cases they are not).

I was experiencing symptoms of Covid-19 and when I became unable to complete a sentence or walk to the bathroom, my GP advised me to go to hospital. I have mental health difficulties and one of the staff recognised me from when I had been admitted previously, following a suicide attempt. I felt that I was treated like a 'frequent flyer' of A&E and that my symptoms were taken less seriously than they would have been otherwise. I was sent home after my tests for Covid came back negative and was told that it was just anxiety. I got much worse over the coming days. If I had tested negative, why was I feeling desperately unwell with all the published symptoms of Covid? I thought that I should be physically active if I didn't have Covid-19, so I pushed myself and berated myself when I repeatedly became unable to breath with a pounding heart upon any exertion. I couldn't cope caring for my four children and was in a 'critical' dangerous mental state many times. I self-harmed to try and cut off from feeling so awful. My physical health deteriorated. The ambulance was called by the GP who had sent a nurse to assess my oxygen levels and the paramedic said I should be in a coma according to my obs. This made me feel less like I was making it up, but it was still in my head despite my husband telling me repeatedly that the results of the test are 30% wrong. The paramedic gave me oxygen and I protested strongly against going to hospital a second time. The paramedic insisted I went, put me on oxygen and reassured me he would ask the hospital staff to relate to me as a patient who was showing clear signs of Covid and that I did struggle with my mental health but that I was doing my best to recover. I also asked the paramedics to inform the hospital staff about my eating disorder so they could gently help me to manage my low blood sugar without judgements and causing me further shame. In the hospital I saw a Dr who confirmed that I did have Covid-19 and that my test must have been a 'false negative'. I had felt judged, dismissed and had doubted myself. The first thing anyone I spoke to asked was whether or not I had had a test and whether it was positive. The negative test result isolated me from calling family and greeting neighbours as I didn't have the energy to go into the false negative answer. I found that saying my test was 'negative' sparked a surge of invalidation of everything I was experiencing. The isolation caused me further significant harm to my mental health. Among other fleeting symptoms I have had overwhelming fatigue, breathlessness, sweats or chills, no smell or taste, a rash, headaches and low mood. After nearly four weeks I am slowly recovering. I am lucky to have a social worker, family support worker and psychologist available over the phone through this period, so I do feel my family and I are supported. But I am interested to know if anyone else has found their symptoms are being quickly dismissed as anxiety when they are sure they have the virus? Or if anyone else feels like they haven't had their symptoms taken as seriously because of their mental health difficulties?

This powerful, honest, blog by Alison Cameron describes what its like to be a patient in a mental health unit. She calls for mixed sex wards to be eradicated within mental health units, better staffing and increased trauma training for staff. Her recount reinforces the importance of patient dignity, respect and humanising patient care within the mental health setting.