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My dad is 60 years old. He was diagnosed with young-onset dementia 3.5 years ago. For the past 2.5 of those, he has been relatively stable – a slow, but steady decline. In the past year, he’s changed dramatically. Problem 1 – why were they left with no ongoing support? As Dad is young, he slipped through the net of adult social care. Apart from a home visit 3.5 years ago, my parents have been left to deal with the dementia by themselves. No one knew who should pick his care up. Just before Christmas, we hit crisis point – Dad’s behaviour was becoming far too difficult and unpredictable for one person to handle. In February, we’d had another home visit and a checklist assessment was carried out. This was the first step towards help through an NHS Continuing Healthcare assessment. Problem 2 – No protocol in place for adults with young-onset dementia Fast forward a month, and adult social care has washed their hands of Dad. Even though he’s an adult, he doesn’t fall under their team. He falls under the mental health team – and even though they work in the same building, his case hasn’t been transferred internally. The request for help has to be resubmitted. So, we start again. Problem 3 – COVID-19 hits The COVID-19 pandemic is a stressful time for all of us. But for carers, there’s an extra layer of uncertainty – how long will any respite or day care continue, before they’re left out in the cold? More pressingly for our family, Dad’s care home went into lockdown while he was there for respite. It meant we faced the agonising choice – leave him there for the foreseeable, or know that we would have no help, support or relief from his 24-hour care needs. We opted to leave him there. A few weeks later, the fever started. The next day, his persistent cough developed. The care home wanted him out and asked my mother to collect him – against all Government and NHS advice. They risked him passing it onto her. My initial concern was if he did, who would call for help if she needed it? The situation calmed and he has been allowed to stay for at least the remainder of his period of self-isolation. But, while he’s there he’s just sitting alone in his room. No one to talk to, no comprehension of what’s going on outside. Nothing. What will he be like after self-isolation? Will his dementia deteriorate rapidly? Will he recognise anything afterwards? Only time will tell. Problem 4 – the financial assessment As part of NHS Continuing Healthcare funding, the adult social care element requires a financial assessment. (Yes, you’ll note adult social care is apparently taking an interest now money is involved.) They ask that you try to fill in the mammoth form within 7 days. It’s overwhelming, especially in the middle of a stressful situation. You’re given no information as to what support package you might be offered – but expected to give out some of the most personal details about yourself. The pandemic has exacerbated an already overburdened sector. There’s no face-to-face support for those overwhelmed with documentation. There’s no time to explain what it all means. There’s no time for help for those who need it. How can the Government help? Government has stepped in to provide much needed help and support to many people – but their job is essentially fighting fires. Adult social care is a ticking time bomb, and it’s putting people’s lives at risk. I’ve three asks of them: Care assessments must continue. Care homes must treat those with COVID-19 in line with NHS and Government guidance. Adult social care services must be adequately funded to allow them to fulfil their duties and provide support during this nightmare time.

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).

How you can contribute: The project leads are looking for suggestions from colleagues who may have worked with domiciliary carers and tested ideas around deterioration. Any advice on measures and impact and data sources is also encouraged.

This editorial by Dr Michael Farquhar, published in Anaesthesia, explains the importance of taking breaks while on shift and ensuring a good sleep between shifts and the inextricable link between sleep and patient safety.