I’ve had a few experiences of a loved one having some kind of breakdown or mental health crisis. What I have learnt is that the process of assessing a person in crisis takes very little, if any, account of the knowledge of the person’s loved ones/family/carers. The mental health crises that I have witnessed involved a person losing their mind and becoming psychotic. If you read about psychosis from people who have experienced it and survived, it is clearly absolutely terrifying. It can feel to them like everything in the world is directed at them – e.g. the TV speaks to them, adverts speak to them. This paranoia is very real to them, but they may be aware that they need to hide it from others.
Family members can and want to provide crucial information and understanding to mental health professionals. And, as important, need to be helped to understand how best they can help and support their loved one.
My daughter-in-law Mariana died on 16 October 2016. She took her own life in a very severe psychotic breakdown. 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 delusional, paranoid, violent, agitated 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 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 issued a Prevention of Future Deaths Report.
We were taken on by a legal team on a no win no fee basis. We learnt from 2 independent experts that none of this is regarded as negligent or especially problematic. They told us that the circumstances of Mariana’s death were unusual and could not have been foretold. The test for medical negligence is that a person has been given a reasonable standard of care – in other words, that anyone going to a busy A&E dept on a Saturday evening can expect this treatment.
- It is not standard practice to see a partner separately when doing a mental health act assessment, even if there are visible signs of assault. This was a first episode, so we had no idea that we should try to insist that her husband be seen separately.
- It is not usual to ask family or friends accompanying the person if they seem themselves post sedation. Again, this was a first episode. We were extremely concerned for Mariana and did not expect to have to insist on being listened to. We thought we could and should trust the experts.
- It is not standard to see the family/carers separately to rehearse with them what to do should the paranoia rebound. This is the part that feels unforgivable to me. It could not have been predicted but it wasn’t entirely unexpected according to the experts. So why not discuss what to do in advance. Presumably because you’ve been sent home with the phone number for the Crisis Team helpline.
- But no-one thinks it is necessary to explain that a Crisis Team and its helpline is not instead of calling 999 in an emergency. No-one thinks to explain the difference between an emergency and a crisis. After months I worked out that a crisis is when you feel awful but an emergency is life-threatening. And you should ring 999. How are families to decide which it is?
- Crisis helplines do not undertake risk assessments as standard when talking to a carer/family member. They do not check as standard to see if the person can speak freely. They do not check if a person has been able to ring 999, or ring on their behalf. This is also unforgivable in my book. The person who took my son’s call, a senior nurse, responded to my son’s obvious desperation by stating the standard visiting hours on a Sunday (a recording of the call was played in the inquest). They agreed my son would ring 999. He never checked my son was able to. He wasn’t. Mariana was too paranoid. And he was frightened of her being handcuffed again. They were in a tiny space and he could not speak freely.
There is a lot of emphasis, rightly so, in mental health services on working closely with service users. But not with carers. And yet, Mariana might not have died if her family had been properly involved.
There is a very good account by a journalist Hannah Jane Parkinson: ‘It’s nothing like a broken leg’: why I’m done with the mental health conversation
I have written about Mariana’s treatment here: Safer outcomes for people with psychosis