Since my beloved daughter in law, Mariana Pinto, died on 16 October 2016, I have been trying to improve mental health services. I wanted things to improve in the NHS Trust that assessed and discharged her, and in the mental health system. You can read more about Mariana’s death and our family’s experiences here and here.
I have had some small but important achievements:
I worked with the A&E department of the hospital where Mariana was assessed by the psychiatric liaison team (who are employed by a different NHS Mental Health Trust). At the invitation of the lead A&E consultant, I provided a talk to every single member of that A&E team – over a series of evenings, tacked onto their compulsory training days, in summer and autumn of 2017.
I was well supported to give those talks. Very well briefed in advance, including great care being taken that I still felt emotionally strong enough. Met on arrival, offered a drink, accompanied, debriefed. When staff were upset by my experiences, they were also offered support. Travel expenses were offered.
On one of those evenings, I met one of the A&E nurses who had cared for Mari when we first arrived at A&E, and had to leave when her shift ended. We held each other and wept. She told me she would never forget us. This mattered to me – to all of us. She cared and she showed that she cared. The lead A&E consultant amended their discharge procedures influenced by our experiences.
The lead psychiatrist for the mental health trust phoned me. She was thoughtful, reflective and kind. I felt that she and her team were trying to reflect and learn. She said they were developing a discharge template and invited me to comment on it.
There have been some occasions that were incredibly difficult:
The Serious Incident Review (SI) was a horrible process. Apparently, the reviewer no longer works for the Trust. He attempted to manage our expectations, and could not engage with our perspective. There was no apology. (We got an apology in person in 2018, two years after Mariana died. The new Chief Medical Officer of the Trust had a different understanding of the duty of candour).
I met with staff of the Trust to discuss training and also to discuss the wording of their website. Going to their HQ felt to me like going to the scene of the crime. The website wording was changed following a hard but good discussion. They had used the words crisis and emergency inter-changeably, saying that is how the public use them. I pointed out that in situations of immediate risk the public need to know it is not the same! The wording changed. And then, the other day, when I checked back, it had reverted to the confusion again.
I attended a day for managers on learning from complaints. When I arrived, I was not on the participants list. No-one knew where I should sit. There was no briefing in advance, or debrief. I assigned myself to the table covering the geographical area that Mariana lived in. When the CE opened the event, she talked with great pride at how she personally signed all responses to complaints because they were so important for learning. I had 3 letters from the Trust in response to our complaint. Not one was signed by her. I stood up and waved them in the air and said so. After that, the professionals at the table I sat at handled me sensitively, and genuinely seemed to engage, reflect, and think. But at the end of the event, the Chief Executive mouthed the words from the other side of the room, ‘thank you for coming’ and left. She did not cross the room to speak to me personally.
There have been times when I have found it hard but also worthwhile:
I attended a national Learning from Deaths event where a lot of other families were also in attendance. Meeting other families was incredibly helpful and made me feel far less alone. One of the very sad dimensions for so many of us in these situations is that friends and other family members don’t always understand. Being with people when I could talk about Mariana and be heard, helped me. And I met Rosi from MFC, and Peter Walsh from AvMa. It felt good to be able to thank him in person: without the help and advice of AvMa I cannot imagine how we would have coped at all.
I attended a day held as part of the review of the Mental Health Act. I was the only family member there, which felt hard, but two psychiatric nurses came up to me at the end, to tell me that my interjections and comments had really made them think hard about what they expected from families and how they needed to work much better with families to offer families information and support.
Some lessons and thoughts
If you are thinking you want to work with the NHS to push for change, then I think there are some things to be aware of:
- It is painful; sometimes almost unbearably so.
- Grief is a complicated business. It doesn’t end. You learn to live with it but some days are harder than others. It doesn’t make allowances for a meeting or a conference.
- Hearing from others’ who share experiences is helpful. There is comfort, learning, understanding and support.
- Trying to step back from my own experiences to think what could be beneficial to others feels really useful – when they take notice.
- Not being listened to, or just dropped, or not given feedback, adds to the harm already done.
There won’t be justice for what happened to Mariana. But there could be a legacy.