The holes in the net

 
June Graham

This is a hard blog to write because I like to be nice to people. I don't like to ruffle people's feathers, but some of the things which happened to my sister when she was suffering from a mental illness were not nice, and so today I am writing about that.

I won’t detail all the missed opportunities which occurred during the last months and weeks of Liz’s life. All I’ll say is that when I heard she had taken her life, I knew something had gone very, very wrong, because Liz was a fighter. She loved her children very much and was doing her best to be well enough to be with them. And Liz’s case is not exceptional. I have heard from other families, bereaved by suicide, who feel that if their loved one had received even half-decent medical care then they wouldn’t have lost them.

About 6 or 7 months after Liz’s death, the NHS issued a Local Adverse Event Report. An adverse event is a huge understatement for the devastating loss of someone who was a daughter, wife, mother, sister and friend. I hoped that the report would give me some insight into what had gone wrong, or at least highlight what could have been done better, so that some change for the good would come out of Liz’s death.

Instead, the report was like receiving a sickening punch in the stomach when I was already flat on the ground. A few things were flagged which could have been done better, specifically the lack of communication which led to each of Liz’s desperate cries for help when she called NHS 24 being treated like an isolated, one-off incident so that no-one had the bigger picture. However, the report concluded that even if the NHS had done things better, Liz was a lost cause and nothing could have been done to stop her taking her life. It put the whole blame for her death firmly on her shoulders even though we as her family saw many missed opportunities to intervene and give her help. Due to austerity and budget cuts, the mental health care Liz received during her health crisis in 2018 was much poorer and less adequate than the care she received in 2011 when she first became ill with post-natal psychosis.

I still feel physically queasy when I think about the NHS report. My other sister and I made a list of questions which we felt were unanswered by the report and sent these to the health board. We never received a reply, despite the fact that our letter was sent again by the Scottish Fatalities Investigation Unit. The lady whom I spoke to at the SFIU did not seem surprised that I received no answer. The way that our concerns about our sister’s treatment were ignored was itself devastating, another blow on top of the many which we had already received. I felt that our voices were stifled. 

Worst of all, I felt that if no-one was prepared to admit that mistakes had been made, then nothing had been learnt from my sister’s death and others could and would die because of the same failings in the system. It felt like her death was robbed of meaning. No-one was willing to read her message of desperation. 

By this point, I was in a very poor state physically and battling chronic pain. Emotionally I felt as if I was navigating an Atlantic storm in a tiny coracle. I had no physical or mental energy to push for answers or recognition of the failings in the system which should have supported her. For the sake of my health and sanity, I had to let them go.

Five years later, I still struggle to find any meaning in Liz’s death, to point to even one single thing which has changed for the better since she died, although I now have a daily meditation practice. It’s the only way I’ve been able to survive.

In our third art workshop, Jane challenged us to think about what we would like to say to society about our loved one’s deaths. A week or so later, I sat down and wrote this. It's what I feel Liz’s illness and death are saying to me. I give it, just as it came to me, and will say a few more words at the end.

The holes in the net:

You saw me as less valuable because I had a mental illness.

You didn’t value me because I was unable to work full time or keep up with the fast pace of modern life.

You saw me as a problem to be fixed with chemicals.

You didn’t see me as a whole person.

You didn't see the complete picture.

You didn’t see me as a person who loves and is loved and who makes an invaluable contribution just by being here.

You didn’t listen when I said I was frightened of taking more medication.

Because I struggled with some aspects of life, you didn’t respect my views or see me as an important partner in my own healing.

You dismissed my cries for help, even when I said I was struggling with suicidal thoughts.

You thought you knew best. You told my family to trust the experts instead of their own instincts.

You forced me to take medicine which carries a risk of causing suicidal thoughts.

You discharged me from hospital at short notice without following your own guidelines for discharge or for monitoring a change of medication.

You ignored a mental health nurse who questioned whether I was well enough to be at home.

You didn’t keep me safe.

You saw me as a problem to be fixed. You didn’t listen to my story.

Who are you? You are many people, some of whom were doing their best, many of whom were overworked. You are a society which values the economy over well-being. You have the wrong priorities. 

I am not the only one who was sick.

 

I include myself in some of these you’s. The system of mental health care is flawed, not the people who work in it, most of whom are overworked, under paid and doing their absolute best. The mental health nurse who had questioned whether Liz was well enough to be discharged from hospital, was so badly affected by Liz's death that she had to take sick leave. I wanted to tell her, IT’S NOT YOUR FAULT. 

I still struggle with a voice inside me which says, it’s your fault your sister died, you could have done more. It's devastating to struggle with guilt about something you didn’t choose, can no longer change and, even if you could have foreseen it, may not have been able to prevent. That’s why I don’t want to point at anyone working in the mental health service and blame them for not doing enough. 

If I blame anything (and I know it's not good to fix on one thing as the answer to a complex event which I will never fully understand) it is austerity. Mental health care has been in the frontline for cuts. At the same time there has been a growth in people struggling with mental health problems. 

The long-term mental health ward where Liz recovered when she was first ill was closed and replaced by a ward in another council area. This ward only had capacity for short term stays. During her final illness Liz was repeatedly discharged from hospital when she was still too ill to manage at home. She was readmitted a week or so later for another short stay before being discharged, often more ill than when she had been admitted. The ward where she stayed had a number of other problems such as depending on a series of locum psychiatrists. Due to the number of people who had taken their lives shortly after being discharged from this ward, bereaved relatives had campaigned for a public enquiry which was ongoing at the time that Liz died.

It would be simplistic to say there is one answer or reason that explains why Liz died. Many little things added up. She was a vulnerable person, struggling with what Alastair Campbell the Labour politician whose brother had schizophrenia called 'the shittiest of all the shitty illnesses'. As a vulnerable person with a mental illness, Liz was not adequately seen, valued and supported by society. Mental health care is not only about responding to a crisis. It should also be about seeing the whole person, valuing them as someone who has a unique contribution to make and nurturing this. Most of the time this did not happen to Liz, due to stigma, not only about mental illness but in particular misconceptions about psychosis and schizophrenia.