Julie Alfrey shares her tragic experiences

8 years ago, I had a full, noisy, happy, close knit family. All of my original family (parents and brother) lived nearby, and I had three beautiful children. Now there is just myself and my two surviving children. If it wasn’t for them, I doubt I’d be here either. My brother died first, at the hands of NHS mental health services, although they take no responsibility for anything but poor communication. He took his own life following a terrible experience with the very services I persuaded him to get help from. His 'decision' to take his life was heavily influenced by how the NHS treated him. I pursued a complaint that took 3 years for them to investigate, by which time we were outside the 3-year time limit to pursue a legal claim. Then in 2021, Covid struck and my dad died. In 2022, my beloved 22-year-old son died, again, at the hands of the NHS. He had undiagnosed heart failure and was very poorly for 2 weeks. During this time, we were sent away again and again with 'anxiety' despite abnormal ECG readings. I promised him that I would not let anything bad happen to him and would fight for them to listen. I advocated and asked all the right questions, but they weren't recording any of it. I was told every time I asked that I wasn't allowed to see his notes. If I had been allowed to see the notes, I would have known that they were ignoring all of the vital symptoms we were reporting and making huge ageist assumptions. The coroner found massive failings in care that led to his death just 4 weeks after his symptoms started. He could have been saved at so many points. Instead, they left his organs to slowly fail. My mum followed just 4 months later...unable to take any more of this cruel life. I have spent the last 8 years campaigning for change and talking to the NHS about the pivotal effect of poor communication on lives. My work with the mental health services for my brother amounted to a waste of time. It's on its knees. My determination to get good communication and transparent care for my son's short illness was fruitless. Not because I didn't try...but because we were lied to, and we were not allowed to see what was in his notes. He died scared and alone from heart failure, misdiagnosed as many things, anxiety amongst them. A 22-year-old with his life ahead of him. Our (his dad and I) experience of pursuing a complaint was painful and traumatic. The serious incident investigation was heavily biased and substandard. We were excluded initially until we insisted on executing our rights (only learnt through my previous experience with my brothers care). Two years on, we are still in the midst of a legal process. My family has been destroyed. My career is in ruins and my mental health is at rock bottom. My son is gone. My original family are gone. And we have been through hell because of the NHS. I am reading everyday about cases much like my own...where the NHS do not provide a system that listens and acts. They provide a system shrouded in secrecy and self-protection ,that we are not allowed to infiltrate. It desperately needs to change and spend money on prevention through communication rather than on clinical negligence claims for their victims.