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“That happened to me too”: Emma’s story

If I was to name two things that need to change – for those with mental health needs and for those caring for them – I would say proper funding and training of staff. For early intervention, to prevent people reaching crisis point, to happen and to mean something.

To get my point across, I’d like to share my experience and the circumstances leading up to the point where I became a carer for my daughter. Now I need support as a carer because she needs support, but with the right approach this could have been very different.

My daughter was diagnosed with bipolar disorder in her early twenties, which later progressed into schizophrenia. She is now in her forties. Usually once a year she has psychotic episodes, but unfortunately, I don’t feel that we have been supported by Intensive Support Teams (ISTs). I wonder if her condition would have progressed to schizophrenia regardless of these circumstances, or if her condition could have improved with better support.

When someone you love has a diagnosis of mental illness, you live with it in the pit of your stomach because you don’t know what will happen day to day. My daughter is unable to trust anyone, she doesn’t trust doctors or the police, but she can present very well and masks things until she is in a very bad place.

Last year during lockdown, my daughter was living with friends and being monitored by the Intensive Support Team. They visited, but were told to leave, and shortly afterwards she went missing. I had no alternative but to phone the police, who took her into custody. My daughter’s experience of being handled by the police highlights a huge need for someone trained, within the police, to be made available to support women who are mentally ill. There needs to be someone who understands mental illness and can take a better, kinder approach.

One morning last year my daughter woke up and something dark came over her. I was out walking when I had a telephone call saying she had made an attempt on her life. The situation was serious; we didn’t know if (or how well) she would recover. She was airlifted to the Intensive Care Unit (ICU) at Southmead Hospital where she underwent major surgery. My daughter was placed in an induced coma to help her body recover from this trauma. When she came out of this coma, she came out in a psychotic episode. After hospital, she was sectioned at the Green Lane Hospital in Devizes.

During the discharge process from hospital, my daughter could have been sent to anywhere in the UK. They didn’t know where she would be sent. How would we have coped if she had been sent to Glasgow? Fortunately, she went to Devizes. I have always found the level of care there and at the Great Western Hospital to be good. My daughter is now receiving support from Chatsworth House, and the care coordinator and consultant psychiatrist have been excellent.

My daughter was diagnosed when in her twenties and now she’s in her forties. For the 1st time, it feels as though she is getting the treatment needed. However, would she have had this without such a serious episode? My daughter is currently living with me, and although there is now support, it is like walking on eggshells. She doesn’t like me speaking to anyone without her knowledge, but if she had another psychotic episode, I would have to take control despite this.

The impact on my own mental health has been huge. Many people don’t know about mental illness, or they judge people with mental illness. When it’s your child you think ‘did I do anything wrong?’ but looking back, I think this was always developing.

I have been offered self-care sessions, such as aromatherapy, but what I really want is for someone to listen. I think the new Mental Health Carers Group with Swindon Carers Centre will be key. It means a lot to be able to speak amongst people who really do understand. We all have very similar stories – different circumstances, but similar stories and experiences of services. When we first met, it was like a spark had been lit because we were saying ‘that happened to me too…’

I hope that this will be an opportunity to put our voices across. If Intensive Support Teams were required to undergo more training – to spend at least three months on a psychiatric ward before working in the local community – perhaps other families could be spared the level of horror experienced by my family and I. Knowledgeable intervention early on will only aid mental health services, the emergency services, organisations which are stretched for funding. There must be other people in my position who would also benefit from that.

The charity Samaritans is available – day or night, 365 days a year, to offer support if you (or someone you know) needs this. This includes support with suicidal thoughts. You can call them for free on 116 123, email them at jo@samaritans.org, or visit www.samaritans.org to find your nearest branch.