The carer

 

"I saw the coverage of the report on the news and the first thing I felt was just so sad."

Not just for the victims and their families, although of course it must have been indescribably traumatic for them, but also for the service users and their families. They had all been let down.

Thankfully nothing so serious has happened to me but I have been caring for my son for 16 years. He has schizophrenia and is what you might call a revolving door patient; he’s been sectioned 12 times.

One of the families said they had been asking for help for a long time. I felt so incredibly sorry for those people. I thought that could have been our family. We have been in that position many times, but luckily our care coordinator listened to us.

I felt guilty about the feelings I had but my perspective was from the service user’s point of view. I have been in that position, I have been assaulted by my son lots of times, I’m reluctant to go to the police because I know he’s not bad he is just ill but I know my safety is important too. It is such a fine balance to get right.

When I realise my son’s beginning to get unwell my heart sinks every time. I know him so well that I can tell he is becoming  delusional just by the way he walks. I know when he has stopped taking his medication.

Seeing someone you love go through that, it’s like watching them die in front of you. It’s such a dangerous time , we are at risk, he is at risk and the general public is at risk.

I remember professionals telling me he was not ill enough to be admitted to hospital. I’d have to wait for him to get worse. It really is the worst of all the times, that is the time I feel the most frustrated, no one is listening, there is all this evidence. I know we have got a 12 week window from when my son stops taking his medication to when he is going to be really unwell. I know that now just from all the times he has been sectioned. In this aspect of his illness I have the expertise; that is the message clinicians need to hear.

I have learned to start writing a crisis diary as soon as I think he is becoming unwell. I just bullet point things that he has said that are odd, that start to ring alarm bells. For example his vocabulary changes, he gets into low level trouble in the pub, he takes a bus to Gatwick and stays there all night. I can send this to my care coordinator and that gives her the evidence she needs to intervene, and often the care coordinator is the gate keeper to interventions.

I think I became very skilled at saying to people I know you can’t comment on this but you are going to listen to what I’m telling you and that has worked, with my GP, with others. Carers should be told to do that and be confident. Often we are not.

 

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