A carer's story
In this blog, we hear from Faith about her experience as a carer for her son and how she supports carers at the Trust.
"I’ve been a carer for my son for about six years. He was taken ill in 2012 and spent a couple of months in the Ladywell Unit. He’d had a first episode of psychosis and was almost 21. He wanted to be home for his 21st birthday and he made that. At the moment my son is doing very well; he enjoys cycling and is more active and sociable than he has ever been. It was my mum’s 90th birthday party recently and he was dancing with her!
"When my son was under the care of South London and Maudsley I found it very helpful to talk to others in the same position. He was seen by the Early Intervention team and they had set up a carers’ group. It was a six-week programme – one week a pharmacist came and we asked questions about different medications. Another week we focused on how to communicate with the person you’re caring for – that was really useful. Another session was about how it’s OK to look after yourself and do things that are away from your caring responsibilities.
"I co-facilitate a monthly carer group with clinical staff at Lewisham Early Intervention team. It’s really useful because we learn from each other and it’s a safe space. It reminds carers that they’re not the only one going through this. One of the carers said recently: “My son was away for the weekend and I was so relieved!” She felt comfortable to say that in the carers group but she might not have elsewhere. Everyone said: “Oh yes, we know how that feels”.
"I was told about the trust’s Involvement Register by my son’s care coordinator. After speaking to my son, she said 'Now I’ve come to see you Faith. I’m going to go through how you’re coping and what you’re doing for yourself'. Carers and service users can be part of the Involvement Register. It’s really good, it gets you out of the house and you get to see the workings of the organisation. It’s paid and you can learn transferable skills.
"I’ve done so many different things through the Involvement Register. I’ve had recruitment and selection training and been on interview panels, including for a deputy director. I’ve been involved in focus groups on different topics and asked for my views on the care plan approach. I was also filmed as part of the trust’s recent suicide prevention film.
"I regularly speak at the Trust Values Day for new staff. People thank me for sharing my story and making them think. I talk about being aware that you’re dealing with a person and their family, and being mindful that the situation could have caused quite a shock within the family. Recently I was invited to meet a group of clinicians from Bangladesh. I told to them about our carers’ group and how carers are involved at the Trust.
"When my son was taken ill, I felt like it was the worst thing. But actually I’ve met so many people who have made a positive difference to my son’s life, his brothers and my life."
