Case study: Angie has taken part in an innovative digital therapy helping patients with paranoia in Sussex
Angie Culham, 55 from Durrington, in West Sussex has volunteered for various mental health studies run by Sussex Partnership Foundation Trust and for the past year she has taken part in a study which looks at a digital therapy for paranoia.
SlowMo is the first digital psychological therapies designed specifically for paranoia. Pharmacological treatments can have limited effect and this is a promising solution to help people manage their symptoms and have a better quality of life. The study volunteer has eight individual, face to face sessions with a therapist and is assisted by an app downloaded onto a mobile phone. Patients participating in the trial are given a phone to use. Using SlowMo, researchers work with the person to identify their worries, and then help them find ways to slow down and take a moment when they start to notice their worries. People try out tips to learn what helps them slow down their thinking and how to cope with worries. The mobile app supports the use of these strategies in daily life. The idea is that using the app to slow down and take another look at the situation, people can often realise that things aren’t as bad as they first feared or find other ways to manage their worries.
Angie has experienced psychotic symptoms for many years. She has tried all sorts of different therapies, and medications. Angie says: “When I was introduced to SlowMo I found it was such a good idea, a simple idea all about slowing your thoughts down and thinking things through. It really helped and I can say it has really changed my life.
“I don’t panic on the bus so much anymore and if I do, I look at the phone they gave me with the app on it. This has helped me to go out more socially. I used to think people were looking at me and talking about me but since using SlowMo I’ve managed to go out more, which is a really good thing. I do like people but the way my voices work made me think these things and made it difficult to go out”.
The digital support allows users to input distressing thoughts such as “They are laughing at me” or “I am being spied on” as many times as they need to. When they select this thought the user uses a slider linked to a thought bubble on the screen. The more distressing the thought, the larger the bubble becomes. The bubble then spins and encourages the user to “slow down” and it then asks a series of questions to which the user agrees or disagrees, such as “could the situation be due to chance?”
Angie is a Lived Experience Research Ambassador for Sussex Partnership NHS Foundation Trust and took part in a film created by students from the University of Sussex to raise awareness about mental health research. ‘Research: It’s everyone’s business’ features staff and service users from Sussex Partnership NHS Foundation Trust talking about the variety of research projects available for people to participate in and the impact research can have on shaping local mental health services. In April 2018 Angie also featured in a film about the SlowMo study on the BBC One Show. Angie says: “I found making the film interesting and it was a great opportunity to tell a large audience about the study and how it has helped me.”
Angie is also a Peer Trainer with Sussex Recovery College, where she meets and works with service users and clinicians to run an ‘understanding psychosis’ course. Angie says: “I am a service user myself, and have been for over 20 years. Because of this, I have seen many changes in the mental health system. I also help at Shepherd House Worthing, a small psychiatric hospital, where I run a hearing voices group. This is a chance to meet with service users and staff. I think it is very important to work together, and respect each other.
Angie says: “I would say to others to take part in research when it feels right to do so. Helping with research is great but it is important to look after yourself and keep taking your medication as prescribed. It is also important to keep seeing your community psychiatric nurse.
“Research has benefited me and will help others in the future. Without research there is no progress. I didn’t feel alone with my problems anymore. I felt like I was helping other people with similar problems; it did my confidence the world of good.”
*The SlowMo trial is being run by Sussex Partnership Foundation Trust and the University of Sussex, (and also at sites in London and Oxford) and is funded by the Efficacy and Mechanism Evaluation (EME) Programme, an Medical Research Council (MRC) and NIHR partnership. The project is led by Professor David Fowler and Prof Kathy Greenwood in Sussex and the overall project lead is Professor Philippa Garety at King's College London. If SlowMo is found to help people it will be made freely available on the NHS.