Feedback from ISPS UK Members

ISPS is fortunate to have members from a range of backgrounds, including: people with lived experience of psychosis, carers, family members, nurses, psychiatrists, voluntary sector workers, therapists, psychologists, occupational therapists, social workers and many more.

The following includes examples of some of the feedback we have received from members – in response to anonymous surveys as well as feedback received spontaneously by email or post.

Feedback from a family carer:

“I have found informed support, friendship and humanity in ISPS since my first meeting at a time when mainstream mental health services were uncommunicative, both suspicious and dismissive of me – all reactions quite shocking at a time of extreme distress.

The contrast with the empathy of ISPS could not have been sharper. ISPS, its committee and its general membership, has been a lifeline at the most difficult times since, when otherwise, I felt completely isolated.

I am passionate about challenging and changing mainstream psychiatry; it needs to show understanding and to commit to listening to and working collaboratively with service users, their peer groups and families to restore a valued life of genuine quality to everyone traumatised into and by mental health distress and practices. This will be best achieved by implementing the proven enlightened approaches, policies and research undertaken by ISPS and similarly more humane organisations.

The commitment of those who have come through personal mental health crises and now travel extensively helping others through their difficulties and those who have subsequently become professionally qualified as psychologists joining the challenge to the mainstream orthodoxy is also inspiring”.

 A family carer

Feedback from someone with lived experience of psychosis:

“When I was diagnosed with schizophrenia I was, effectively, consigned to the scrapheap. Despite my history of trauma, no-one felt brave enough to tackle this with me directly. I was deemed unsuitable for psychotherapy because of my trauma and all I got was a lousy CBT booklet helping me make sense of my anxiety. Those few nurses, OTs and support workers who were interested in the content of my voices and visions – and wanted to understand their meaning – were quickly shouted down by a culture that deemed them pathological. I was one of those voices too – having learnt about my ‘illness’ I no longer wanted to talk about them or understand them. I wanted a pill to make them go away.

ISPS, in my view, exists to change this culture – showing that psychological therapies can be used safely for people who, like me, struggling with overwhelming realities. Peer support, attachment based psychoanalytic psychotherapy, humanistic therapy, art therapy and the nourishment of human connection found in the voluntary sector have been essential parts of my recovery journey and helped me take back my life from a diagnosis that no longer defines me.

ISPS UK is a melting pot of different ideas, background, perspectives and practice. There are few places that someone, like myself, can engage in a lively respectful debate about different ways of conceptualising psychosis with a psychiatrist, therapist and psychologist over after-dinner drinks. Last year’s Residential Conference gave me this opportunity and, at that moment, it struck me that ISPS is searching for an equality and dialogue that is all too often missing in mainstream mental health care”.

Person with lived experience of psychosis