New report highlights the daily suffering of individuals and families who are failed by services for schizophrenia or psychosis

Despite the progress in mental health awareness and advances in treatments, the lives of those affected by schizophrenia are not improving because services are ill-equipped to provide consistency of care, mental health charity SANE highlights in a new study.

According to Still forgotten - a report released today based on a survey of 423 people - those affected by schizophrenia or psychosis are not informed about local services, struggle to access crisis support and do not feel involved in decisions affecting their everyday life.

The survey respondents included a mixture of those with a diagnosis of schizophrenia or experience of psychosis, their family members or carers, as well as mental health or healthcare professionals who have cared for a person with schizophrenia. The survey featured 14 questions covering topics such as information received at diagnosis, awareness of risk factors and relapse indicators, and the availability of support services.

Worryingly, one of the key findings from the survey was that one in four healthcare professionals do not feel sufficiently informed about what service options are available for their patients. This is reflected in the lack of support that people with schizophrenia or experience of psychosis feel they are given; one in nine said they received no support service following their diagnosis.

Significantly, half said that they felt unsupported by healthcare professionals and 47% did not understand their options for treatment, including medication.

Marjorie Wallace, chief executive of SANE, says: “People with schizophrenia continue to be failed by a system that has never prioritised their care.

“Despite it being the single most challenging illness which, when untreated, can lead to fatal consequences such as suicide, homicide and neglect, schizophrenia does not receive the funds or resources needed to help those affected.

“We are disappointed by the NHS long-term plan which does not look like it will tackle severe and relapsing psychotic illness, instead focusing on the ‘softer’ end of the healthcare spectrum, such as prevention and lifestyle management. This does nothing to help people with a severe illness suffering an acute episode today.”

Staff shortages, funding not reaching the frontline and poor communication mean the experience of patients with the most severe mental illness is, too often, disorientating. A report by the All-Party Parliamentary Group on Mental Health published in October said: “Those who are the sickest often wait the longest to get help”.

One respondent to the survey echoes this sentiment, saying: “I’m fed up of having to ring and chase, I am not being supported in any way. I have not been offered any additional help, talking therapies or groups. If it wasn’t for my family I would have no support at all.”

Margaret Edwards, Director of strategy and communications at SANE, said, “The findings show that not being given adequate support and information are typical experiences for many patients with schizophrenia, especially at the time of diagnosis. Nor do families and carers receive enough information, guidance and help to enable them to support the person for whom they are caring.”

Indeed, it is not only those experiencing mental ill health that feel unsupported. The report also highlights that family members and carers can, in fact, feel more unsupported by healthcare professionals than patients themselves. Despite the major role this group plays, 61% said they felt unsupported.

Leigh Wallbank, Head of services at SANE, said, “Around a fifth of the people who contact our services at SANE are concerned about the people they care for with a mental health problem. One of the major issues these people face is the feeling of helplessness. Many family members can feel excluded from services and by professionals, and feel as though they are not involved in the care of the person they love.”

The aim of the Still forgotten report is to better understand what people living with schizophrenia consider to be priorities for their care, treatment and wellbeing. As part of this, SANE has made 10 recommendations on how care could be improved, to provide guidance to clinicians, NHS providers and policymakers on ways to ensure support is tailored to meet the needs of individuals, including family members and carers.

The recommendations include giving consideration to how inpatient and community teams could be reintegrated, where they have become separated; also, ensuring adequate funding is delivered to the frontline; and improving care planning consultation.

If you need some emotional support or some space and time to talk, you can call the SANEline on 0300 304 7000 every day of the year from 4.30pm to 10.30pm.

Alternatively, you may benefit from seeking professional support. Find an experienced counsellor or therapist near you by simply entering your location in the box below: