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14 Feb 2019

Focus on schizophrenia: the forgotten illness again

Despite all the progress in mental health awareness and advances in treatments, the lives of those affected by schizophrenia are only getting worse because services are ill-equipped to provide consistency of care – the charity SANE is highlighting in a new study.

People 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, according to Still Forgotten, a report released today based on a survey of 423 people.

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.”

the forgotten illness

Key survey findings from the Still Forgotten report include:

  • One in nine people with schizophrenia or experience of an episode of psychosis received no support service following diagnosis.
  • Family members and carers feel more unsupported by healthcare professionals than patients themselves. Despite the major role this group plays, 61% said they felt unsupported.
  • One in four healthcare professionals did not feel sufficiently informed about what service options are available for their patients.

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 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.”

As part of its report, SANE has made 10 recommendations on how care could be improved, including: giving consideration to how inpatient and community teams could be reintegrated, where they have become separated; ensuring adequate funding is delivered to the frontline; and improving care planning consultation.

About the survey

This survey was co-created by Otsuka-Lundbeck and SANE, and sponsored by Otsuka-Lundbeck. The content of this report was prepared by SANE, and has also been used to inform Head Start, a practical, educational and motivational support programme for people with schizophrenia for implementation through NHS services.

A total of 423 people took part in the survey: 231 respondents had a diagnosis of schizophrenia or experience of psychosis; 161 were family members or carers of people affected; 56 were healthcare professionals; and nine participants were answering on behalf of someone else. People were able to identify themselves as a member of more than one group. The survey was carried out online between June and October 2017.

Download the Still Forgotten report (PDF, 3.9MB)

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