The Forgotten Illness – focus on schizophrenia

In 1986, journalist Marjorie Wallace wrote a series of campaigning articles in The Times about schizophrenia and other severe mental illness.

The articles were published under the title The Forgotten Illness.

They focused on misconceptions about mental illness, the anguish and neglect of sufferers and families, and the failures of the community care policy. 

The response to the articles at the time was the largest The Times had ever received on a home news subject. As a result of this Marjorie founded SANE.

Read ‘The Forgotten Illness’ articles in full at issuu.com/charitysane/docs/forgottenillness

Still Forgotten

Today, however, there are still far too many people with severe and enduring conditions, such as schizophrenia, who are unable to access treatment when they need it.

They may not know who to contact when in crisis, or may be unable to access a hospital bed. They may have no clear care plan, which can undermine what treatment they are able to receive.

On top of this, their families and those caring for them often feel excluded from decisions about their treatment, and are left to shoulder the day-to-day burden on their own.

Around one in a hundred people will have a diagnosis of schizophrenia. Our own research found that as many as one in nine people with schizophrenia or psychosis received no support following their diagnosis. And 61 per cent of family members and carers said they felt unsupported by healthcare professionals.

Struggling in silence

There has been a seismic shift in awareness of mental health, but it has not been matched by the availability of frontline care.

The experience of someone with a diagnosis of schizophrenia can be very different. Drug treatments aim towards helping a person manage their condition, and relapses can be more severe and long-lasting than they might be for someone with mild to moderate depression.

This means that holding down relationships, finding work, and living independently can by much more of a challenge. And it can be much more difficult to advocate to improve public understanding and demand better mental health services. All too often people with such a diagnosis, and their families, struggle in silence.

Awareness and acceptance

Over the years, all too often the most prominent coverage of schizophrenia in the media has been on those rare cases when someone with a diagnosis of schizophrenia has committed a terrible crime when deeply psychotic.

This has distorted public understanding and acceptance of the condition.

Some of the measures in the NHS Long Term Plan addressing mental health provision are welcome, but there is much still to be done particularly in the light of the ongoing Covid-19 pandemic.

We have lost almost half the psychiatric beds in England since 2000. Until we see the restoration of local beds for those in crisis or with severe and relapsing mental illness, people will continue to be discharged early, refused admission or treated out-of-area, and avoidable tragedies and loss of life will continue.

Schizophrenia is a serious illness and very difficult to endure. But it’s no one’s fault and there is no shame or blame.

With more awareness and acceptance, improved treatments and research there is hope life can improve for patients, their families and those who struggle unseen and unheard.

“More than 35 years ago I exposed the suffering and despair of people living with schizophrenia on the fringes of society. Little has changed and thousands still face neglect and under-treatment.

“Until we ensure there are sufficient local beds and address the desperate shortage of experienced, qualified nurses and doctors, people will continue to suffer in silence.”

Marjorie Wallace CBE, SANE Chief Executive.

Crisis support

Despite all the progress in mental health awareness and advances in treatments, the lives of those affected by schizophrenia have not improved enough, and in some cases cases are getting worse, because services are ill-equipped to provide consistency of care.

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 based on a survey of 423 people.

Key survey findings from the 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.

Patients’ experience

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 2018 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 made a number of 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.
• 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 the report was prepared by SANE, and was also 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)