Survey finds NHS services keep users in the dark and without a proper say

Campaigners have called on the NHS to give mental health service
users more information and a bigger say in care and treatment after
a survey found they were ignored.

The issue was one of the main findings from a survey of 300,000
patients from 568 English NHS trusts by the Healthcare Commission.
As well as mental health services, patients were asked about the
standard of adult inpatient, paediatric, primary care and ambulance

In particular, many service users wanted more information about the
side effects of drugs, their rights under the Mental Health Act
1983 and their diagnosis, with greater involvement in care planning
and their medication regime.

About 15 per cent wanted more say in their own care and treatment,
and one in five wanted more say in their medication.

The survey also found that a quarter of the 8 per cent of
respondents who had been detained under the Mental Health Act in
the previous 12 months, felt they had not had their rights
explained to them. One service user said: “I was rushed to hospital
and sectioned. Nothing was explained to me. I was uncertain where I
was and very scared.”

Service users complained about seeing too many different
psychiatrists, which means they have to repeat themselves and have
little opportunity to form a good relationship. More than half did
not have the phone number of a mental health services professional
who they could call out of office hours.

The survey also found more than half of respondents had been in
contact with mental health services for more than five years. A
fifth were in paid work, almost a third lived alone, while a
quarter cared for children.

It adds that the NHS should address the social needs of people with
mental health problems as well as their clinical conditions.

Paul Burstow, Liberal Democrat health spokesperson, argues that
some of the most vulnerable patients have no say in how they are

“Patients want real control over their health and their health
care,” he says. “They should be involved in decisions made about
their care and given the information and support they need to help
them make these decisions.”

Margaret Edwards, head of strategy at Sane, says it is “completely
unacceptable” that so many mental health service users are not
given information critical to managing their illness.

She adds that the findings, along with the recent star ratings of
mental health trusts, show that in many parts of the country the
NHS is “still failing to provide the fundamentals of mental health

Mental health charity Mind says the findings are just “the tip of
the iceberg”. Chief executive Richard Brook says a
soon-to-be-released Mind survey of mental health in-patients will
show that one in four rarely feel safe in hospital, just a fifth
feel they are treated with dignity by staff, and more than a half
believe hospitals’ environments do not help their recovery.

“Mind’s work suggests people get even less information about their
diagnosis and treatment than this survey suggests,” warns Brook.
“Even worse, we know many people are not getting even basic
protection from harassment and abuse or access to help when they
need it.”

National Patient Survey from

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