DMH 374 Memorandum from SANE
SUMMARY
SANE has three objectives:
- to raise awareness and respect for people with
mental illness and their families, improve education and training,
and secure better services
- to undertake research into the causes of serious
mental illness through The Prince of Wales International Centre
for SANE Research
- to provide information and emotional support
to those experiencing mental health problems, their families and
carers through SANELINE.
Reform of mental health law
2. SANE has campaigned for reform of mental health
law, to reflect the fact that the majority of people with mental
illness are now cared for in the community. Through a Balance
of Rights campaign launched in 1996, we have called for:
- a positive right to assessment, care and treatment
for people suffering from mental illness or disorder;
- families and carers to be given information and
involved where appropriate in key decisions;
- removal of the treatability test in the Mental
Health Act 1983 for those diagnosed as suffering from personality
disorder.
Response to 2004 Draft Mental Health Bill
SANE does not have the resources to comment
on the drafting of the Bill. Instead, we wish to focus on whether
the proposals provide a robust and enduring framework within which
individuals with mental illness or disorder could receive timely
and appropriate care and treatment, and their families and carers
the information and support they need to fulfil their role. We
wish to concentrate on the following questions posed by the Joint
Committee.
Question 1: Is the Draft Mental Health Bill rooted in a
set of unambiguous basic principles? Are these principles appropriate
and desirable?
4. SANE is opposed to any legislation that would
provide for indefinite detention of people diagnosed with personality
disorder who were deemed to pose a risk to themselves or other
people. We believe that this group should come within the ambit
of mental health legislation but that they should be treated no
differently than others, meeting the same conditions and criteria
of risk necessary for the use of formal powers.
5. SANE welcomes the statement that it will not
be possible for someone to be under compulsion in the community
without assessment in hospital on a previous occasion, and that
the expectation is that the majority of patients under compulsion
at any one time would be in hospital. We think it important to
have clarification of what is proposed, in particular whether
there would be any circumstances in which it would be permitted
for patients to receive compulsory treatment outside hospital.
Question 3: Does the draft bill achieve the right
balance between protecting the personal and human rights of the
mentally ill on one hand, and concerns for public and personal
safety on the other?
6. The personal and human rights of those with mental
illness or disorder are fundamental and must be fully protected.
Any true reform of mental health law must provide not just protection
for the public but for people who may be so ill that they do not
know or deny the risk they present, to themselves far more frequently
than to others. Any compulsion on an individual must be in order
to protect him from the worst ravages of his illness and must
be backed by humane care and treatment.
7. SANE believes that as well as safeguarding the
rights of those with mental illness or disorder, mental health
legislation must respect and protect those of their families and
carers and the wider community. We do not consider that the Bill
meets adequately the information needs of families, carers or
the public. We would like consideration to be given to how the
Bill itself and the Code of Practice could improve on what is
presently proposed.
Question 4: Are the proposals contained
in the Draft Mental Health Bill necessary, workable, efficient,
and clear? Are there important omissions in the Bill?
8. SANE believes that the key proposals are necessary
to provide treatment and care for those whose mental illness or
disorder may place them at risk. We are concerned that the proposals
will not be workable without significant increases in the numbers
of trained staff and appropriate beds and supervised accommodation
in the community. The central omission in the Bill is the lack
of a duty to provide an assessment of an individual's mental health
needs if one is requested, and care and treatment when it is needed.
Question 10: What are likely to be the human and
financial resource implications of the draft Bill? What will be
the effect on the roles of professionals? Has the Government analysed
the effects of the Bill adequately, and will sufficient resources
be available to cover any costs arising from implementation of
the Bill?
9. SANE has major concerns about the human and financial
resource implications of the proposals. We consider that with
the proposals for new tribunals, psychiatrists and other professionals
will be diverted even further away from front-line patient care.
Before proceeding with a Bill, we would like the Government to
publish a statement on the resource consequences and costs of
all the proposals, with a programme and timescale for how they
would be met.
SANE submission to the Joint Scrutiny Committee on the Draft
Mental Health Bill
Introduction
SANE has three objectives:
- to raise awareness and respect for people with
mental illness and their families, improve education and training,
and secure better services
- to undertake research into the causes of serious
mental illness through The Prince of Wales International Centre
for SANE Research
- to provide information and emotional support
to those experiencing mental health problems, their families and
carers through SANELINE.
Annex 1 gives more information about SANE and its activities,
Annex 2 about SANELINE.
Reform of mental health law
3. SANE has campaigned for reform of mental health
law, to reflect the fact that the majority of people with mental
illness are now cared for in the community. Through a Balance
of Rights campaign launched in 1996, we have called for:
- a positive right to assessment, care and treatment
for people suffering from mental illness or disorder;
- families and carers to be given information and
involved where appropriate in key decisions;
- removal of the treatability test in the Mental
Health Act 1983 for those diagnosed as suffering from personality
disorder.
SANE's response to the 2002 Draft Mental Health Bill is
at Annex 3.
Response to 2004 Draft Mental Health Bill
As a Core Member of the Mental Health Alliance
SANE shares its objectives for new mental health legislation,
although our views on the 2004 Mental Health Bill differ in emphasis
in some areas. We do not as an organisation have the resources
to comment on the drafting of the Bill. Instead, we wish to focus
on whether the proposals provide a robust and enduring framework
within which individuals with mental illness or disorder could
receive timely and appropriate care and treatment, and their families
and carers the information and support they need to fulfil their
role. We wish to concentrate on the following questions posed
by the Joint Committee.
Question 1: Is the Draft Mental Health Bill rooted in a
set of unambiguous basic principles? Are these principles appropriate
and desirable?
6. We note and support the intentions for the Bill
stated in Figure 2 of "Improving Mental Health Law",
in particular the following:
- "The Bill does not introduce a new power
of indefinite detention for people with mental disorder who pose
a risk to public safety nor does it introduce a new power of "preventive
detention."
- "Patients in the community who are ill
and vulnerable will get the treatment they need. The Bill will
restrict the initial use of formal powers in the community, to
make sure that they are not used inappropriately."
- "Forced treatment at home is not, and
never has been, permitted under the Bill"
7. SANE's views on dangerous people with personality
disorder and on compulsory treatment are set out in Annex 3. The
intentions referred to in paragraph 6 above must, in our view,
be reflected in provisions in the Bill, and the Code of Practice
if relevant, which are entirely clear both to those operating
the legislation and those who might be affected by them.
8. We are opposed to any legislation that would
provide for indefinite detention of people diagnosed with personality
disorder who were deemed to pose a risk to themselves or other
people. We believe that this group should come within the ambit
of mental health legislation but that they should be treated no
differently than others, meeting the same conditions and criteria
of risk necessary for the use of formal powers.
9. We welcome the statement in Table 1 of "Improving
Mental Health Law" that it will not be possible for someone
to be under compulsion in the community without assessment in
hospital on a previous occasion, and that the expectation is that
the majority of patients under compulsion at any one time would
be in hospital. We are unclear, however, how this sits with the
statement in Figure 2 that "under no circumstances is forced
treatment outside hospital permitted." We think it important
to have clarification of what is proposed, in particular whether
there would be any circumstances in which it would be permitted
for patients to receive compulsory treatment outside hospital.
Question 3: Does the draft bill achieve the right
balance between protecting the personal and human rights of the
mentally ill on one hand, and concerns for public and personal
safety on the other?
10. We believe that the difficulty in striking this
balance has been at the heart of concerns about the reform proposals.
The article at Annex 4 by SANE's Chief Executive, Marjorie Wallace,
written in November 2002, sets out our arguments and concerns
more fully.
11. The personal and human rights of those with mental
illness or disorder are fundamental and must be fully protected.
Any true reform of mental health law must provide not just protection
for the public but for people who may be so ill that they do not
know or deny the risk they present, to themselves far more frequently
than to others.
12. Any compulsion on an individual must be in order
to protect him from the worst ravages of his illness and must
be backed by humane care and treatment. This means care provided
to proper standards, not as is so often the case now in squalid,
overcrowded wards where there are far too few doctors and nurses,
minimal therapy, and no meaningful occupation. Treatment under
compulsion outside hospital would only work if matched by huge
increases in community services.
13. SANE believes that as well as safeguarding the
rights of those with mental illness or disorder, mental health
legislation must respect and protect those of their families and
carers and the wider community. In our experience, even in the
most critical situations families and carers are still denied
essential information that could prevent unnecessary suffering
and tragedy.
14. Even where an individual would agree that a family
member or carer should be given key information about his diagnosis,
medication and treatment plan, health professionals can still
believe that patient confidentiality precludes such information
being disclosed. When patients are discharged from hospital, hospitals
and Mental Health Review tribunals can leave families and carers
with no information, even though the individual may remain vulnerable.
15. We do not consider that the Bill meets adequately
the information needs of families, carers or the public. We would
like consideration to be given to how the Bill itself and the
Code of Practice could improve on what is presently proposed.
Question 4: Are the proposals contained
in the Draft Mental Health Bill necessary, workable, efficient,
and clear? Are there important omissions in the Bill?
16. We believe that the key proposals are necessary
to provide treatment and care for those whose mental illness or
disorder may place them at risk. As indicated in Annex 1, we are
concerned that the proposals will not be workable without significant
increases in the numbers of trained staff and appropriate beds
and supervised accommodation in the community. The central omission
in the Bill is the lack of a duty to provide an assessment of
an individual's mental health needs if one is requested, and care
and treatment when it is needed.
17. It has been estimated that 1 in 3 people are
turned away when they or their families seek help. People can
wait several months to see a consultant psychiatrist and up to
18 months to see a counsellor or therapist. In these circumstances,
a person's illness may deteriorate to the point where he may deny
the need to seek treatment voluntarily and compulsion may be the
only option. Without imposing a duty on services to respond to
meet all identified need, we fear that scarce resources will be
devoted to those considered to present a risk, allowing equally
ill people who do not to be turned away. We wish to see the burden
of compulsion placed on services, not individuals, providing rights
to care and treatment to ensure that compulsion is a last resort
rather than an increasingly unavoidable first necessity.
Question 10: What are likely to be the human and
financial resource implications of the draft Bill? What will be
the effect on the roles of professionals? Has the Government analysed
the effects of the Bill adequately, and will sufficient resources
be available to cover any costs arising from implementation of
the Bill?
18. As indicated above, we have major concerns about
the human and financial resource implications of the proposals.
Because of shortages of beds and qualified staff, mental health
services are already failing to provide necessary care and treatment
and in some areas, we believe, facing breakdown. We consider that
with the proposals for new tribunals, psychiatrists and other
professionals will be diverted even further away from front-line
patient care. Without the necessary resources to cater for these
increased requirements, in this respect too those mentally ill
or disordered people not considered to present a risk are likely
to be sacrificed in favour of those who are.
19. Before proceeding with a Bill, we would like
the Government to publish a statement on the resource consequences
and costs of all the proposals, with a programme and timescale
for how they would be met.
Annex 1
SANE
1. SANE is a UK-wide charity established in 1986
to improve the quality of life for people affected by mental illness,
following the overwhelming public response to a series of articles
featured in The Times entitled The Forgotten Illness. Written
by Marjorie Wallace, the organisation's Founder and Chief Executive,
the articles exposed the neglect of people suffering from enduring
mental illness and the poverty of services and information for
individuals and families.
2. SANE has three objectives:
- to raise
awareness and respect for people with mental illness and their
families, improve education and training, and secure better services
- to undertake research into the causes of serious
mental illness through The Prince of Wales International Centre
for SANE Research
- to provide information and emotional support
to those experiencing mental health problems, their families and
carers through SANELINE
3. SANE campaigns to combat stigma and ignorance
and improve care, giving nearly 200 interviews each year on national,
regional and local television and radio, generating thousands
of column inches in the press, and participating in a wide range
of government, professional and service initiatives. Major issues
spearheaded by SANE have been the restoration of psychiatric beds
and the provision of support in the commmunity, access to the
newer 'atypical' medications, and the links between cannabis and
psychosis. Recent campaigns have highlighted prevention and care
for those at risk of suicide and self-harm.
4. SANE is unique amongst UK mental health charities
in investigating the causes of serious mental illness at The Prince
of Wales International Centre for SANE Research in Oxford. The
Centre, an international forum for discussion in the field, aims
to establish the causes of and better treatments for schizophrenia
and bipolar disorder, and to disseminate education, awareness
and information to scientists and the public.
5. SANE provides care through its national telephone
helpline, SANELINE which offers emotional support and crisis care
to individuals, families and carers affected by mental illness,
health professionals, other organisations and members of the public.
SANELINE's 200 supervised volunteers have undertaken extensive
training endorsed by the Royal College of Psychiatrists and respond
to callers from helprooms in London, Bristol and Macclesfield.
SANE's call-back service Caller Care provides support to callers
at times of crisis or further need, operating during office hours,
evenings, nights and weekends.
6. Annex 2 provides more information about SANELINE.
Annex
2
SANELINE
1. SANE was the first organisation to pioneer a
national mental health helpline. Established in London in 1992,
SANELINE was initially open only during weekends and daytime hours,
but by the mid-1990's offices had been opened in Bristol and Macclesfield
and it was the only national, out of hours helpline networking
callers into the whole range of information and services. It is
now open from 12 noon to 2.00am every day of the year, and apart
from Samaritans in relation to suicide and depression, SANELINE
is the only helpline currently able to provide comprehensive,
out of hours coverage for everyone with mental health problems.
Who SANELINE helps
2. SANELINE offers emotional support, crisis care
and detailed information to those experiencing mental health problems,
their families and carers, health and other professionals, and
all organisations dealing with people affected by mental illness.
3. SANELINE's 200 highly trained volunteers - providing
21,500 volunteer hours a year - handle an average 1,000 calls
a week. 87% of calls are from people with mental health problems,
11% from families and carers, and 7% from health professionals
and others. 22% of calls are from first time callers.
4. 14% of callers believe that local services are
not meeting their specific needs, 9% that relevant services do
not exist. 6% of callers are not aware of relevant local services,
and another 6% are in contact with services but want additional
help. 3% of callers believe that services are not available when
needed. We are becoming increasingly aware that SANELINE is being
included in individuals' care plans as a source of information
and support.
5. 20% of callers talk of suicide or self-harm,
26% of these having attempted suicide previously and 11% in the
act of suicide at the time of the call.
6. Most callers do not have just one problem, but
clusters. The vision is to filter out individuals' needs, work
with them to find the most relevant help, and guide them through
the labyrinth of information and services. The aim is to provide
a one-stop service, giving callers all the information they need
in one call, including those with needs in more than one place.
The core is the SANELINE Information Database (SID) containing
over 17,800 records on statutory, voluntary and independent local
and national services and information on mental health law, treatments
and therapies.
SANELINE's Caller Care service provides support to callers
at times of crisis or further need. Staffed by trained mental
health workers, it operates during office hours and also provides
out of hours and weekend cover. Nearly 4,500 hours a year are
currently available for this service, over and above those available
for the helpline. SANELINE is the only mental health helpline
that offers such a service.
Data analysis
8. SANE undertakes regular analysis of anonymised
data provided by callers to SANELINE, and other studies based
on random samples of calls. This
provides a continually updated database of 350,000
calls - which we believe to be the biggest sample in the country
of the views of mental health service users and members of the
public. We also have a growing database recording views expressed
by people completing surveys on the SANE website.
9. The analysis of calls to SANELINE provides a
unique source of information on mental health services and the
needs of users and carers, informing SANE's campaigning and contribution
to policy development. SANE also undertakes dedicated research
published in professional and service journals, studies in recent
years including the needs and experiences of 13,000 carers calling
SANELINE, a survey of 22,000 calls from and about young people,
an analysis of over 4,000 callers who self harm, and a retrospective
analysis of psychiatrists' views of mental health services.
Annex 3
SANE's response to draft Mental Health Bill
What SANE has campaigned for
SANE has campaigned for reform of mental health law,
to reflect the fact that the majority of people with mental illness
are now cared for in the community. Through a Balance of Rights
campaign launched in 1996, we have called for:
- a positive right to assessment, care and treatment
for people suffering from mental illness or disorder;
- families and carers to be given information and
involved where appropriate in key decisions;
- removal of the treatability test in the Mental
Health Act 1983 for those diagnosed as suffering from personality
disorder.
Compulsory treatment
SANE does not believe in compulsion in any setting,
except where an individual poses a serious risk, and there is
judged to be no alternative. Early intervention on first onset
of mental illness, or to prevent relapse, is much the best way
of providing care and treatment and avoiding the need for compulsion.
If compulsion has to be used, SANE believes that treatment should
only be administered in a hospital or equivalent clinical setting,
to allow for full, on-going monitoring of the patient's physical
and mental condition.
SANE would like to see all patients given the opportunity
to agree to compulsory treatment in specified circumstances, and
to express their wishes about how they would like it to be administered,
through an advance directive.
Wherever compulsory treatment is given, there must
be the fullest safeguards for the individual, to protect his/her
rights and dignity.
Dangerous people with severe personality disorder
SANE has campaigned for recognition of the needs
of people with severe personality disorder, believing that they
should have the chance of specialist help. The very fact that
there is confusion over diagnosis, and no reliable risk assessment,
makes it all the more important in SANE's view that this group
- some of whom can pose the greatest risk to themselves and others
- should not be neglected. SANE believes that services should
be provided which can offer specialised management, separately
from those for people with mental illness, in a non-punitive environment.
SANE does not believe in long-term detention for
a person who has not committed an offence. People diagnosed with
severe personality disorder should only be detained following
a full professional assessment, which should be reviewed regularly.
The criterion for detention should be the level of risk an individual
poses, as with all others subject to detention under mental health
legislation.
People with severe personality disorder should have
the same safeguards as anyone else subject to detention under
mental health legislation.
SANE's response to draft Mental Health Bill
As a Core Member of the Mental Health Alliance, SANE
shares most of the concerns set out in the Alliance response to
the draft Mental Health Bill presented to the Secretary of State
on 16 September. SANE's chief concerns about the draft Bill are:
- It does not include any positive rights to assessment,
care and treatment. Without such rights, or a duty imposed on
services, service users and carers would have no levers with which
to obtain assessment and treatment. With the acute pressures on
mental health services, and manpower shortages in all specialties,
people would continue to be denied help. With increased powers
of compulsion, there would be a greater risk that patients would
turn away from professional help, leading to a negative spiral
in which compulsion became the only option.
- It does not include a requirement for assessment
or treatment under compulsion to be provided in a hospital or
any clinical setting, going against repeated Ministerial pledges
that compulsory treatment would be provided in a proper setting.
It would be quite wrong for patients not to have the dignity,
privacy and clinical protection of a hospital or other clinical
setting for either voluntary or compulsory treatment. The lack
of such provision would be a powerful deterrent to patients seeking
treatment or remaining compliant.
- It does not include an enforceable right for
patients to have their wishes taken into account through advance
directives.
- Whilst welcoming the additional safeguards provided
by the new tribunals, we are concerned that they could divert
scarce financial and staff resources from front-line patient care.
We are also concerned that the huge addition to the workload of
tribunals could get in the way of effective, timely decision making
in the interests of patients, and that if they were not properly
resourced there could be even longer delays in hearings.
SANE welcomes the provision for a right to information
about the management of mentally disordered offenders for victims
and families of victims.
SANE is concerned about the omission of critical
rights in the draft Mental Health Bill. But we are as much concerned
that the poverty of mental health services, and the lack of trained
staff and available, appropriate beds and supervised accommodation,
would give new legislation little chance of proper implementation.
A new Mental Health Act is needed to improve access to care and
treatment and provide greater safeguards. In proceeding with a
Bill, SANE believes that government should give a commitment that
it will seek to ensure that the trained
staff, beds and services are in place, without which it would
be meaningless.
| 
