Memorandum submitted by SANE (MH 49)

 

SANE

 

1. SANE is a UK-wide mental health charity established in 1986 with three objectives:

 

r to raise awareness and respect for people with mental illness and their families, improve education and training, and secure better services

r to undertake research into the causes of serious mental illness through The Prince of Wales International Centre for SANE Research

r to provide information and emotional support to those experiencing mental health problems, their families and carers through SANEline and SANEemail.

 

Reform of mental health law

 

2. SANE has campaigned for reform of mental health law, launching a Balance of Rights campaign calling for:

 

r a positive right to assessment, care and treatment for people suffering from a mental illness or disorder;

r families and carers to be given more rights to information, and involvement in key decisions;

r inclusion within the scope of mental health legislation of people diagnosed with a severe anti-social personality disorder.

 

3. SANE believes that legislation should provide a robust and enlightened framework within which individuals with a mental illness or disorder can receive timely and appropriate care and treatment, and their families and carers the information and support they need to fulfil their role. We do not believe in compulsion in any setting, except where a person poses a serious risk to themselves or others and there is judged to be no alternative.

 

4. We consider that it is unethical to deprive a person of his or her liberty if mental health services cannot provide clinically appropriate treatment. We believe that treatment can be compromised when it is provided on wards that are overcrowded, squalid, lacking in occupation and rife with aggression and street drugs, as so many are. For those who are especially vulnerable and fragile, particularly children and young people, detention in such conditions is unacceptable

 

5. SANE is a Core member of the Mental Health Alliance. We believe that the Bill as amended by the House of Lords contains considerable improvements, but we remain concerned that it gives no rights to assessment, care and treatment for people with a mental illness or disorder, or enhanced rights to information and support for families and other carers. While a few people may have their lives improved by supervised community treatment, the majority of those needing help will still be failed when beds, units, day centres, community and therapy services are being run down or closed.

 

Positive rights to assessment, care and treatment

 

6. It has been estimated that 1 in 4 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. We listen to an average 1,000 callers a week on our telephone support service, many of whom tell us that if they had been given help when they first sought it, before they became so ill that they denied their illness, there would have been less need for compulsion.

 

7. Despite the rhetoric of choice and diversity, in SANE's view there is for the vast majority of people no option to have in-patient care, time for rehabilitation, or a place of 'asylum' when stresses become intolerable, let alone consistent and reliable care in the community. Mental health law should be designed to prevent a person deteriorating to the point where they have to be detained against their will, and to protect them from neglect, self-harm and suicide. Without a duty being imposed on services, people will go undiagnosed and untreated or be put at risk of relapse.

 

Community treatment orders

 

8. Whilst we acknowledge the perceived fear of further coercion through the introduction of community treatment orders, from what families and carers tell us we believe that they and those they are caring for would welcome the possibility of supervised community treatment as preferable to being confined on understaffed wards and offering a more fulfilling life.

 

9. SANE believes that, with the restrictions to the scope and additional conditions attached to community treatment orders introduced by the House of Lords, they could provide release for some patients currently trapped in the revolving door between hospital and the community. But we fear that they could be used as a substitute for in-patient care, as a cheap option of keeping patients on a basic, un-reviewed medication regime and offering nothing or little else by way of therapy and other holistic care. We are also concerned that with the continuing impoverishment of many community services, some people being treated under community treatment orders could receive an inadequate and unsafe level of care and supervision.

 

Enhanced rights for families and carers

 

10. SANE believes that as well as safeguarding the rights of those with a mental illness or disorder, mental health legislation should respect and protect those of their families and carers who, day in and day out, support people close to them who are living with often severe mental health problems. In our experience, even in the most critical situations, families and carers are still denied essential information and involvement in key decisions, jeopardising the health of the person they are looking after and frequently their own.

 

11. Even where an individual would agree that a family member or carer should be given key information about his or her diagnosis, medication and care plan, health professionals can still believe that patient confidentiality precludes such information being disclosed. When patients are discharged from in-patient care, hospitals and Mental Health Review Tribunals can leave families and carers with no information, even though the individual may remain vulnerable.

 

12. The consultation document on the Mental Health Bill 2002 stated the following under the heading "Sharing information to improve patient care":

 

"Although consent from a patient for the sharing of information between agencies should always be sought, there are occasions when it is not given. In these circumstances, awareness of good practice in relation to information exchange is vital, to ensure that any risk of harm to the patient or others is not missed.

 

"Good information sharing to improve patient care can suffer because the rules governing confidentiality are misunderstood between professionals. There are also problems between agencies that may be wary of co-operating with each other, have different systems for storing information, or are governed by different statutes concerning its exchange in relation to health and risk, criminality, family and education matters.

 

"For these reasons we propose setting out in the Bill a general duty to co-operate in the supply of information in relation to risk management and assessment. We also propose a duty on professionals to consider thoroughly, as part of the care planning process, whether there is a need to share information.

".....The provisions in the Bill will be supported by guidance in the Code of Practice that will detail the general principles that should be followed on good information sharing."

 

13. The Report of the Joint Scrutiny Committee on the Draft Mental Health Bill (2004) stated:

 

"We appreciate that sometimes the relationship between patient and carer can be difficult, but we believe that in the majority of cases, it is in the interests of the patient and the carer that the carer is kept informed as to the patient's situation. Also, it is a two-way communication in the sense that the carer can provide background information which is crucial to the patient's care and treatment." The Committee recommended that there should be a presumption to consult a patient's carer when examinations and assessments are carried out, unless the patient is expressly opposed to it.

 

14. In its response to the Joint Scrutiny Committee, the Government said: "

 

"We recognise the important role that carers play in providing care and support for patients, and will explore ways in which the Bill and the codes of practice can be used to strengthen the presumption to consult carers."

 

15. We hope that this will be reconsidered. If no provisions are included in the Bill, we believe that the Code of Practice should give clear guidance on consultation and involvement of families and carers, and information about the patient's diagnosis and care plan. This would reflect the Government's own objectives and the recommendation of the Joint Scrutiny Committee.

 

 

Summary

 

1. SANE believes that mental health legislation should provide a robust and enlightened framework within which individuals with a mental illness or disorder can receive timely and appropriate care and treatment, and their families and carers the information and support they need to fulfil their role.

 

2. SANE considers that it is unethical to deprive a person of his or her liberty if mental health services cannot provide clinically appropriate treatment. We believe that treatment can be compromised when it is provided on wards that are overcrowded, squalid, lacking in occupation and rife with aggression and street drugs, as so many are. For those who are especially vulnerable and fragile, particularly children and young people, detention in such conditions is unacceptable

 

3. SANE is a Core member of the Mental Health Alliance. We believe that the Bill as amended by the House of Lords contains considerable improvements, but we remain concerned that it gives no rights to assessment, care and treatment for people with a mental illness or disorder, or enhanced rights to information and support for families and other carers.

 

4. SANE believes that, with the restrictions to the scope and additional conditions attached to community treatment orders introduced by the House of Lords, they could provide release for some patients currently trapped in the revolving door between hospital and the community. But we fear that they could be used as a substitute for in-patient care, as a cheap option of keeping patients on a basic, un-reviewed medication regime and offering nothing or little else by way of therapy and other holistic care.

 

5. SANE believes that if no enhanced rights for families and carers are included in the Bill, the Code of Practice should give clear guidance on consultation and involvement of families and carers, and information about the patient's diagnosis and care plan.

 

 

Annex

 

SANE campaigns to combat stigma and ignorance and improve care through extensive media activity and participation in a wide range of government, professional and service initiatives. Central concerns are suicide and self-harm; the loss of psychiatric beds, unacceptable conditions in psychiatric units, and the impoverished nature of much in-patient care; the lack of coherent, responsive community services; and the links between cannabis and mental illness.

 

SANE is unique among 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, health professionals and the public.

 

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. SANE's call-back service, Caller Care, provides support to callers at times of crisis and further need. SANEline is the only out of hours mental health helpline open every day of the year throughout the UK. 1 in 10 callers who say they have a care plan have SANEline written into it.

 

As well as the SANEmail service launched in March 2007, SANE responds to mental health and related issues and concerns raised by young people on askTheSite, an internet support service for young people run by YouthNet UK. The charity also provides a discussion board on its website, to enable people to share their thoughts and feelings and provide mutual support to anyone experiencing mental health problems, including friends, families and carers.

 

SANE undertakes both routine and targeted analysis of anonymised data provided by callers to SANEline. This analysis draws on a database of over 400,000 records of information on the needs and experiences of those affected by mental health problems. In addition, SANE undertakes specific research projects, the results of which are published in professional and service journals and has a growing database of views expressed by people completing surveys on the SANE website. Recent research has examined the experience of relapse in enduring mental illness and the identification and management of depression by general practitioners.

 

This social research offers a unique source of information on mental health services, and the needs and experiences of service users, their families and carers, informing SANE's campaigning and contribution to policy development.

 

April 2007