• 'an advocate would ensure that there is provision for the client's views to be heard'
• 'basically advocacy and advice away from the intimidating environment and assurance that the advocate will remain on the side of the patient and be present or on call at all important decision-making times'
• 'involvement of advocate and strengthening the duty of staff to report to the consultant any sign that the person is not freely consenting'
• 'independent advocacy will ensure that all options for treatment are considered'

• 'carers may be able to monitor user's rights in some cases. Certainly the service user should have a 'concerned adult' present when they disagree with the treatment-awkward but only fair'
• 'relatives should be involved where consent is not freely given'

• 'patients should have the best drugs available. Their views should be taken into account if they object if they object to a particular drug and ask for a similar but less debilitating drug unless there is real clinical objection. Only a patient truly knows/experiences the full effect of anti-psychotic drugs'
• 'right to refuse ECT if person peaceable'
• 'no one should be discharged without having accommodation arranged and that should not be bed and breakfast accommodation. Need more help with finance budgeting, savings, benefits'
• 'more monitoring of vulnerable patients by MWC, more information on rights and consent should be given to users and carers'

• 'they should not lie or con the patient. It is counterproductive'
• 'how long is a person truly a voluntary patient?'
• 'should be a basis of trust with no threats e.g. person being told they'll be compelled to stay in hospital for 6 months, 1 year etc'
• 'pressure should not be put on to accept ECT etc. The answer "No " should be respected'
• 'if person is in a reasonable state of mind, they should not be forced by a threat of sectioning'
• 'all consent to treatment should be in writing'
• 'professional training should show that blackmail is wrong. Time should be given to build up trust'
• 'should be time for user to come to terms with their immediate situation and their vulnerable position'
• 'people should be allowed 'thinking time' away from professional pressure to do something'

7 ADVOCACY

The 1st response showed that many people favoured a right to advocacy. Comments in the previous sections reinforce that. It is also mentioned in the section on services, and in relation to both detained and voluntary patients.

• 'I doubt if courts would be helpful given the likely delays. Perhaps MSPs could investigate particular problems'

• 'if there were more acute beds in hospitals, there would not be a problem
• 'the CPN should have more power to decide what and when medical intervention is necessary'
• 'a law is needed to allow police and social workers to enter a patient's home after complaints of severely disturbed and antisocial behaviour, so that assessment can be made for the patient who needs a care plan'
• 'compulsory treatment not only if there is a risk to life but also of causing ill health of carer or putting others in a state of fear and anxiety or of neglecting themselves'.

• 'they should be legally bound to provide adequate facilities and to publish information on needs that are unmet'
• 'the care plan should include roles and remits of people involved, including advanced directives and responsibility for co-ordination'

• 'by a body such as the MWC'
• 'by an independent watchdog who would monitor the rights and report violations to the courts or a tribunal'
• 'lack of assessment and care plan should be a basis for legal challenge'
• 'by making care plan meetings mandatory'
• 'by making it a legal requirement to see a client a set number of times, with objectives and care set out, using the national standards of the probation service as a model. There could be minimum basic standards of follow-up for anyone who has been on section'

• 'would need a vast increase in resources and flexibility in their use'
• 'impossible without adequate resources and consent and compliance of users and workers'

9 RELATIVES AND CARERS

9.2 Carer's rights to require assessment of service user's mental health

We asked 'Do you think that carers should have a legal right to require an assessment of a person's mental wellbeing when their relative does not recognise that s/he is ill?' 91% of carers and 50% of service users said YES, with 22.2% of users saying NO and 27.8% of users UNSURE.

We asked for written comments about how this could be done without excessive erosion of the service user's civil liberties. It was pointed out that the civil liberties of the carer, and others, might be at risk if the service user did not receive some form of intervention.

Some carers felt that the civil liberties of the user are secondary if a potentially serious crisis can be averted. Moreover, it can be argued that it is the right of a person who is mentally ill to expect care and protection at a time when judgement is impaired.

This whole issue is very difficult, especially when, someone is ill for the first time,

It was thought that GPs should not be the only gatekeepers, and CPNs and other mental mental health professionals could usefully visit the family to find out the carer's concerns and discuss these with the user, The family does need a third person to discuss the situation. The carer should be listened to.

One respondent who said 'NO' thought that an experienced counsellor could visit, discuss the situation and explore ways forward. Another thought that the carer should get support, and a needs assessment, with perhaps some intervention to guide the user towards services voluntarily.

For people who have had a previous episode of illness, the use of advance directives was seen as potentially helpful.

• 'confidentiality should be maintained as far as possible but it should not be used as an implement to bar carers from accessing informiation'
• 'even without the user's consent, carers should have access to emergency and crisis services if the user is still in touch with them and visiting'

• 'carers want to kniow whiat they can do to help - in detail, since they will have to cope on their own'
• 'right to be listened to and consulted to give them confidence in helping the user'
• 'staff in residential homes are informed, why not the family?'
• 'best interests of both to have discharge arrangements discussed at a full meeting of all concerned'
• 'if user and carer share a home, there should be annual updates on information as a minimum'
• 'right to know where my son is. He was transferred to a homeless unit and nobody could tell me where he was. He was moved so quickly from hospital that he didn't have time to contact me'
• on discharge, carer should be given information and contact numbers for when difficulties arise'

• 'carers should have a right to information about the illness and how best to help. If the user is at home, there should be both information and involvement and if not, they should get information about discharge if they actively support the user'

• 'only if user is in crisis or danger in a psychotic episode'
• 'accepting the need for balance between confidentiality and the importance of giving relatives some information'

• 'depends how "close the user is to the carer and how much the user depends on the carer'
• 'carers should not get personal information unless deemed essential by all the care team'
• 'the care team should try to get to know carers'
• 'carers should have the rights to information re treatment and diagnosis'

• 'some users may avoid mental health agencies if confidentiality is not total'

• 'carer should be told that user does not want them to know and be given advice on how to cope with this'
• 'relative must be reassured that care is being given'
• 'must be a right to know 'who' or 'how to access if a relapse occurs'

• 'if carer is involved in rehabilitation, guidance is necessary and the more knowledge you have of the illness, the more you can help and have some understanding of how you should react'
• 'if the user is living with the carer or visiting frequently, the carer should have rights to a minimum of information, to be negotiated with the user'
• 'if the user is ill, he may say "No" but may change his mind if asked again. The question should not be discussed until the user is well enough. I never got to see my son for months because of this'
• 'you would not expect a nurse to care for a patient and be told nothing re treatment and medication. Why expect carers to give care and support 24 hours every day?'

NSF(S) staff felt that general information was needed and if the user was under section, there should be a legal right.

Again it would seem that 'advance directives' and the user's opportunity to choose the 'nearest relative' or carer would help to close the gaps between users' and carers' views.

Among the few replies from service users, some additional suggestions were - home help, carers support, financial and social services support.

NSF(S) staff agree with this but add education courses for carers, advocacy services and help to look after and recognise their own interests.

A professional carer said that support should be given to share the burden, give help and advice about benefits, self-help and information groups.

• 'should be a right for the user to nominate the 'nearest relative' and deny information to others'
• 'the nominated person must be seen by the professional carers as a responsible person'
• 'family may not be able to care because of illness but still like to help'

• 'if the relationship with the 'nearest relative' breaks down, there are family conflicts'
• 'if the user is afraid of the 'nearest relative' who may have been a past cause of distress'
• 'if the 'nearest relative' has a questionable life-style or is in trouble with the law'
• 'if the 'nearest relative' is not involved in the care and support of the user'
• 'after the first episode of illness, the user should have a chance to change to someone more acceptable to all concerned'

11 INCAPABLE ADULTS (HEALTH ISSUES)

We asked if respondents supported the idea of a legal right to make advance directives. A significant majority (55.7% of carers and 62% of users said YES, with a further 23.7% of carers and 14% of users saying PARTLY) agreed with the idea of some type of directive even if all of it was not legally binding. Some doubts were expressed that

• 'mental illness may affect judgement and making decisions to refuse future treatment must be based on informed choice. Wouldn't it be awful if an individual had stated no ECT and died of treatable depression? Individuals should be able to express views on future treatment but this should not be legally binding, allowing doctors to act in the best interests of the patient'
• 'it might not be clear in advance what the problems might be'
• 'directive could specify preference which could be helpful'
• 'difficulty in knowing when an individual is in the right frame of mind to make a directive, perhaps having a view against certain actions and people'
• 'when well, users would understand the usefulness, but when ill, what happens?'

Several respondents thought that practical directives rather than medical ones would reassure people about practical concerns - e.g. care of pets, bills, food in refrigerator etc.

When well enough, many people would be able to say whether they wanted contact with the 'nearest relative' and at least whether that relative should get some minimum information. If the service user was willing, they could give guidance to the carers to carry out the wishes of the user as s/he would have wished if s/he hadn't been unwell.

Some carers wondered why some of these questions needed to be asked:

• 'if the family are supporting the service user they should have the rights even if the user does not agree. The families are the ones who care 24 hours of the day'
• 'withholding information should be the exception. Staff should demonstrate the positive need to withhold it'

• 'if the carer is at risk'
• 'if the service user is preventing information being passed on to the staff'
• 'directives should not exclude intervention by the carers if the need arises'

The diversity of the comments received shows what a difficult issue this is.

• 'letting patients choose which ward they can be in if compulsorily in hospital or which next-of-kin to live with if cared for in community'
• 'rotation of nurses would be beneficial as there would be no question of constant physical or verbal abuse'
• 'more regard paid by local councils to areas of housing for vulnerable patients' a key worker for every mentally ill person is imperative e.g. a CPN or social worker visiting a certain minimum number of times per month'
• 'a system of hospital visitors like prison visitors which allows private complaints to be made without fears of repercussions and with possibility of transfer to a non threatening environment'
• 'female only wards. Separate hospital patients not by convenience (geographical) of doctors but by condition'
• 'help with money-handling and legal rights as to tenancy, benefits and debt'
• 'adequate measures to ensure staff of hospitals and other establishments are well trained and supervised'

• 'close liaison with police so that measures can be made to work'
• 'if evidence could lead to a prosecution, that should not depend on the vulnerable adult being a witness'
• 'a more responsive, understanding police force'
• 'people are not always sure of their rights e.g. if assaulted by another patient. Perhaps make sexual relations between a service user and someone providing a service, an offence'

• 'the needs of informal unsectioned quiet patients are as important as those of detained patients. It would seem that the former can be left at the bottom of the pile'