The Millan Committee is tasked with a review of the Mental Health (Scotland) Act 1984, and as part of the exercise NSF(S) questioned its members and provided the following first detailed response. This is the full text of the NSF(S) document.
The Millan Committee website can be visited at www.scotland.gov.uk.

CONTENTS

  1. The consultation process

  2. Profile of respondents to the NSF(Scotland) Questionnaire

  3. Full response, linked where possible to headings contained in Millan Committee paper:

    1. Is specific mental health legislation necessary?
    2. What elements should be contained in any mental health law?
    3. Overarching principles
    4. Definitions
    5. Compulsory Measures
    6. Voluntary Patients
    7. Advocacy
    8. Services
    9. Relatives and Carers
    10. Civil and Social Rights
    11. Incapable Adults (Health Issues)
    12. Vulnerable Adults

(July 1999)

A - The Consultation Process

  • A questionnaire was devised and sent out to all 500 members of NSF(Scotland),NSF(Scotland) Groups, projects and staff in May. A copy of this is attached. It was made clear to respondents that they did not have to complete every question. Over 200 were returned and continue to arrive. The analysis outlined in this response is of the 196 who had responded by the final date for replies, although others will be taken into account for the second response to the Committee.

    This is the largest response we have ever received to such a questionnaire. Given its length and complexity, this is an indication of the importance of this review to people involved with the Fellowship, whether as members, service users, or staff.

  • Two consultation discussions took place internally, with members of NSF(Scotland)'s Board of Management, and with senior members of staff.

B - Profile of Respondents to the Questionnaire

  • Of the 196 who sent back the questionnaires by the final date for responses:

    52.6% (103) were informal carers
    27.6% (54) were service users
    5% (10) had a combined status of carer and service user
    9.2% (18) were 'professional carers'
    5.6% (1 1) were members of NSF(Scotland) staff.

  • 184 (94%) were white, including UK born or settled.
    Of the others who responded to this question,
    3 were of Irish origin
    1 was of Asian origin
    2 were of European origin

  • In developing a profile of the service users, we asked informal carers to answer questions in respect of the person they support. Of the carers and service users who responded to the relevant questions:

    • 67% (104) of service users have a main diagnosis of schizophrenia
    • 63% (100) have had direct (as service user) or indirect (as carer) experience of detention under the Mental Health (Scotland) Act 1984, in the majority of cases within the past 4 years.
    • 61% (85) of the service users have had mental health problems for over 1 1 years
    • 57.5% (81) of the service users were over the age of 36
    • 67% (103) of the service users were male
    • 24% have other disabilities, including physical disability, learning disability and/or hearing impairment.

C - Response from NSF(Scotland)

1   Is specific mental health legislation necessary?

This question was considered at some length during the consultation discussions. It was one which had not been posed by the Millan Committee, but was seen as relevant to the current review process.

The conclusion reached was that specific mental health legislation is necessary. We recognise that there is common ground with some other forms of incapacity. The argument that mental health law is necessary does depend on an acceptance that there is such a thing as 'mental illness' (medical model). This view has been reached for the following reasons:

2    What elements should be contained in any mental health law?

Any new legislation should:

  • be comprehensive, across the full spectrum of care and for the duration of a person's need, from first entry to the 'system' to final exit from it
  • be accessible, understandable, and clear, with no ambiguities which lead to problems of interpretation
  • be open, not presupposing that hospitals are the only option
  • allow for a range of service delivery, which is not solely buildings based - some services can be well delivered in the person's own home.
  • Provide access to resources and services (something 'will' happen, not 'should' happen)
  • Take account for the need to provide creative access to secondary care. Are GPs always the most appropriate means of access?

3    Overarching Principles

3.1    NSF(Scotland) broadly agrees with the key principles outlined. We further believe that any new legislation should be compatible with our own statement of values, namely that:

3.2    A further issue of principle emerged during internal consultation. The right of society, enshrined in law, to remove individuals' liberty (albeit in their best interests) when they have committed no crime, must go hand in hand with society's duty of responsibility to such individuals. This must include a duty to provide adequate and responsive services.

Particularly after a person has been recognised as having a serious mental illness which may have led to detention, services should be in place which will ensure insofar as is possible that further detention can be prevented.

The need to detain should be seen as a last resort, and questions should always be asked afterwards as to how the detention might have been prevented. For example, NSF(Scotland) has heard from carers and service users for many years that urgent requests for help may not always result in a service response. 30% of carers and service users in our survey reported that they had at some point faced difficulties in getting urgent help from their GPs. 23% had requested admission to hospital and been refused.

3.3    Any new legislation should focus not only on people rather than diagnoses, but should also take into account the infrastructure of people's lives - the services they receive, the communication systems in place between agencies/professionals (as well as with users and carers), and the informal support systems they have. Legislation needs to relate to this totality and enhance the role of the infrastructure rather than focusing only on issues of detention/capacity.

3.4    Concerns were expressed during the consultation that part of the current problem is around implementation of existing law. A view was taken by many that to reform the law in a policy vacuum is a waste of time, and that central government must provide sufficient resources to make real change a reality.

4    Definitions

4.1    We asked those taking part in our survey if they thought it 'possible/appropriate to define mental disorder on the basis of need rather than diagnostic category.' Of the 188 people who responded (160 of whom were carers and/or users), 62% agreed that people should be considered on the basis of their individual need/situation, rather than whether they should have been diagnosed in a particular way.

4.2    Personality Disorder

In a concern of particular relevance to NSF(Scotland), it appears that some people labelled as having a personality disorder have subsequently been re-diagnosed as having an acute mental illness (and vice versa). This can currently have implications for individuals' access to services.

In some of the discussions which took place within NSF(Scotland), a view was taken that there should be provision for people with personality disorder, but not under mental health law. This would perhaps solve some of the difficulties regarding access to services, but only if greater clarity is reached regarding what personality disorder actually is; when is it a true 'diagnosis', and when is it being used as a convenient label for troublesome patients?

We asked service users and carers if they, or the person they supported, had ever experienced a change in diagnosis to/from personality disorder, from another diagnosis.

Of the 159 people who responded, 17 (11 %) said that this had happened. This is 17 too many, and highlights the reasons for the Fellowship's concerns about the diagnoses of mental illnesses/personality disorder if diagnosis is treated as an exact science, and the diagnosis then used as the defining passport to services.

In terms of the subsequent impact on services offered, we also asked for the views of the group of 17 people how this had affected the support/services offered. The feedback to this question will be given in our second response to the Committee.

4.3    Because of the concerns outlined in 4.2 above, we asked respondents if they thought service users should have a right to an independent second opinion on diagnosis (i.e. not on treatment). 183 people responded to this question. Of these, 89% of carers, and 83% of service users, thought they should. 98% of professionals also agreed.

4.4    The Millan Committee asked (para. 2. 1 0) if it should be possible under mental health legislation to detain,people because of a risk to the public, if there is little possibility of their condition being helped by treatment.

Of the 177 people who responded to this question in the NSF(Scotland) questionnaire, 68% thought that it should (72% of carers, and 60% of service users). A number of people (19%) were undecided. 20 did not agree that this should be possible under mental health law, but of these, 1 1 thought it should be possible under some other legal, provision.

5    Compulsory measures

5.1    We did not follow the exact format of the Millan Committee's paper in our questionnaire. We considered a number of questions, including people's views on compulsory treatment in the community. On the more complex technical matters (e.g. questions re time limits, and arrangements for appeal), there was greater uncertainty in the responses we received.

5.2    We asked informal carers and service users if they, or the person they support, had ever been detained under the Mental Health (Scotland) Act 1984. Of 159 carers and users who answered this question, 63% (65% of carers, and 55% of service users) had this experience. The majority of most recent detentions had been since 1995.

5.3    We are aware that the police sometimes become involved when people in the community are being detained under the Act, and were interested to know how the carer and service user respondents had experienced this. We asked them if the police had ever been involved in the detention process, and 59% (99 people) had been in this situation. When asked if police involvement had been helpful, unhelpful, or made no difference, 73% said they had found it helpful. 17% said that in their view it had made no difference, and only 7% said it had been unhelpful.

This is an interesting finding which would bear further examination, although the anonymity of the questionnaire responses means we are not in a position to find out if there were particular common features (e.g. geographical location of respondents) which could be identified.

5.4    We also asked respondents what they thought a 'place of safety' should be (as defined in the police powers of intervention in the current Act). The vast majority of people believed that this should be a psychiatric hospital; less than half were in favour of it being the A&E; Department of a general hospital. A slightly larger number thought a police station should be possible as a 'place of safety', but only if nothing else was available (e.g. in rural areas).

5.5    We asked all respondents if they thought existing time limits for detention are satisfactory. (Millan Committee paper para. 6) Of 187 respondents, 5 1 % though they were, and a further 30.5% were unsure.

5.6    Of 189 respondents, 42% thought that current arrangements for legal review/challenge are unsatisfactory. 43% were unsure.

5.7    We asked whether respondents though it should be possible 'for a person detained under a 72 hour section, or someone acting on his/her behalf, to require the detention to be reviewed in some way'. 38% of 191 respondents thought this should be possible, with 35% unsure.

5.8    We asked a series of questions about compulsory treatment in the community. Those answering were asked the questions given below. They had the option of replying 'Yes', 'No', 'Perhaps', or 'Unsure'. There was some uncertainty, which will be analysed in more detail in our second response. Below we have given the 'Yes' and 'No' responses to each question.

'Do you think that compulsory treatment in the community to prevent relapse/deterioration:

  1. is a good idea? Yes: 61% No: 13%
  2. would prevent people from relapsing? Yes: 45% No: 9%
  3. would require excessive compulsion? Yes: 21% No: 21%
  4. might stop people with a mental health problem from contacting mental health professionals? Yes: 29% No: 20%
  5. would mean people got help before they deteriorated? Yes: 51% No: 10%
  6. would mean that people from black and ethnic minority groups could experience discrimination? Yes: 13% No: 33%
When we asked respondents where such treatment should be received in the event that such treatment orders were introduced, the single largest suggestion was 'in the service user's home', followed by 'local day hospital', 'GP surgery' and 'informal carer's home'.

Clearly, these responses, the majority of which came from carers and service users indicate the need for much more discussion on this matter. For example, although 48 % of service users thought compulsory treatment on the above basis was a good idea, 35% of them were concerned that this might stop service users making contact with professionals.

More will be said on this matter in our second response.

6    Voluntary Patients

6.1     In our questionnaire, we laid out some of the Millan Committee's concerns regarding voluntary patients. The questions we asked do not relate specifically to the questions asked by the Committee, but reflect concerns we were aware of among members, service users and staff.

6.2     Of 185 respondents, 76% thought (with a further 15% undecided) that legal provisions are needed to ensure that people who are vulnerable, but not incapacitated or subject to legal compulsion, have their rights respected and views properly taken into account.

6.3    We asked people if they thought that service users should have a legal right to an independent second opinion about what treatment they need (see para. 4.3 above regarding second opinion on diagnosis). 84 % of 189 respondents believed that they should, with a further 13 % unsure.

6.4    We also asked whether respondents thought that if the 'service user is unable to ask for an independent second opinion on treatment, the informal carer should have a legal right to seek such an opinion'. Of the 180 who answered this question, 89% though this should be possible, with 8% undecided.

7    Advocacy

We asked three questions about advocacy:

7.1    'Do you think there should be a general legal right to have an independent advocate?' 143(79%) of the 181 people who replied to this question said 'Yes'.

7.2    141 of the 143 people who said 'Yes' responded to a further question (see para. 12.1 of Millan Cormnittee paper) as to whether such a right should be mandatory for certain groups of people, such as those who are subject to compulsion, or who may be incapable.

Of the 141, 122 (86.5 %) said 'Yes'.

7.3    162 people answered the question 'Do you think there should be a legal requirement that mechanisms for collective advocacy (e.g. Patients' Council ) should be provided?' 65 % of them (1 05 people) agreed that there should be such a requirement.

8    Services

8.1    We asked respondents if they thought people with a serious mental illness should have a legal right to adequate care and treatment. 97% out of 193 believed they should. With reference to para. 3.2 of this response, this right cannot, and should not, be disentangled from aspects of mental health law relating to detention.

8.2    96% of 190 respondents believed that people with mental disorders should have a legal right to an assessment of their needs, and a care plan.

8.3    80% of 189 respondents believed that there should be greater rights of choice in services.

8.4    In our second response, we will say more about how people thought these rights to services might be enforceable in law. (cf. para. 13.5 in Millan Committee paper).

9    Relatives and carers

Please Note: much more detailed feedback to this section will be given in our second response.

9.1    NSF(Scotland) asked two questions specifically of carers which are relevant to this section. We asked the carer respondents if they had ever given consent to the detention('sectioning') of the person they support. 71 carers replied. Of these, (55%) had consented to detention. Only 17 of the 39 had ever been made aware by the doctor that they could refuse to give consent, and instead require that a Mental Health Officer be asked to make an assessment. This finding from the survey highlights the difficulty of disentangling problems intrinsic to the legislation, from problems with its proper implementation.

9.2    NSF(Scotland) is very aware of difficulties which have arisen for informal carers when someone is becoming unwell, but does not recognise this and refuses to see a doctor or other relevant professional. If the person is over 16, the carer(s) sometimes find it impossible to access help and appropriate intervention. This has at times led to serious crises.

We asked respondents whether they though that carers should have a legal right to require an assessment of a person's wellbeing in such situations. 168 people replied. Overall, 127 (75.6%) thought carers should have such a right, including 9 1 % of carers and 50% of service users. There are clearly some differences of opinion, but this issue requires serious discussion within the Millan Committee's deliberations. We received some written responses to this question and will reflect on these in our later response.

9.3    Of the 165 people who responded to the question 'Do you think there is a need for carers and/or relatives to have stronger rights in mental health legislation?', 77.6% said that there was such a need. 83% of the 99 carers who responded, and 61% of the 36 service users, agreed on this.

9.4    80% of respondents agreed that carers should have the right to have their needs assessed by health as well as social work agencies (para. 14.3).

9.5    In response to the question contained in para. 14.4 of the Committee's consultation 'Should relatives have a legal right to support services which enable them to remain in a caring role?' - 83% of the 169 people who answered said 'Yes'. This included 89% of carers and 68% of service users.

9.6    Nearest relative We asked a number of questions about the nearest relative.

  1. 'Do you think the current way of defining the nearest relative should be changed?' 160 people replied to this question, and responses revealed a greater degree of uncertainty than with any other question. 40% of respondents though it should be changed - 31.5% of carers, and 43% of service users but 38% were unsure.

  2. 'Do you think the 'nearest relative' should continue to have rights in relation to compulsory measures?'
    172 people responded.
    42% said 'Yes'
    10.5% said 'No'
    28% said 'In emergencies only'

  3. 105 people who had said 'Yes' or 'In emergencies only' responded to a follow up question: 'Do you think such consent should be in writing?' Of these, 66% said 'Yes'.

  4. Of the 141 people who responded to this question, 65% though it should be possible for the service user to change who the 'nearest relative' is. This included 59% of carers, and 79% of service users.

10    Civil and social rights

10.1    The European Convention on Human Rights may have implications for people's rights to services which are not being provided. The Scottish Human Rights Trust have cited Australia as a country where human rights legislation has been used in this way by mental health interest groups.

10.2    In relation to para 15.5 of the Millan Committee paper, we have no information at this time, but a request from NSF(Scotland) for information will be circulated shortly among members of EUFAMI, a European wide organisation for families of people with a mental illness. We are asking particularly for examples of effective mental health law.

11    Incapable Adults (Health Issues)

11.1    We asked our respondents some detailed questions about the idea of advance directives. We described these as measures which would mean that 'people with mental health problems could state what they would want to happen if they became too unwell to make decisions about their treatment at the time'. We understand the difficulties of this issue becoming entangled with the issue of 'living wills'. However, we believe from the responses that we received that this particular area should be addressed by the Millan Committee, and that it would be possible to separate advance directives regarding treatment for mental illness from the wider matter of 'living wills'.

11.2    183 people responded to the initial question: 'Do you support the idea of a legal right to make advance directives?' 61% supported this idea. A further 21% were in partial agreement, and 1 1 % were unsure. Only 7% were against the idea.

11.3    Those who had answered Yes, Partly, or Unsure to the above question were asked the questions below. The percentages who responded 'Yes' in columns to the right.

'Should the advance directive be able to specify':

  1. preferred medical treatment and other therapies (including ECT)? 75%
  2. whether the person's informal carer(s) should be consulted? 87%
  3. what information should be given to the person's informal carer(s)?71%
  4. who should take decisions on the person's behalf'? 75%
11.4    It is clear from the above that there is strong support in principle for the idea of advance directives regarding mental health care. We asked people to tell us of anything else they thought could or should be contained in such a document. This feedback will be given in our second response.

12    Vulnerable Adults

12.1    187 people answered the question 'should mental health law include specific measures to protect vulnerable adults from exploitation?' 91.5% believed that it should. We asked people to specify measures. Any responses to this will be outlined in our second paper.

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