Question 1.
Does the content of Chapter 1 meet the aims set out in its introduction? If it does not suit your needs, please explain why.
Comments: Yes

Question 2.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 2 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes

(b) How helpful and realistic are the scenarios contained within Chapter 2? If they are not helpful or realistic, please tell us how they can be improved.
Comments: They are fine.

Question 3.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 3 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Mostly. However, the issue of judging mental capacity is too loosely operationalised. For example, paragraph 3.45 acknowledges that many carers will lack expertise in judging capacity and need only hold a ‘reasonable belief’. However, this belief may be based on considerable ignorance (e.g. an inability to distinguish between cognitive and communication impairments). The person who has his/her capacity judged is left unprotected since he/she may be unable to challenge the judgement, not because of a lack of mental capacity, but by means to communicate his/her wishes to challenge the decision.
Deciding that someone lacks capacity is a serious matter and the reasoning that underpins ‘reasonable belief’ needs to be explicit. The Code of Practice should start with the assumption that any individual has capacity to make a particular decision and place the burden of evidence on the person judging that this is not the case. There should be an explicit demonstration that issues such as impaired communication have been assessed. When no previous decision about the individual’s capacity has been made, the Code should encourage a medical opinion to be sought. This should be added to the list in 3.54.

b) How helpful and realistic are the scenarios contained within Chapter 3? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 4.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 4 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes

(b) How helpful and realistic are the scenarios contained within Chapter 4? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 5.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 5 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Mostly. However, it is inappropriate for a person who lacks capacity to have decisions about treatment of mental disorders decided for him/her by someone else as a common law ‘best interests’ scenario. The person would not then be afforded the protections guaranteed under the Mental Health Act. Also, such an action is likely to contravene the Bournewood judgement (see promised update of paragraph 5.49). The Code should aim for the highest protection of people who lack mental capacity, and this can only be afforded by the use of the Mental Health Act to treat people with mental disorders who lack mental capacity to agree to such treatment themselves. This should be the case even if the circumstances of paragraph 5.36 do not apply since people who lack capacity are vulnerable to persuasion that stops short of physical restraint but could be construed as psychological restraint.

(b) How helpful and realistic are the scenarios contained within Chapter 5? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 6.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 6 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes. It would be helpful to add to 6.59, where denial of access to a medical practitioner is stated as a cause for concern about an attorney’s actions, that removal from hospital of a person with mental incapacity undergoing medical treatment against medical advice would also be a cause for concern.

(b) How helpful and realistic are the scenarios contained within Chapter 6? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 7.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 7 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Mostly. Greater clarity is required in paragraphs 7.48 and 7.55 about how the costs of purchasing insurance are to be met in cases where the person who lacks capacity has insufficient assets to cover these costs. Will these costs be borne by the responsible Local Authority in such cases?

(b) How helpful and realistic are the scenarios contained within Chapter 7? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 8.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 8 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Mostly. However, the Code needs to explain the reasoning behind allowing a person to make an advance directive about life sustaining treatment, but not allowing for any advance directives about the kind of treatment they wish to avoid for treatment of a mental disorder. For example why should the administration of electroconvulsive therapy take precedence over the provision of nutrition and hydration? Why can a person decide in advance against receiving a blood transfusion that may be life saving, but not against certain antidepressant drugs? This is another important reason why all people lacking mental capacity should be formally treated under the Mental Health Act (see Q5a above).

(b) How helpful and realistic are the scenarios contained within Chapter 8? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 9.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 9 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Mostly. However, paragraph 9.32 requires an IMCA for people who lack mental capacity when they are moved from one hospital to another where expected length of stay exceeds 28 days. This will frequently be the case when a person is moved from an acute setting (e.g. surgical repair of a fractured hip) to a rehabilitation ward. The Code should change the term ‘hospital’ to ‘NHS long term care facility’ as this is the issue that the Act seeks to address.
A further issue arises in paragraph 9.51 with respect to privately funded treatment (i.e. in a private hospital, but not NHS-funded). The Code needs to make explicit who the ‘responsible body’ is in this case.

(b) How helpful and realistic are the scenarios contained within Chapter 9? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 10.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 10 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: There are major difficulties with this section. If applied as it is currently written, the same problems will arise as have already emerged in Scotland under the provisions of the Adults with Incapacity Act 2000. The major issue is that people with mental incapacity are excluded from participating in research which, if they had capacity, they may have chosen to participate in. The effect of this is to deny them a fundamental human right to benefit from research; The Code envisions that the only benefits of interest to people who lack mental capacity are those that directly relate to that incapacity. However, this is by no means the case. Here are a few examples:

A person with mental incapacity has a rare genetic condition unrelated to the cause of their disability. Genetic testing of the individual would be of great benefit not only to the individual but also to other family members in helping to determine the cause of the disease and potential treatment. If the individual had mental capacity he/she may well have chosen to participate in research. But because they lack capacity, the Code prevents them from participating, and this may have serious consequences for both him/her and their family members.

People with Down’s syndrome more commonly develop cataracts. An improved cataract treatment is being tested, but a person with Down’s syndrome who lacks capacity is excluded from participating, whilst a person with Down’s syndrome who has mental capacity can take part.

A person with mental incapacity due to Down’s syndrome has a common medical problem such as hyperlipidaemia. It is unclear whether treating hyperlipidaemia in Down’s syndrome has specific risks or benefits (just like any other sub-group, e.g. women, people with diabetes, people of different ethnicities etc). A large randomised controlled trial of treatment is being undertaken. Other sub-groups can participate and benefit from finding out if the treatment is beneficial for them, however the person with Down’s syndrome is prevented from doing so.

A qualitative study is being undertaken to find out about people’s experience of a hospital service, for example renal replacement therapy. However, because the service is not directly connected with the cause of the mental incapacity and can be carried out with people who have capacity, the person with mental incapacity is excluded and his/her voice is not heard.
The Code should emphasise the protection of people with mental incapacity undertaking research, but should not deprive them of the potential benefits of such research. Instead it should frame the question of participation in terms of potential harm; i.e. people with mental incapacity should not be allowed to participate in research where their incapacity makes it more likely that they would suffer harm compared with someone who has capacity. The test of ‘best interests’ should be applied in a broad way, not just narrowly in terms of the cause of incapacity (see paragraph 10.15), and the acknowledgement that co-morbidities (more common in may people who lack mental capacity) are also valid conditions for participating in research.

Extending these issues, 10.19 needs to be rewritten, since repeated blood samples may be needed for some research (e.g. acute glycaemic control in Prader-Willi syndrome), would be agreed to by people with mental capacity, but people with mental incapacity are denied potential benefit. The last sentence should be rewritten as ‘might be considered unduly invasive if no potential benefit to the understanding or treatment of the condition was likely’.

(b) How helpful and realistic are the scenarios contained within Chapter 10? If they are not helpful or realistic, please tell us how they can be improved.
Comments: They are OK, but the Code writers should reflect on the example in 10.16. Suppose the treatment had been for osteoporosis, common in men with Down’s syndrome, but far less common in men in the general population so that the benefits of treatments studied in the general population cannot be generalised to men of a younger age with Down’s syndrome. The writers should consider how treatment for younger men with Down’s syndrome and osteoporosis are to be developed if such people are excluded from taking part in research that could benefit them, but is not directly connected with their mental incapacity?

Question 11.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 11 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes. The issues of invoking the Mental Health Act (see Q5a above) recur in paragraph 11.18.

(b) How helpful and realistic are the scenarios contained within Chapter 11? If they are not helpful or realistic, please tell us how they can be improved.
Comments: The single example is fine.

Question 12.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 12 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes, though a new Mental Health Act is no longer relevant. Paragraph 12.14 emphasises the extra safeguards of the MHA (see Q5a above) and paragraph 12.23 again raises the legal difference between mental disorder and life sustaining treatment (see Q8a above) that needs more explicit reasoning set out to justify this distinction.

(b) How helpful and realistic are the scenarios contained within Chapter 12? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 13.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 13 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes. The issue of removing a person who lacks mental capacity from hospital against medical advice should be included as a potential act of neglect in paragraph 13.6 (see Q6a above).

(b) How helpful and realistic are the scenarios contained within Chapter 13? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 14.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 14 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Mostly. Resource implications for Mediation Help lines in paragraphs 14.16 and 14.17 need to be considered.
There is a difficulty in using the generic Hospital Complaints procedures to sort out disagreements about proposed treatments (paragraph 14.22ff). Hospital Complaints procedures are not designed for this purpose and are likely to unsatisfactory to both carers and doctors. Carers are likely to receive a formal response such as ‘Doctor X considered various options and decided option A was that in the patient’s best interest’, and the doctors would have to spend time responding to complaints that they could be better using treating the patient. At the heart of these disagreements will either lie an issue of communication – but this is unlikely given the requirements for doctors to consult – or a different perspective of priorities that comprise a patient’s best interests. It would be better to have some independent local review system, involving for example the medical/clinical director and a senior social worker that could communicate through the patient liaison officer in a more timely and flexible manner rather than label the disagreement as a ‘complaint’.

(b) How helpful and realistic are the scenarios contained within Chapter 14? If they are not helpful or realistic, please tell us how they can be improved.
Comments: These are fine.

Question 15.
(a) Having particular regard to the practical situations in which you may apply it, please consider if Chapter 15 meets the aims set out in its introduction. If it does not suit your needs, please explain why.
Comments: Yes, though the inappropriateness of complaints procedures, that are perceived as adversarial, to resolve disagreements applies again to paragraphs 15.31 and 15.32 (see Q14a above).

(b) How helpful and realistic is the scenario contained within Chapter 15? If it is not helpful or realistic, please tell us how it can be improved.
Comments: This single example is fine.

Question 16.
(a) How effective is the overall style and format of the Code, (including the contents page, references and annex)? Will it suit your needs and if not, please explain why?
Comments: Fine.

(b) If you have any final general comments, including comments upon the issues raised within the consultation paper, please include them here.
Comments: None.