WELCOME Aims for today Pass on results from recent AWI consultation - - PowerPoint PPT Presentation

WELCOME

Aims for today

• Pass on results from recent AWI consultation
• Advise main themes emerging from consultation
• Set out next steps

 Clear need for change to legislation.  Even more need for change to practice.  Consultation does not go far enough in meeting requirements of UNCRPD.  Actions needed to provide support for decision making, and support for carrying out decisions.  Must strike right balance between supporting individuals and upholding their rights and viable provision of care and support. Consultation does not do this. Overall view and main themes 316 responses Themes emerging

 Multi agency training needed.  Independent advocacy should be given same status in AWI legislation as it holds in Mental Health legislation.  Must avoid overly prescriptive legalistic systems.  Agreement around areas of law needing change – less so on how to achieve effective change. Overall view and main themes 316 responses Themes emerging

Do you agree with the overall approach taken to address issues around significant restrictions on a person’s liberty? 142 responses

YES - 118

 Offers more flexibility and clarity.  Accurately describes careful decision making.  ‘deprivation of liberty’ – ‘too black and white’.  Must consider how a person lives as well as where they live.  Question of consent needs more consideration – consent must be fully informed and freely given.

NO – 18 BUT WITH COMMENTS 6

 Concerns about consistency of terminology given deprivation of liberty is term used by the Supreme Court.  Concerns might result in every person in a care setting having a guardianship order.  Preference for ensuring that the focus returned to the will and preference of the adult.  Unwise to include statutory definition: duty to ensure reasonable steps had been taken to avoid restrictions on liberty was essential.

In particular we are suggesting that significant restrictions on liberty be defined as the following: The adult is under continuous supervision and control and is not free to leave the premises; Barriers are used to limit the adult to particular areas of premises. The adult’s actions are controlled by physical force, the use of restraints, the administration of medication or close observation and surveillance.

YES - 99  Still concerns around clarity of language.  Need for strict guidelines to minimise misuse.  Need to consider other types of restrictions such as restrictions on meeting with people, use of IT and the way surveillance might be carried out.  Must have clear process for scrutiny and review, system must be flexible enough to allow for short term use. NO - 24

 Preference for retaining term ‘deprivation of liberty’ – restrictions

• n liberty considered ‘too soft’

 Need to consider ‘regular’ use of restrictions before steps taken;  Help should be given before matters get to this stage;  Concerns re how capacity would be assessed, who would determine this;  For persons with dementia a suitable environment can help a lot so lack of this could arguably be restricting freedoms of the adult.

 Ensure legislation could cope with short term and long term loss of capacity, dynamic fast changing situations.  Resources huge concern.  Facilitate someone’s capacity, rather than simply assess.  Ensure a connection with risk of harm and need for restrictions on liberty and for that risk to be proportionate.  Definition of valid consent.  Consider at what point everyday restrictions become an infringement in liberty.  Overlap of legislation.  Might address the law but it is at variance with priorities in relation to hospital discharge.

Are there any other issues we need to consider here?

61 answers

 More work over the summer and put findings to a small working group in the autumn.  New proposals to be tested out early Jan 2019.  Must find balance between protecting and upholding peoples’ rights and a viable system of care – but avoid bureaucracy that has hampered DOLS scheme in England.

What next?

Proposed new principle There shall be no intervention in the affairs of an adult unless it can be demonstrated all practical help and support to help the adult make a decision about the matter requiring intervention has been given without success.

Principles of the Adults With Incapacity Legislation

Do you agree we need to amend the principles of the AWI legislation to reflect Article 12 of the UNCRPD? YES – 117 NO – 24 Does our proposed new principle achieve that? YES – 75 NO – 51 Is a further principle required to ensure an adult’s will and preferences are not contravened unless it is necessary and proportionate to do so? YES – 69 NO – 53 Are there any other changes you consider may be required to the principles of the AWI legislation? YES – 41 NO - 73

Questions

 Better to amend existing principles to reflect requirements of the UNCRPD as a whole.  Must give more prevalence to the will and preferences of the adult.  Consider following model in mental health legislation.  Need for guardians and attorneys to be aware of and adhere to the principles necessary.  By far strongest message is that the duties attached to the principles and the scrutiny of the performance of those duties requires to be much more robust.  “The problem with principles has been they are rarely enforced and often ignored”.

Summary of responses to all questions on principles

 We will work with our legal colleagues to draw up amendments to the existing principles that more accurately reflect the wider requirements of UNCRPD.  We will test out these principles early in 2019.

What next?

Do you agree that there is need to clarify the use of powers of attorney in situations that might give rise to restrictions on a person’s liberty? Yes-135

 Defined wording set out by regulation would provide clarity.  Individualised and comprehensive PoA detailed powers will better protect the granter.  Granter must think about when an attorney can consent to circumstances amounting to confinement.  Periodic review by some form of judicial body or authority if restriction on person’s liberty.  PoA would require significant alterations to meet Article 5 ECHR requirements.

No-5

 The granter is given guidance on best practice to select an attorney. The level of power is delegated to the attorney who will interpret the appropriate level of restriction on a person’s liberty.

If so, do you consider that the proposal for advance consent provisions will address the issue? Yes-86

 Clarity on the powers would provide assurance for all involved at times when decisions around the use of restrictions need to be made.  Would act as a safeguard for the adult, in that their future care arrangements would be clear.  Compliance with Article 12 (4) CRPD must contain safeguards: are free of conflict on interest/undue influence, proportional and tailored to the adult’s circumstances and apply for the shortest time possible.

No-35

 Significant level of detail is required with regard any restrictions on liberty that are to be put into effect.  The adult’s view will change over time and consent provision needs to reflect this.  Disquiet as to how such powers would be monitored and by whom.  Substitute decision makers should never be able to consent to arrangements which would amount to a deprivation of liberty.

Is there a need to clarify how and when a power of attorney should be activated? Yes- 117

 The granter can specify how his lack

• f capacity should be determined

and confirmed.  “The current 16 (ba) clause in the AWI Act is “in practice worthless”.  The PoA should include clear instruction on the management of fluctuating capacity.  The document is registered straight away, distributed appropriately and proper system of notification that a PoA has been activated

No-9

 Complexity of the process will put people off declaring a power of attorney .  Extra cost and hassle of continuously reviewing their powers of attorney.

 Clear tests in place to make it clear when a power of attorney has been activated as a result of loss of capacity.  A non-exhaustive menu of processes for activation as well as staged activation in cases where an adult loses capacity to take some decisions but not others.  Safeguards in place by way of challenge to Office of Public Guardian if it is perceived that a power of attorney has been activated early.  A document should specify the triggers for bringing its provisions into force, or, in the case of continuing powers of attorney come into force immediately upon

• registration. Preserve the grantor’s right to autonomy and self-determination and

improve clarity of when a power of attorney is activated.

If you have answered yes and have views on how this should be done, please comment here.

 A reinvigorated look at powers would benefit all parties involved by reducing the number of resources required in the guardianship process.  In cases where an adult changes their mind the only restrictions applied are those which are absolutely necessary.  The grantor must be fully aware of the extent and consequences of authorisation.

Summary

Do you think there would be value in creating a role of

• fficial supporter?

Yes-82

 Transition from substitute decision making to supported decision making regimes.  Official support should be available for everybody and not based on capacity assessments.  This is in line with CRPD General Comment No 1.  The central starting point for a new re-orientated AWI regime should be support, as understood in Article 12.3 of UNCRPD.  The appointment of a supporter through PoA and to be registered in the same way as an attorney is at present.

No-56

 Make the system increasingly bureaucratic and complex.  Increase the chances of misuse of power and conflict of interest.  Unnecessary layer of duplication.  Undermine supporting informal networks.  If the right support is in place, there should be no need for

• fficial supporter.

 Advocacy done well should achieve the same thing.

 Registered through the power of attorney.  Supervision could be undertaken by OPG or Mental Welfare Commission.  The appointment made by the person themselves and it should reflect the adults wishes.  Guidelines in place about the characteristics required of an official supporter, the safeguards in place and the training and support available.  Given the importance of such a role a court or tribunal should make the appointment where a best interpretation situation arises.

If you have answered yes, please give us your views on how an official supporter might be appointed?

Countries that have created a role of supported decision maker have used different names, such as supportive attorney in Australia, or a Godman in Sweden, meaning custodian. We have suggested ‘official supporter’, Do you think this is the right term or is another preferred.

Yes - 54

 Good choice as it does not imply carer and is considerate of person in need and it captures the legal nature of the term.  The name of the role was not important, but it was important that support is provided to people who want it regardless of their mental capacity.  Important that the supporter is chosen by the person themselves.

No - 18

 Concern that it had a lot of football connotations.  Official supporter doesn’t convey the legal nature of this role.  The term official should be removed as this is not a formal role and the label may be misleading and it sounds too bureaucratic.  It should carry no connotation of authority and that language that is suggestive of passivity on the part of the adult should be avoided.

Prefer another term Number of respondents Supportive Attorney 5 Nominated Supporter 5 Registered Supporter 3 Appointed Supporter 2 Personal Supporter 2 Chosen Supporter 2 Decision Supporter 2 Custodian 1 Authorised Supporter 1 Statutory Arbiter 1 Prefer another term

Should we give consideration to extending the range of professionals who can carry out capacity assessments for the purposes of guardianship orders?

Yes-93  A comprehensive review of how capacity is approached.  Replace the existing medical model approach with a social model approach with assessments carried out by range

• f professionals .

No-50  Supported decision making regime should be incorporated.  Concerns that widening the scope of professional’s authorised to assess capacity risked that individuals would be wrongly assessed.  Until requirements of training, supervision and auditing are in place then there was no need to extend the scope of professionals.  Consistent approach across law and medicine on capacity issues is required.

Professional Number of Respondents Clinical Psychologist 32 Social Worker 20 Mental Health Officer 15 Nurses 14 Community Psychiatric Nurse 12 Speech and Language Therapists 10 Neuropsychologist 7 Occupational Therapist 3 Allied Health Professional 3 Advanced Nurse Practitioner 3 Mental Health Nurse 2 Care Worker 1

Respondents suggested a range of different professionals

Question: Do you agree with the proposal for a 3 grade guardianship system? 149 Responses 47.9% of Respondents

Yes - 79

 Speedier to put in place  Simpler  More flexible  Tailored to circumstance  More accessible  Less expensive

No - 54

 50% concerns about grade 1  Not enough safeguards  Powers too wide  No judicial scrutiny  Articles 5,6,8 ECHR  Financial abuse  More bureaucracy  Adults’ views  Art 12 UNCRPD - Support for decision making

Our intention at grade 1 is to create a system that is easy to use and provides enough flexibility to cover a wide range of situations with appropriate safeguards. Do you think the proposal achieves this? 127 Responses 40.8% of Respondents

Yes - 60

 Largest proportion thought proposal made things simpler and easier.  A smaller number felt that grade 1 needed clarity in relation to supervision of financial and welfare matters.

No - 52

 ¾ - powers too extensive at grade 1 and not sufficient legal safeguards in relation to judging suitability for appointment.  Not UNCRPD or ECHR compliant.  Wide powers in a tick box would not guarantee applicant would seek least restrictive powers.  Applicant may choose not to intimate on interested parties.  Process complex and onerous on applicants.  Added pressure on LA services.

Are the powers available at each grade appropriate for the level of scrutiny given? 122 Responses 39.2%

Yes - 56

 18 gave reasons and in majority of cases were very brief, agreeing powers appropriate.

No - 54

 50% stated insufficient safeguards and scrutiny at grade 1.  Concern re welfare powers at grade 1 including all welfare powers, decisions in relation to medical treatment and powers in relation to the day to day care of the adult.  Inability to consent or absence of consent by the adult should not be considered tacit consent.  Adult’s views would not be heard at grades 1 and 2.

We are suggesting that there is a financial threshold for Grade 1 guardianships to be set by regulations. Do you have views on what level this should be set at? 110 responses – 39.2%

61 agreed with a threshold

 25 agreed with £50,000 threshold.  23 thought threshold should be lower.

17 disagreed with threshold

 Just over half considered the proposal was flawed as there was insufficient scrutiny at grade 1.  Should be Supported Decision Making  Not a good barometer of power  Discriminatory

We are proposing that at every grade of application, if a party to the application requests a hearing one should take place. Do you agree with this? 131 Responses 42.1%

Yes - 109

 Involving the adult in proceedings.  Protecting the rights of the adult.  A necessary safeguard.  The application being subject to sufficient scrutiny.  Should be a hearing at every grade.  Other comments.

No - 8

 Should be hearings at all grades.  Insufficient safeguard and would be ineffective if the adult only had one close friend who had ulterior motives to be a guardian, leaving no-one to disagree.  Still under the paradigm of substitute decision making, where supported decision making was the desired system.

We have listed the parties that the court rules say should receive a copy of the application. One of these is ‘any other person directed by the sheriff’. What level of interest do you think should be required to be an interested party in a case? 100 Responses 30.9%

Party Number Close friend or relative having supportive relationship 14 Anyone having a regular caring input into the adult’s life 13 Anyone with significant, current and

• ngoing contact with the adult

12 Discretion of sheriff/tribunal 11 Conflict of interest issues 10 Advocacy worker 9 Anyone demonstrating an interest in the adult 6 Legal representatives 5 Medical practitioners/other health professionals 5

Where there is a severe restriction on liberty and all parties agree do you think it is enough to rely on the decision of the sheriff/tribunal at grade 2 or should these cases automatically be at grade 3? 109 responses – 34.9%

Grade 3 - 62

 Proper level of judicial scrutiny  Consistent with Art 12 UNCRPD  Should be for any restriction of liberty  Safeguards matched with the powers sought, rather than criteria being disagreement

Grade 2 - 18

 Give power to sheriff to move up and down grades  Least restrictive method

Do you think our proposals make movement up and down the grades sufficiently straightforward and accessible? 117 responses – 37.5%

Yes - 68

 Grade 1 – Dissatisfaction with wide array of powers available and the relative lack of safeguards.  Benefit to a reformulated grade 1 registered with the tribunal.  Case management discussion where the level of scrutiny can be determined.  Sheriffs - extend renewed guardianships beyond five years with an upper limit of ten.  Stipulated timescales are recommended to avoid delays in process.

No - 38

 Theme – lack of clarity, more detail needed.  Timescales around completion of reports.  Who determines which grade applicable?  Moving up more complex.  Another layer of complexity - should be simplifying an already complex system.

Do you agree with our proposal to amalgamate intervention

• rders into graded guardianships?

119 responses –38.1%

Yes - 79

 As long as LA can apply for financial guardianship.  Process the same as guardianship.  Rarely used, adult requires series of interventions.  Reduce number of orders in Act.

No - 25

 Removing least restrictive option.  Apply for too many powers.  Unclear when power concluded.  Separate intervener and guardian – different people may need to carry

• ut tasks.

 Need more evidence.

 Some comments were:  Organisations would have to have a range of duties imposed upon them as do the local authority at present.  Conflict of interest, concentration of power and lack of accountability.  Not clear how suitability would be assessed.  Not clear how organisations would be supervised.  Individual responsibility in organisation.  Practical issues where the organisation is subject to closure or funding issues.  Difficulties when adult changes places when the care home is guardian.

Organisations as Guardians

Do you agree with the proposal to repeal Access to Funds provisions in favour of graded guardianship? 118 Responses 37.7% Yes - 86

 Simplify a poorly understood and complex system  Lack of use  Resolve flaws in graded guardianship first  Local Authority able to be financial guardian  Reduced cost  Change name from guardian

No - 17

 Access to Funds requires review  Least restrictive method  Straightforward governance from Office of the Public Guardian  Substitute decision making – should be supported  Lack of safeguards of graded guardianship system

Do you agree with the proposal to repeal the management

• f residents’ finances?

108 responses –34.5%

Yes - 79

 Lack of use  Simplifies process  Only when grade 1 flaws addressed  Organisations financial guardians, not welfare  Organisations will not take guardianship on due to administrative burden

No - 16

 Conflict of interest  Scheme works well in hospital. Remove £10,000 limit for more uptake  Prefer supported decision making  Lack of funding not good reason for change  Undue concentration of power in

• rganisation

Do you think that using OPG is the right level of authorisation for simpler guardianship cases at grade 1 ? 123 responses –39.2% Yes - 62

 Simpler, less formal. Less intimidating than court, quicker, ease pressure on system.  OPG qualities – experience, expertise, knowledge and training.  Qualified approval – amendment of grade 1.  Consideration to participation of adult  OPG Resources.

No - 52

 Lack of safeguards.  Lack of judicial oversight.  OPG insufficient experience in welfare matters.  Adult protection concerns.  OPG only low level financial cases.  Other comments.

Which of the following options do you think would be the most appropriate approach for cases under the AWI legislation? 122 responses –38.9%

17 OPG/Sheriff in chambers/Sheriff in hearing

 19 Sheriff in chambers/Sheriff in hearing

53 OPG/Mental Health Tribunal legal member papers only/Mental Health Tribunal hearing

 14 ticked neither yes or no for the above options but actually preferred the tribunal to be the forum for all three grades. An extra two preferred the sheriff court. Therefore removing grade 1:

 67 Mental Health Tribunal legal member papers only/Mental Health Tribunal hearing

 Less daunting  Easier access for adult and family  Greater knowledge, experience and expertise of mental health issues  Consistent and timely decision making  Burden on MHOs to attend tribunal  Further training  Venue would bring mental health and incapacity legislation together  Other comments

OPG/Mental Health Tribunal Legal Member/Mental Health Tribunal Hearing

 Sheriffs experienced in conducting hearings, case management and producing reasoned written decisions.  Expertise in considering evidence, making findings in fact and coming to a decision on the legal tests.  Experience in property and financial matters.  Court could be made less formal, for instance by moving it, under existing AWI powers.  Continuity and reduced red tape.  Seen as impartial, respected and authoritative.  Development of case law and access to court reports.

OPG/Sheriff in Chambers/Sheriff in Hearing

Please also give your views on the level of scrutiny suggested for each grade of guardianship application 68 responses – 21.7%

Adequate - 14

 Majority did not give reason.

Not adequate - 21

 large proportion referred to grade 1 provisions being inadequate.  Dispense with grade 1 and go with a 2 tier system, using the grade 2 and 3 proposals.  Maximum scrutiny should apply at each grade, otherwise discriminatory

• n disability grounds.

 Retreat from efforts to safeguard under ASP.  Other comments.

 Information from consultation both quantitative and qualitative  Some graded guardianship issues we have to look at  Graded guardianship proposals likely to be significantly amended from those in consultation  Forum tied in with guardianship application  Quantitatively preference for MHT  Qualitative responses to be considered by working group

Summary of graded guardianship and forum

Is there a need to change the way guardianships are supervised?

YES - 91

 Model of joint working “co- production”.  Statutory guidance for private guardians.  Similar admin processes for PoA and Guardianship.  Investment and Resources.  Risk based system.  “Register” of high risk Guardianship

• rders.

 Terminology used is complex.

NO - 19

 No need for change.  Resource Issue not a process issue.  Impractical, complex + lead to confusion.  Line of accountability obscured.  Undermine the ASP Act 2007.  Guardianship replaced with SDM.

 Establish working group.  Easily understood, clear and concise.  Local Authorities to supervise all financial + welfare guardianships.  Additional funding to local authorities – early intervention, monitoring and

• support. Reduce the potential for high risk cases progressing to ASP

investigations.  Guardianship replaced with SDM. Guardians replaced by Supportive Attorneys.  Investment/resources – training, registration, periodic re-registration, on- going support, advice and supervision.  Streamline AWI Act, ASP Act and the Mental Welfare Act.  Streamline number of bodies involved.

If you consider an alternative approach would be preferable, please comment in full ?

 Build on the current advice and support framework.  Comprehensive training.  Local carers centres provide information and support.  Creating a dedicated team to educate and inform Guardians.  Current Code of Practice seen as complicated.  Educating the public through schools

What sort of advice and support should be provided for guardians?

Do you have view on who might be best placed to provide this support and advice?

YES - 62

 Persons with lived experience, professionals, person(s) presenting application (eg solicitors) .  Must be independent of institutions.  Able to maintain good practice.

NO - 27

 No reasons given.

Do you think there is a need to provide support for attorneys to assist them in carrying out their role?

YES - 99

 Invest in whole process.  Training to change current practice.  System for checking suitability of guardians + attorneys.  Use of various training platforms.  Adopting standard practice and compulsory training.  A mixture of public awareness materials.  Act to detail responsibilities of attorneys.

NO - 6

 Compulsory measures may deter people acting as attorneys.

Order for cessation of a residential placement/creation of a short term placement/13ZA. Do you agree that an order for the cessation of a residential placement or restrictive arrangements is required in the AWI legislation? . 101 responses

YES - 88

 Necessary but rarely used – perhaps when section 13ZA used inappropriately.  More clarity around process needed.  Independent advocacy needed.  Clarity on alternative to placement needed. NO - 13  More appropriate to apply for guardianship.  Robust and effective supported decision making is the answer.

Do you agree that there is a need for a short term placement order within the AWI legislation? Does our approach seem correct or are there alternative steps we should take? YES - 95

 Significant majority in favour of a short term placement in principle BUT  Uses different approach similar to short term detention orders under Mental Health Act?  Must ensure such an order does not lead to longer term order by default.  Safeguards needed to ensure not a short cut to guardianship.  Concern about resources needed – without these no order can be given effect.  Any action must be taken in the context of full support for decision making for the adult.

NO - 9

 Supported decision making is the answer.  Not enough detail provided to support the proposal.

Do you consider there remains a need for section 13ZA of the Social Work (Scotland) Act 1968 in light of the proposed changes to the AWI legislation? YES - 49

 But use should be restricted to provision of care services to enable people to stay at home.  Still need flexibility 13ZA provides but requires updated guidance and consensus across the country.  Could work well in conjunction with supported decision making.  Needs to remain in some form – must not reach stage where judicial authorisation is necessary to provide care and support for adults with impaired decision making ability.

NO - 38  13ZA lacks sufficient safeguards.  Proposed changes should cover all eventualities.  Contravenes spirit of human rights agenda.  With proper supported decision making there is no need for 13ZA.

Order for cessation of a residential placement/restrictive arrangements will be taken forward. Clear need for short term order – but how such an order would be granted and operate needs much more thought. Need to address concerns around 13ZA. Once we have clarity around the new nature of guardianship, the form of short term orders and the shape of support for decision making, easier to see context in which a version of 13ZA might operate.

SUMMARY

Should there be clear legislative provision for advance directives in Scotland or should we continue to rely on common law and the principles of the AWI Act to ensure people’s views are taken account of?

Yes - 239

 Provide peace of mind knowing that an individual wishes would be respected and implemented.  Provide clarity and direction to both relatives and clinicians in a terminal situation.  Important a clear framework is provided for how advance directives are lodged, maintained communicated and invalidated.  As per Council of Europe recommendations (2009) 11, an advance directive should be permitted for any matter, ie not limited to health and welfare decisions.

No - 10

 It would complicate an already confusing system to navigate.  There is little understanding of the current legislation and this should be addressed first.

If we do make legislative provision for advance directives, is the AWI Act the appropriate place? Yes-194

 Logical and relevant place  Important for statutory provisions to be codified in the same place.  The Mental Health (Care and Treatment) Act 2003 is not sufficient to address advance directives.  It would simplify and streamline the processes.  Existing framework around power of attorney and guardianship order would be appropriate for the recording and scrutiny of advance directives.

No-32

 There should be a wide public debate and a consultation in its own right on advance directives.  It is a complex area and it should have its

• wn legislative framework.

 Reliance should still be placed on the common law and principles of AWI.

Adjustments to authorisation for medical treatment – In particular we are proposing to enhance existing powers so that if an adult does not have capacity but requires treatment for a physical illness they can be prevented from leaving a hospital setting. Proposals include the ability for 2nd opinions, consultations, right of appeal, regular reviews, ability to revoke the certificate and the setting of an end date.

Yes – average 80%

 Overall consensus regarding proposals to reform (average response rate of 110 per question – 1/3 of all returns).  Consider when an adult should be transported to hospital – urgent cases only?  Integrated form – consider separating ‘treatment’ and ‘depravation of liberty’ within a hospital setting’  Simple clear procedures which are transparent and inclusive  Detailed safeguards to minimise the ability to prevent an adult from leaving hospital beyond need.  Targeted guidance and enhanced training needed.

No

 Preference for ‘consent only’ when it comes to treatment  Would a judicial route be a more appropriate vehicle if an adult need be removed to hospital  Review period – 28 days potentially too long as recovery varies  End Dates – difficult to predict so how will this work  2nd opinions – query whether this should be a medical opinion – MHO instead ?  Only question which has no overall consensus (50/50 split) centres on whether the range of professionals who can authorise a s.47 should be expanded

Consultation on AWI in health research

 CSO aware of issues for over a decade – opportunity to address concerns.  115 individuals and organisations commented on this topic  Broadly there was a divide between health professionals who recognised the issues but did not always agree with the proposed solution. Some other respondents were also in the same space.  However many respondents were opposed to any health research involving adults with incapacity, or at least where they had not consented to being involved.

Responses

 Q1 – two doctors to authorise? 30% support, 5% didn’t, others unclear.  Q2 – When drafting power of attorney should individuals be encouraged to articulate wishes on health research? 60% support, 5% didn’t, others unclear.  Q3 - Should there be provision for participation in emergency research where appropriate? 20% support, 13% didn’t, others unclear.  Q4–Should authorisation be broadened to allow studies to include both adults with incapacity and adults with capacity in certain circumstances? 59% support, 16% didn’t, others unclear.

Responses

 Q5–Should clinical trials of non-medicinal products be approached in the same way as clinical trials of medicinal products? 40% support, 40% didn’t, others unclear.  Q6– Should there be a second committee in Scotland able to share the workload and allow for appeals to be heard? 30% support, 51% didn’t – many asked for greater clarity.  Q7- Should part 5 of the act be made less restrictive? 46% support, 18% didn’t, remainder unclear.  Overall conclusion – greater clarity is required/ a second consultation.

 Change of name of legislation/guardians.  Removal of substituted decision making altogether.  Work to be done on supported decision making regime before any legislative change made.  Independent advocacy be given same status as in mental health legislation.  Significant investment in training needed.  Wider review of AWI, Mental Health and Adult Support and Protection legislation moving to unification of the law in this area.

Are there any other matters within the AWI legislation that you feel would benefit from review or change?

112 responses from a wide range of individuals and organisations: Examples

 Deprivation/restrictions on liberty  Graded guardianship/forum for AWI casework  Support and training for attorneys and guardians Work to continue in house on other aspects of reform. Involvement of service users/carers and professionals essential in getting things right. Changes will be tested out with stakeholders in early 2019. Aim of legislation within current Parliament session.

SUMMARY

Short term working groups in the autumn looking specifically at;

@AWI-reform QUESTIONS?