MENTAL HEALTHPOLICY WALES

Consultation on the Mental Capacity Advocacy Service in Wales

August 2005

IMPROVING HEALTH IN WALES

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Consultation on the Independent Mental Capacity Advocate Service inWales

Contents Page 1

1. Introduction Page 3

2. Summary Page 4- of the Mental Capacity Act 2005- of the Independent Mental Capacity Advocate (IMCA)

Service- Fit with existing provision

3. Operation of the IMCA Service Page 6- Funding and Costs- Commissioning and Funding the IMCA Service

- Option 1 – The Assembly could directly commission a smallnumber of organisations to provide the service

- Option 2 – Local authorities or Local Health Boards couldcommission individual advocacy

- Option 3 – Local authorities or Local Health Boards couldcommission independent organisations

- Consultation questions on commissioning- National Standards- Consultation questions on national standards- Training and Skills- Consultation questions on training and skills- Independence- Consultation question on Independence- Monitoring and Accountability- Consultation questions on Accountability

4. Functions of the Independent Mental Capacity Advocate Page 11- Consultation question on Functions- Challenging the decision maker- Consultation questions on challenging the decision maker- Additional functions- Consultation questions on additional functions of the IMCA- Care Reviews- Consultation questions on reviews

5. Serious Medical Treatments Page 13- Option 1- List of specific treatments- Option 2- Focus on the characteristics of the decision to be taken- Option 3- to combine 1 and 2- Consultation questions on regulations on serious medical treatment

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6. Extending the Independent Medical Capacity Advocate Page 14(IMCA) Scheme

- Financial constraints- Legal difficulties with extending the service- Extending the service to other groups and situations- Options:

- Option 1 – do nothing- Option 2 – Revise the assumptions regarding the IMCA- Option 3 – Provide an IMCA in cases of dispute- Option 4 – Provide an IMCA where requested by one of the parties- Option 5 – Extra care housing- Option 6 – Allowing the commissioner of the service to determinepriorities- Other options

- Consultation questions on options

Annex A Page 19

List of sections on the independent mental capacity advocate with regulationmaking powers

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CONSULTATION ON THE INDEPENDENT MENTAL CAPACITYADVOCATE SERVICE IN WALES

1. INTRODUCTION

1. The Mental Capacity Act 2005 provides a statutory framework for peoplewho may not be able to make their own decisions for example because ofa learning disability, an illness such as dementia or brain injury or mentalhealth problems. It sets out who can take decisions, in which situations,and how they should go about this.

2. The Act creates a new service – the Independent Mental CapacityAdvocate (IMCA). It’s purpose is to help vulnerable people who lackcapacity who are facing important decisions made by the NHS and LocalAuthorities (LAs) about serious medical treatment and changes ofresidence - for example, moving to a hospital or care home.

3. NHS bodies and Local Authorities will have a duty to consult the IMCA insuch decisions involving people who have no family or friends. (The IMCAdoes not apply to people who have an Enduring Power of Attorney, aLasting Power of Attorney (LPA) or a deputy under the Act.)

4. The Act sets out the minimum requirements for the IMCA service. Duringits passage in Parliament the UK Government committed to consulting withinterested parties about how the regulations making powers on the IMCAshould be used and on the operation and implementation of the service.The aim will be to keep statutory regulation to the minimum.

5. The purpose of this paper is to carry out that consultation. You have until31st October 2005 to let us have your comments. Please submit yourresponse to Elaine Young, Community Primary Care & HealthServices Policy Division, Welsh Assembly Government, CathaysPark, Cardiff, CF10 3NQ

6. The paper is set out in four parts:• Questions about the operation of the IMCA service – including issues

such as funding, commissioning the service, standards, training andskills needed, how to ensure the independence of the IMCA, andmonitoring and accountability

• Questions about the functions of the IMCA• Questions about definitions of serious medical treatment• Questions about extending the IMCA scheme

7. Specific questions on which views are sought are highlighted in bold textwithin this document. These questions address the main issues to beresolved through this consultation process. You are invited to respond onall or some of these questions. You should not however feel constrained tolimit your comments to just these questions.

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2. SUMMARY

Summary of the Mental Capacity Act 2005

8. The Mental Capacity Act 2005 provides a statutory framework for peoplewho may not be able to make their own decisions for example because ofa learning disability, an illness such as dementia or brain injury or mentalhealth problems. It sets out who can take decisions, in which situations,and how they should go about this.

9. The Act enshrines in statute current best practice and common lawprinciples concerning people who lack mental capacity and those who takedecisions on their behalf. It replaces current statutory schemes forenduring powers of attorney and Court of Protection receivers withreformed and updated schemes – a new Lasting Power of Attorneycovering health and welfare issues as well as financial issues, and a newCourt appointed deputy

10. The Act covers England and Wales and received Royal Assent on 7 April2005. Implementation is planned for 2007.

Summary of the Independent Mental Capacity Advocate (IMCA) Service

11. The Act creates a new safeguard - the Independent Mental CapacityAdvocate (IMCA) - to give extra protection to the most vulnerable peoplewho lack capacity when major decisions are taken.

12. The Mental Capacity Bill introduced to Parliament in June 2004 includedprovision for an “independent consultee” in response to concerns about alack of safeguards for particularly serious health and welfare decisions inthe draft Mental Incapacity Bill published in June 2003. The name of theindependent consultee service and the functions were changed during thepassage of the Bill, to reflect concerns that independent advocacy was keyto both empowering and protecting the most vulnerable people who lackcapacity.

13. Under the Act, decision-makers in the NHS and LAs,(for example, doctorsand social workers), will have a duty to consult the IMCA in relation todecisions about:• serious medical treatment• moving – other than on a short term basis – to accommodation in a

hospital or residential accommodation arranged by a local authority, forexample in a care home, sheltered housing, housing association orhostel accommodation or between such establishments (except wherethe move is a requirement under the Mental Health Act 1983)

• further circumstances as may be provided for in regulations.

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It is also intended that the IMCA will be involved in an annual review of thedecision to move the person into long-term residential care (see paras 50-53).

14. NHS bodies and LAs will have a duty to consult the IMCA for the mostvulnerable - people who have no family or friends. (People who have anEnduring Power of Attorney, a Lasting Power of Attorney (LPA) or adeputy under the Act will not have access to the IMCA)

15. The UK Government has estimated that around 15 per cent of people inEngland and Wales who lack capacity when major decisions need to bemade about their living arrangements, or medical treatment, have nofriends or family to be consulted.

16. The Act sets the minimum requirements for providing the new safeguard.Importantly, the Act provides for a broad regulation making power toextend the IMCA beyond these groups and circumstances (see section 6).

Fit with existing advocacy provision

17. It is important to note that the Welsh Assembly Government does notregard the new IMCA service as a replacement or substitute forindependent advocacy as it is commonly understood and practised in thesocial care sector. We envisage that the IMCA service will build on goodpractice in the advocacy sector, and where possible, it will be embedded inexisting advocacy provision. We want to create a statutory service of aconsistently high quality and we do expect the service to display the goodfeatures of advocacy at its best.

18. There are many different types of advocacy available – such as non–instructed advocacy and citizen advocacy. Many people take the view thatthe conventional independent advocacy role is to represent the person’swishes and feelings, but not to influence the decision itself. The role of theIMCA goes further than this, it includes not only representing andsupporting the person but also bringing to the attention of the decision-maker all factors that are relevant to the person's best interests; andchallenging the decision, where necessary.

19. We want to consider how the IMCA service fits with other statutoryadvocacy provision. Community Health Councils already provides supportfor people who wish to use the NHS complaints system. The UKGovernment’s draft Mental Health Bill also includes provision forIndependent Mental Health Act Advocates for patients being treatedcompulsorily for their mental disorder under arrangements in that Bill. Wewill also want to consider how the IMCA service fits with the outcome ofthe recent consultation on safeguards needed in response to the“Bournewood” judgement.

20. We want to ensure, as far as possible, that the IMCA:• provides a seamless service

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• does not overlap with other statutory services• does not result in a client having to change advocates simply because

they now qualify for “statutory” advocacy.

3. OPERATION OF THE IMCA SERVICE

Funding and Costs

21. Included in the Regulatory Impact Assessment was an estimate that therunning costs of the IMCA scheme will be around £390K per annum forWales. It is important to make clear that this estimate is based on planningassumptions about the cost and frequency of cases. There are manyuncertainties here. We want to test out and refine our assumptions as partof the consultation and we will be prepared to develop a different costsprofile – within the overall budget available – if that is suggested by theconsultation.

22. The Act currently provides for decisions involving serious medicaltreatments and long-term care moves for people who have no friends orrelatives. Our present assumptions are that we expect there to be about960 decisions each year in Wales. This covers 360 decisions aboutserious medical treatment and 600 decisions about care moves. Theseestimates are pro-rata of figures estimated for England.

23. The cost of providing an IMCA for the 960 decisions involving people whoare unbefriended is estimated at £195k. (This has been calculated basedon costing standard time for advocacy, additional costs where cases aredisputed and the costs of being involved in annual reviews) The standardadvocacy costs are based on a unit cost of around £100 per decision.This includes costs for the individual advocate taking an average of 4hours per decision, plus management and training costs. (Additional costsfor NHS and social care professionals taking decisions involving peoplewho lack capacity were included in the Regulatory Impact Assessment forthe Mental Capacity Bill).

24. The £195k includes estimates of additional costs of £39K where thesecases are disputed. This includes the costs of an estimated 162 caseswhere the original decision is disputed (estimated at around £100 percase), and 2 additional cases going to court, with costs estimated ataround £11,300 per case.

25. We have estimated costs of involving the IMCA in annual care reviews ataround £60K. Here we have assumed that involving an IMCA in a carereview will take an average of 4 hours per review for each year.

26. This leaves around £195K out of the budget of £390K to cover anyextension of the scheme under the power to make regulations, followingthis consultation (see “Section 6”).

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Commissioning and Funding the IMCA Service

27. We want to consult on the options for provision of the IMCA services.There are many different models available. A key principle in makingarrangements for the provision of these services is that the IMCA should,so far as practicable, be independent of any person responsible for the actor decision taken (see paras 40 & 41 below).

28. There are three possible options for commissioning the IMCA servicewhich we have considered:

Option 1: The Welsh Assembly Government could directly commission a smallnumber of organisations to provide the service

29. Under this model, there would be a small number of providerorganisations, commissioned, paid and monitored by Welsh AssemblyGovernment. The advantage of this model is that it would provide a moreconsistent national service with an opportunity for all the providerorganisations to work together and learn from each other. Thedisadvantage of this option would be that there would be no localinvolvement in commissioning (from LAs or LHBs) and there would befewer advocacy organisations providing the IMCA service.

Option 2 – LAs or LHBs could commission individual advocates

30. A second option would be for LAs or LHBs to commission individualindependent advocates to provide the IMCA service. This would maximiseflexibility. However, there are disadvantages to this approach, in ensuringsuitable expertise in dealing with all people who lack capacity, difficulties inmaintaining independence, ensuring adequate supervision and support,and around consistency of approach.

Option 3 – LAs or LHBs could commission independent organisations

31. A third option is that the IMCA service could be provided by localindependent organisations, and commissioned by LHBs or local authoritystatutory service providers or jointly by both. Under this option, LHBs orLAs would be responsible for commissioning IMCA services. We wouldexpect commissioners to ensure the provision of the IMCA service througha tendering process. Using a competitive approach, commissioners wouldprepare service specifications and invite agencies to tender to operate theservice. Service specifications could be drawn up to suit the localcircumstances and incorporate any agreed national standards (see para33-36 below) for IMCA services.

32. We would welcome views on these three options and also whether thelead responsibility for commissioning this service would sit better with LAsor LHBs in options 2 and 3. The Welsh Assembly Government would alsobe interested to receive examples of effective tendering arrangements andcontracts between the statutory sector and independent advocacy bodies.

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Consultation questions on Commissioning:

• Which of the three options do you think is the best approach forcommissioning the IMCA service?

• If commissioning is to take place locally, is it better to expect andfund LAs or LHBs to undertake this?

• What aspects of the service should be compulsory and whatshould be down to local discretion?

• How should this fit with existing and planned advocacy provision– how should whichever body is tasked with commissioning theservice best decide what IMCA services are required in eachlocality?

National Standards

33. We want to ensure IMCA services are of a satisfactory quality. We want toconsult on whether there should be All Wales standards in relation to theIMCA service; and whether individual IMCAs or the advocacyorganisations which contract to supply them should have to meet agreedstandards.

34. One option would be to require individual IMCAs to meet agreedstandards. The requirement could be set out in regulations made by theAssembly, supplemented as appropriate by guidance as part of the criteriafor appointing IMCAs. A second option would be to require theorganisations that contract to provide IMCAs to meet agreed standards.Only organisations who meet these standards would then be able totender for contracts. A third option would be to include standards for boththe individual IMCA and the provider organisation.

35. We want to consult on how these standards should be set out - e.g. inregulations, and guidance for individual IMCAs or model contracts fororganisations. We also want to consult on what those standards should be.Our current thinking is that we should set standards around training andqualifications, but there should be flexibility for local discretion to coverother aspects of the service.

36. NHS Complaints Advocacy Services, provided through Community HealthCouncils already operate under an agreed set of standards and there arealso national standards for the provision of children’s advocacy services.We would also welcome views on the extent to which there should be aminimum set of standards that cover all statutory advocacy services (e.g.complaints advocates, IMCA and the proposed IMHAA so that there arecommon criteria for independent advocates)

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Consultation questions on National Standards:

• Should there be national standards in relation to the IMCA service?

• If yes, should the national standards apply to:a) individual advocatesb) to organisations orc) to both?

• What should the standards cover? For example, if organisationalstandards should be applied, should these be general ones orspecific to advocacy groups?

Training and Skills

37. We want to achieve a high quality IMCA service and a highly trainedworkforce. This points to the need for a recognised training programme,which should be successfully completed by all IMCAs. We are aware thatthere is no standard training for independent advocates, but that manyadvocates have already completed detailed training courses and havemuch experience and skill in supporting and representing people who lackcapacity.

38. We want the IMCA service to be able to support and represent all thedifferent client groups affected – people with a learning disability, thosewith dementia, brain injury or mental health problems. It is important thatcommissioners are able to draw of services of independent advocates whohave a broad range of experience of working with people in all thesedifferent groups; and who are trained to work with people who lackcapacity where they are unable to communicate or where communicationis very difficult. We also want IMCAs to be able to challenge decisionmakers where appropriate and to look at alternative options. This points toadditional skills in negotiating with decision makers and the need for legaltraining. There may also be additional training requirements where theIMCA is involved in serious treatment decisions.

39. Our current thinking is that the regulations should require an individualIMCA to meet agreed skills and training levels. One option would be tosupport the development of a modular training programme. There may besome scope for combining this with any planned training for the IMHAAsproposed in the draft Mental Health Bill, so that individuals would be ableto train to undertake both roles, if they wished to do so. We would want toencourage a joined up approach to all advocacy training, as far aspossible.

Consultation questions on Training and Skills:

• What current training is considered most appropriate for the IMCAservice?

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• What learning should be covered? Should the training allow forspecialist expertise in certain areas e.g. serious medical treatments,legal training or communication difficulties?

• Who should develop, deliver and accredit the training?

• To what extent should IMCA training link with other programmes,including that of the proposed IMHAAs? How should this best bedone?

Independence

40. The Mental Capacity Act provides that as far as practicable, IMCAservices should be independent of the health and social care professionalsmaking the decisions. The advocacy sector has experience of negotiatingservice level agreements that reinforce independence and leave theagency and the individual advocate free to disagree with the NHS andsocial care providers who commission them.

41. 'Independence' is already a well-recognised concept in social care. Thereare various independent functions under the Children Act - independentvisitors to homes under section 33, as well as independent people involvedin investigating complaints under the Children Act. There are alsoindependent Lay Visitors who support people interviewed by the policeunder the Home Office.

Consultation questions on Independence:

• How should the independence of IMCAs be built into the service?

• How do we build independence into any regulations and/orcommissioning guidance or contracts?

Monitoring and Accountability

42. Good management practice and the expectations of commissioners wouldrequire effective monitoring arrangements to be a key responsibility of theIMCA services. We envisage that IMCAs would be accountable to boththeir service users and to their commissioners and should be monitoredthrough their contractual arrangements.

43. National Assembly for Wales inspectorates (SSIW, HIW and CSIW) have akey role in driving forward improvements in quality and effectivenessacross health and social care. Respondees are invited to consider whatrole these inspectorates should have in respect of monitoring IMCAservices.

44. We consider that the commissioning organisation should of course play akey role in setting both quantitative and qualitative service standards bywhich services provided by IMCAs can be monitored. We want to consult

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on whether there should be national standards (as set out in paras 33-36),in order to provide consistency across the different advocacy providers.Should guidance set out some key objectives for monitoring – or shouldthis be left to commissioners?

45. As with all health and social services it is important that there is aneffective complaints procedure for when advocacy services are do notdelivered to a standard which would normally be expected. The processfor handling complaints will depend on the eventual option chosen for thecommissioning of the service. However respondees are invited to considerhow commissioners can ensure that complaints procedures, in particular inthe early stages of complaints investigations for advocacy are at least asrobust as those in respect of NHS or LA provided services.

Consultation questions on Accountability:

• Should guidance specify key objectives for monitoring the IMCAservice or should this be left to commissioning organisations?

• Who should monitor compliance with standards? Should AssemblyInspectorates play a part in monitoring the IMCA services? If yes,what role should they play, subject to them having the necessarylegal powers?

• How should complaints made against an IMCA service beinvestigated? Whose role should it be?

4. FUNCTIONS OF THE INDEPENDENT MENTAL CAPACITY ADVOCATE

46. The key functions of the IMCA are outlined in section 36(2) of the Act.They are:

- representing and supporting the person who lacks capacity- obtaining and evaluating information- ascertaining the person’s wishes and feelings, as far as

possible- ascertaining alternative courses of action – for example,

looking at different care arrangements or residential homes- obtaining a further medical opinion, if necessary.

47. Section 36(1) and 36(2) allows the National Assembly for Wales to makeregulations in relation to Wales concerning the steps that the IMCA shouldtake in undertaking these functions. We want to consult on whether weshould impose further requirements in regulations or give guidance on bestpractice in achieving the functions already listed in section 36(2). A Codeof Practice under Section 42 of this Act will be issued by the LordChancellor (after consultation with the Assembly) and will include guidancefor IMCAs.

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Consultation question on Functions:

• What, if any, are the steps which we need to outline? Should thisbe in regulations or should the Code of Practice issued underSection 42 or guidance set out best practice in achieving thefunctions listed in Section 36(2)?

Challenging the decision maker

48. Section 36(3) of the Act provides for regulations to make provision for thecircumstances in which IMCA can challenge, or assist in challenging thedecision maker. We want the IMCA to be able to assist the person wholacks capacity to obtain a second opinion; or to obtain legal advice as towhether to make a formal complaint or to take a case to Court.

Consultation questions on challenging the decision maker:

• What information and requirements do we need to set out abouthow to challenge, e.g. local complaints procedures / 2nd opinions /access to Court of Protection?

• Should this be in regulations or should the Code of Practiceissued under Section 42 or guidance set out best practice inchallenging the decision maker?

• Should IMCAs be able to bring simple cases before the Courtwithout the need for legal representation?

• Should IMCAs be able to challenge the original decision that theperson lacks the capacity to make the decision in question?

Additional Functions

49. Section 41(1) of the Act provides that regulations may expand the role ofthe IMCA. We want to consult on whether there are additional functionswhich should be included in the regulations.

Consultation question on additional functions of the IMCA:

• Are there essential additional functions which should becovered in regulations?

• Should local organisations have discretion in how they useadditional functions?

Care Reviews

50. We want to examine how to involve the IMCA in an annual review forpeople who are in long-term care placements and who have no family orfriends, where an IMCA has been involved in the original decision.

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51. For people who are in residential care and funded by Local Authorities theGuidance on Unified Assessment, issued under Section 7 of the LocalAuthority Social Services Act 1970 already places an expectation to reviewcare placements. We think that the best approach would be to amend theguidance to involve an IMCA in this annual review.

52. For people in a NHS context, there is no equivalent statutory guidance.The Welsh Assembly Government proposes imposing a duty on thedecision maker to review care placements for incapacitated people whohave no family or friends using directions under sections 16BB and17 ofthe National Health Service Act 1977.

53. During the Parliamentary process, MPs questioned where an emergencydecision is taken without involving the IMCA, whether the IMCA should beinvolved in reviewing any ongoing decision. We want to consult on thisissue as well.

Consultation question on Reviews:

• We welcome views on how best to include the IMCA in reviewsof care placements through amending statutory guidance toLAs and issuing directions to NHS bodies.

• Where an emergency decision is taken without involving theIMCA, should the IMCA should be involved in reviewing anyongoing decision?

5. SERIOUS MEDICAL TREATMENTS

54. Section 37(6) of the Act provides a general definition of “serious medicaltreatment” – it means “treatment which involves providing, withholding orwithdrawing treatment of a kind prescribed by regulations”. The WelshAssembly Government wants to consult on the detail of what constitutes“serious medical treatment”. We have identified three options:

Option 1: List of specific treatments

55. One option would be for regulations to set out a list of specific treatmentssuch as heart operations where an IMCA should always be involved forpeople with no family or friends. It may be difficult to produce a definitivelist which fits all the situations. A key risk with a list is that medical practicecan change so that definitions can become out of date. We would want tobe able to add or remove interventions as new treatments are developed.

56. Treatment which is regulated by Part 4 of the Mental Health Act 1983(“1983 Act”) cannot be included in the definition of “serious medicaltreatment” under the Act (because the 1983 Act provides its ownsafeguards.) For the most part this means treatment (of all types) formental disorder given to patients who have been detained under the 1983

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Act. But it also includes treatments for mental disorder to which specialsafeguards apply under section 57 of the 1983 Act, whether or not thepatient concerned is detained under the Act. At present, thosetreatments are surgical operations for destroying brain tissue or fordestroying the functioning of brain tissue (“psychosurgery”) and thesurgical implantation of hormones for the purpose of reducing male sexdrive. In neither case can the treatment be given without the patient’sconsent, even if the patient lacks capacity. Therefore it would not benecessary to include these treatments in any list of “serious medicaltreatments”.

Option 2: focus on the characteristics of the decision to be taken

57. Alternatively, regulations could focus on the characteristics of the decisionto be taken. This could include, for example, whether the treatment wouldbe irreversible or where the benefit versus risk is finely balanced. We aremindful that the level of seriousness of a particular treatment can varyaccording to individual circumstances; for example, choice between twotypes of treatment where one might be more risky but has a highersuccess rate. For example, choosing between surgery or chemotherapyfor treating cancer.

Option 3 – to combine 1 and 2

This would involve regulations setting out both a definitive minimum list oftreatments AND the characteristics of other treatments not on theminimum list.

Consultation questions on Regulations on Serious Medical Treatment

• what constitutes “serious medical treatment”?

• should regulations set out a definitive list of treatments. If so,what should they include?

• Should regulations focus on the characteristics of the decisionto be taken?

• Should the regulations include both a definitive minimum listof treatments AND the characteristics of other treatments noton the minimum list?

6. EXTENDING THE INDEPENDENT MENTAL CAPACITY ADVOCATE(IMCA) SCHEME

58. Section 41 provides that the IMCA scheme can be extended by regulationsmade the National Assembly to other sets of circumstances. We areaware that many stakeholders would like to extend the groups of peoplewho qualify for the IMCA service beyond those who have no friends orfamily to support them. We want to consult further on whether there are

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other particularly vulnerable people who lack capacity who may benefitfrom an IMCA or whether there are other circumstances or situationswhere the IMCA should apply, whilst ensuring that the IMCA safeguard istargeted effectively and works on the ground.

59. In considering possible options for extension of the scheme, we need totake into account a number of concerns. We want to ensure that as far aspossible:• the policy is proportionate, affordable and workable• statutory regulation is kept to a minimum• any options fit within the agreed budget guidelines set out above (i.e.

within the £390k available)• additional situations or groups can be defined in law – we want to

avoid creating a duty which cannot be monitored, where it would bedifficult to apply sanctions if the duty was neglected.

• the service does not hinder the vital role that family carers play incaring for and representing their family members

• we give priority to those most in need.

Financial Constraints

60. We will need to exclude any options where the estimated expenditure isabove the agreed budget profile. For example, there would be significantresource implications if we were to extend the safeguard to the wholecohort of people who lack capacity for all decisions about serious medicaltreatment and care moves. We estimate that this would involve anadditional 5820 decisions per annum and that it would cost an additional£1.182m. This is simply not affordable given the budget profile.

Legal difficulties with extending the Service

61. There are also legal difficulties with extending the service. The UKGovernment’s original aim when the policy was initially being developed onthe IMCA was that the safeguard should cover a broad range of groupsand situations. For example, they considered where:• the person who lacks capacity has no ascertainable wishes or feelings

and is compliant• the action to be taken appears to be contrary to the wishes and feelings

of the person who lacks capacity• there is a dispute about serious health and social care decisions

62. However, it has not as yet been possible to identify adequate legaldefinitions in these areas. In all these situations, the onus would be on thedecision maker to determine that the situation e.g. the dispute existed, andthat the IMCA should be involved in the decision. Without a clearly defined“legal hook”, there is a risk of creating a duty which cannot be monitoredand where it would be difficult to apply sanctions if the duty was neglected.We wish to talk to stakeholders to establish whether we can better andmore precisely describe the circumstances so that they can besatisfactorily expressed in law.

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63. There may also be legal issues around extending the service into privatesituations between families and the people who lack capacity. This couldconflict with Article 8 of the ECHR and the right to a private life. Therefore,the intention is that the IMCA should only be involved in decisionsinvolving the NHS and LAs.

Extending the service to other groups and situations

64. We want to consult on whether there are other people who lack capacitywho may benefit from an IMCA, beyond those who have no family orfriends. We are aware that the most vulnerable may not always fit neatlyinto specific groups. For example older people who are in situations wherethere is a risk that their views and wishes may not be taken into account bytheir families and carers, and in which elder abuse can occur. We wouldwelcome views on what makes someone who lacks capacity but hasfamily and friends particularly vulnerable.

65. During the Bill’s passage, questions were raised about whether the IMCAmight be made available to families and carers who were having troublenavigating the health and social care systems when they were involved indecisions about care and treatment. Whilst the primary role of the IMCA isto support the person who lacks capacity rather than their families andcarers, we are aware that some family members are unable to acteffectively as an advocate for the person lacking capacity, or arevulnerable themselves – for example, older carers of people with learningdisabilities.

66. We also want to consider whether there are any specific situations whichwe would want to extend the IMCA service to cover.

Options

67. We have considered a number of options.

Option 1: do nothing

68. This would involve providing the IMCA service only to people who have nofamily or friends, at an estimated cost of £195K.

Option 2: Revise the assumptions regarding the IMCA

69. This option would be to revise our estimate of the number of persons orthe length of time or costs of advocacy set out in paragraph 21-26. Thiscould potentially provide a more intensive service for the most vulnerablegroup – those who have no family or friends. However, this might use upthe remaining available resources. Views are welcomed on theassumptions used.

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Option 3: Provide an IMCA in cases of dispute

70. This option would involve extending the IMCA service to cover disputesbetween the individual, family and health or social care services fordecisions about serious medical treatment and long term care moves.This might include disputes about diagnostic tests which might benefitother members of the family; for example a genetic test where there aredisagreements in the family about whether the person should have thetest. Or it might include disputes about whether a person who lackscapacity can stay in their own home with a support package or could moveinto residential care. Costs of this option depends on the assumed numberof disputes but is estimated to be in the range £150k to £294k and viewsare welcomed on the likely numbers involved.

Option 4: Provide an IMCA where requested by one of the parties

71. A fourth option would be to involve an IMCA in decisions about seriousmedical treatments and care moves wherever one is requested by theperson who lacks capacity or the decision maker.

72. The Welsh Assembly Government is also aware that some stakeholdersare concerned that we should not extend the IMCA service under theregulation making powers on a compulsory basis to situations where thereare family members. We would not want to hinder the vital role that familycarers play in caring for and representing their family members, and webelieve that where people have successful loving and supportiverelationships, the obligatory use of IMCAs would be neither helpful, nor aneffective use of resources. But we also recognise that some familymembers would welcome the support of an IMCA. Costs of this optiondepends on the assumed number but is estimated to be in the range£162k to £408k and views are welcomed on the likely numbers involved.

Option 5: Extra care housing

73. The Act provides for the IMCA to be involved in decisions about seriousmedical treatments and decisions about moves into long–term residentialcare which is either arranged by the NHS or by LA social services.However, this focuses on people moving into residential care, whereas theWelsh Assembly Government is increasingly focusing on supportingpeople in their own homes through home care services and in extra carehousing (ECH).

74. This option would seek to extend the IMCA safeguard to people who lackcapacity who are supported in ECH – for example, where they are beingevicted. Costs of this option depends on the assumed number but isestimated to be in the range £9k to £30k and views are welcomed on thelikely numbers involved.

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Option 6: Allowing the commissioner of the service to determine priorities

75. One possible option would be to provide for some form of discretionaryuse of the IMCA provisions by local authorities and LHBs. This wouldenable LAs and LHBs to determine who are the most vulnerable peoplewithin their localities and to commission services accordingly. This wouldbe similar to the powers in the Children Act 1989 which require theresponsible authority to appoint an independent reviewing officer (IRO) inconnection with the review of each case of a child who is looked after orfor whom accommodation is being provided. In practice, the IRO is usedin much wider situations than just when accommodation is being provided.This would involve giving the commissioner of the service the full budget of£390k to determine priorities.

76. We would welcome views on whether it would be helpful to set out thetypes of situations or groups who could be given priority in regulations or inguidance.

Other options

77. During the passage of the Bill the UK Government (Baroness Andrews)said that we would consider whether to use the IMCA as the independentthird person when there was no family member or friend to be consultedabout the person’s involvement in a research project. The Governmentnow thinks that this should be covered in discussions about the researchregulations and guidance.

Consultation questions on Options

• Which of the above options do you think is the best way ofextending the IMCA service, bearing in mind the budgetaryconstraints?

• Are there other options which we should consider? In particular:

• Should we seek to broaden the groups who qualifyfor an IMCA?

• Should we seek to extend the IMCA to coveradditional situations and circumstances?

• How should we prioritise to meet those most inneed?

• What makes someone who lacks capacity but hasfamily and friends particularly vulnerable?

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Annex A

List of sections on the Independent Mental Capacity Advocate withRegulation making powers

The Act provides the power to make regulations in the following sections:

• the appointment of IMCAs (section 35 (2))

• the functions of the IMCA (section 36)

• to define “serious medical treatment” (section 37(6))

• to adjust the obligation to make arrangements to provide IMCAs undersection 35 (section 41 (1)(b))

• to prescribe additional circumstances in which the IMCA’s advice must ormay be sought (section 41 (1)(a))

• to define the NHS bodies - Section 37(7) and section 38(8). Sections37(7) and 38(8) provide that regulations will define the particular NHSbodies who will become subject to the duty to seek advice in connectionwith serious medical treatment decisions and provision of accommodation.We intend that this will cover the bodies responsible for direct provision orfunding of treatment or care, as appropriate. For example, in Wales, thiswould include the Local Health Board responsible for commissioning thetreatment. Where the treatment is not provided directly by an NHS bodyi.e. it is provided by an independent hospital but funded by an NHS body,the responsibility will lie with the commissioning body in the NHS.

• to expand the role of the IMCA in relation to persons who lack capacity(section 41 (1)(a))

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