House of Lords - Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005

Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005 Contents

Chapter 5: Advocacy and Advance Planning

163. The general principles enshrined in section 1 of the Act were intended to underpin a shift in public attitudes and practice. But the Act also makes specific provision to facilitate decision-making by or on behalf of people who may lack capacity. These are the structures designed to enable the views and wishes of P to be taken into account when P lacks capacity to make decisions. This chapter considers their implementation.

Independent Mental Capacity Advocates

164. The Act created the role of 'Independent Mental Capacity Advocate' (IMCA). In certain circumstances the Act requires that an IMCA is provided, for example where serious medical treatment or accommodation in a hospital or a care home is being proposed for a person who lacks capacity and has no-one to speak on their behalf. Where an application is being made for an authorisation under the Deprivation of Liberty Safeguards an IMCA must be appointed if there is not an appropriate person to consult. Local authorities have discretionary powers to appoint IMCAs in cases of care reviews or adult protection.

165. The creation of the IMCA role was welcomed: "It has ensured that people who lack capacity have had their voice heard and that where appropriate decision makers have been challenged regarding their proposed decisions".[257] The British Institute for Learning Disabilities referred to the role as providing "a safeguard and a greater voice for thousands of people in decisions that are fundamentally important".[258] Local authorities appeared to welcome the IMCA's role "in both reinforcing the appropriateness of decisions or in providing alternative suggestions and challenge to support the achievement of a least restrictive alternative".[259] BASW commented that "IMCAs have a good reputation and their reports on best interest decisions are respected".[260] At its best, the role of the IMCA was "a force for ensuring the dignity and rights of individuals who find themselves in contact with powerful and confusing systems".[261]

166. However, the wide variation in referral rates to IMCA services had "reduced the impact that could have been made".[262] We note the fifth report by the Department of Health on the IMCA Service,[263] published in February 2013, which highlighted wide disparities in instruction rates across different regions. The report concluded that "it is likely that in some areas the duties under the MCA are still not well embedded. The duty to refer people who are eligible to IMCAs is still not understood in all parts of the health and social care sector".[264] Evidence we received supported that conclusion, although the British Institute of Learning Disabilities pointed out that a "more serious and troubling variation"[265] was to be found between the social care and health care settings. The referrals for serious medical treatment were described as "worryingly low" leading to doubts about whether "medical professionals are actually complying with their legal duties".[266] The Derbyshire DoLS team agreed that "within hospitals, there is still greater variation in IMCA involvement", when compared to social care.[267] Brighton and Hove City Council suggested that this was due to different views of what constituted 'serious medical treatment', and that this "may result in IMCAs not being instructed as the legislation intends".[268]

167. Despite the positive comments on IMCAs in general, there were reports of "much inconsistency across the country".[269] Some of this was attributed to a continuing confusion about the role, with the College of Social Work stating that "sometimes the IMCAs themselves are not always completely clear about what the different potential roles defined in the MCA entails".[270] Professor Fennell and Dr Series argued that it was far from clear in the legislation when an IMCA should challenge decision-making. They were concerned in particular by the suggestion that IMCAs would challenge decisions only when they judged them not to be in P's best interests: "The right to obtain access to a court to air disputes under the MCA should not rest on the IMCA's judgment call as to best interests, but the person's own opposition to some measure which interferes with his ECHR rights and which is premised upon his 'incapacity'".[271] Irwin Mitchell LLP and others agreed that the primary focus of IMCAs should be "on promoting the individual's views and wishes, not acting as a pseudo-independent best interests assessor".[272] There was also a lack of clarity about whether or not an IMCA was able to act as a litigation friend, with some witnesses arguing that they should.[273] Recent case law suggested it was possible in principle,[274] but this did not appear to be widely known.

168. IMCAs were said to vary in their skills and knowledge and Sussex Partnership NHS Foundation Trust told us that this had an impact on how effectively they advocated on behalf of their clients.[275] Beverley Dawkins of Mencap called for greater investment in training of IMCAs whose clients had non-verbal communication, were in complex medical situations or who had challenging behaviour.[276] Headway suggested that the specific impact of acquired brain injury on capacity required an IMCA with an understanding of those issues in order to advocate effectively on the client's behalf.[277] The Standing Commission on Carers supported the call for IMCAs with expertise in specific areas.[278]

169. Regulations made under the Mental Capacity Act[279] give local authorities powers to determine the training and qualifications required of IMCAs. The Code of Practice stipulates that all IMCAs "must have [attended] IMCA training,"[280] but we note that the Code does not have the force of law.[281]According to the Social Care Institute for Excellence, IMCA training was originally a four day course.[282] Since 2009 national qualifications in independent advocacy have been available through a range of providers, with the support of the Department of Health. However, these are general advocacy qualifications, and the two units dealing specifically with the role of IMCAs are optional. Following the introduction of the advocacy qualification, it was expected that all IMCAs would complete the optional unit about the role of the IMCA, and where necessary also the unit concerning the role of an IMCA in relation to the Deprivation of Liberty Safeguards.[283]A quality performance mark for independent advocacy was launched in 2008, but it was suggested that it needed updating.[284]

170. POhWER, an IMCA provider, argued for a national qualification or performance mark for IMCAs, rather than relying on standards set by contractual agreements: "This is a vital professional role within the MCA and should be treated as such in terms of accountability, performance checks [and] continual professional development".[285] Several witnesses called for the professionalisation of the role using either a mandatory professional qualification for IMCAs, or a quality performance mark against which there could be closer performance monitoring.[286] Camden Adults Safeguarding Partnership Board wanted "national standards set for the IMCA role which are transparent and allow a pathway of recourse to address any issues arising".[287] They also argued for the IMCA role to be regulated by a central body, and that the absence of such regulation had resulted in regional variation in quality.[288] Browne Jacobson LLP wanted to see a review of IMCA training, which they felt "has often been focussed on the MCA rather than the IMCA role specifically, and for which there is little quality assurance or accountability".[289]

171. We also heard concern about the ability of IMCAs effectively to challenge decision-making by local authorities when those same authorities commissioned and paid for their services. The British Institute of Learning Disabilities said there was evidence that willingness to challenge was "not robust enough in some areas".[290] We were told that in some instances IMCAs who had challenged social workers had had official complaints made against them along with an instruction "to back off".[291] Several witnesses argued that such conflicts of interest were inherent in the structure of commissioning of IMCA services,[292] though not everyone agreed. Mr Neary's experience of the IMCA appointed to represent his son Steven was that she was "completely independent", and felt under no compulsion to agree with the local authority's view.[293] Ms Oi Mei Li, Director of the National Family Carer Network, cited research by The Foundation for People with Learning Disabilities which found that when IMCAs were used there were more challenges "because they understand the processes and know what should be happening and when things are not being followed through".[294]

172. Representatives from ADASS reported positive working relationships with IMCA service providers in their areas, and did not perceive a conflict of interests for IMCAs when challenging local authorities: "you would expect healthy challenge and healthy feedback on the way that you are operating … It is part of the quality control of your department and your directorate."[295] Parallels were drawn with independent chairs for Safeguarding Boards. "You would not want somebody to say it is all okay … there are always issues that need resolving".[296]

173. Many witnesses called for the role of IMCAs to be extended, allowing them to be made available in a wider range of circumstances. BASW agreed that local authorities should have greater discretion about when to make a referral, and that it would be especially helpful in cases of dispute concerning a best interests decision.[297] ADASS agreed.[298] Others argued for an automatic referral where there was an application under the Deprivation of Liberty Safeguards, regardless of whether the person was befriended or not, and automatic referral where there were allegations of abuse or neglect.[299] Other suggestions included an extension of remit to include all persons receiving a care assessment or plan under the Care Bill, or any important decisions, whether controversial or not.[300]

174. The 3 Counties IMCA Service questioned whether the IMCA system was "flawed as a safeguard" because it depended on referral by the decision-makers.[301] Mr Neary argued that anyone subject to a Deprivation of Liberty authorisation or their family should be able to approach an IMCA service directly, rather than relying on the local authority for a referral. In his son's case the referral was delayed by over six months. The judge found that if an IMCA had been appointed sooner "Steven would have been home within weeks".[302]

175. The role of the IMCAs has been widely praised and much of the evidence calls for their role to be extended. We believe that extending the range of circumstances in which IMCAs are appointed, and involving them earlier in the decision-making process, would be beneficial.

176. We recommend that local authorities use their discretionary powers to appoint IMCAs more widely than is currently the case. To support this, we recommend the Government issue guidance to local authorities and health service commissioners about the benefits of wider and earlier use of IMCA services. We believe the costs of greater IMCA involvement should be balanced against the resources required in lengthy disputes or ultimately in litigation.

177. Given the importance of the role of IMCAs in the lives of vulnerable adults we believe that the role requires further professionalisation to ensure consistency of service. This should be achieved through national standards and mandatory training in the Mental Capacity Act and the role of the IMCA within that. We recommend that responsibility for such standards and training be undertaken by the independent oversight body which we recommend in chapter 4, enabling peer support and consistency between IMCA services.

178. We recommend that the Government consider the establishment of a form of self-referral for IMCA services to prevent the damaging delay that occurred in the case of Mr Steven Neary.

Lasting Powers of Attorney

179. Evidence on the use of Lasting Powers of Attorney (LPAs) suggested they were underused and not widely known. Age UK said awareness of LPAs among the general population was low, and that access to good quality information was not always readily available.[303] Not many people were aware of the two types of LPA, covering property and financial affairs on the one hand, and health and wellbeing on the other.[304] Health and Welfare LPAs made up the minority of registered applications (20%) and there were calls for awareness of this type of LPA in particular to be raised.[305] Age UK also identified a general reluctance to engage with the subject—people tended to put off worst-case planning.[306] This was borne out by the meeting of the Forget-Me-Nots, a peer support and advocacy group for people with dementia, which two members of the Committee attended. There was a desire to live for the day: "we don't want to discuss this all the time".[307] The same was true of other family members: "It's not just us who put it off, it becomes a taboo subject—family members don't want to talk about it either".[308]

180. Alzheimer's Society said families and carers acting as deputies or attorneys found the Act confusing and lacked support in dealing with it, reporting a correspondingly high level of calls to their helpline regarding LPAs (1,356 queries between April 2012 and March 2013).[309] They agreed with Age UK that take-up was low, in part due to low levels of awareness, but also in part because many people with dementia were not diagnosed or only diagnosed too late. As a result "fewer people with dementia have powers of attorney in place than could benefit from them".[310]

181. The Public Guardian, Mr Alan Eccles, said that he was "never satisfied with the numbers that are being taken up".[311] However, he referred to the growth rate as "phenomenal": 49,000 LPAs were registered in 2008/09; that figure had jumped to 228,744 in 2012/13, and Mr Eccles believed the office to be on target to process 300,000 registrations in the current year. Those figures had been reached without any demonstrable effort to raise awareness of LPAs and the potential benefits of registration. However, Office of the Public Guardian had recently commissioned opinion research to gauge awareness levels, and was determined to tackle the potential barriers to take-up.[312]

182. Witnesses expressed concern regarding the complexity of the forms and cost of registering an LPA. The paperwork was considered onerous and the assistance of a solicitor was often sought; this added to the burden of costs.[313] Mr Eccles told us that the Office of the Public Guardian was consulting on simplifying some of its forms, "to make the form shorter, and also to try to make some of the language in the forms more accessible to lay people who are making the applications for themselves".[314] Mr Eccles informed us that the cost of registration had been reduced from £130 to £110, from 1 October 2013.[315]

183. We were concerned to receive evidence that the powers granted by LPAs were often not recognised or understood. The Law Society reported that understanding of LPAs in the banking sector was generally very poor.[316] Age UK suggested that financial institutions tended to have the right procedures in place but that individual staff were not always aware of them. They called for training of all customer-facing staff to ensure good knowledge of the Act and the relevant procedures operated by their institutions.[317] Age UK had been involved in new guidance issued by the British Bankers Association (BBA) and the Building Societies Association (BSA) in April 2013 which they hoped would improve performance.[318] Alzheimer's Society also reported that they were working with banks and utility companies, among others, to raise awareness and improve systems.[319] The Office of the Public Guardian had also undertaken work with the BBA and the BSA "to make sure that they have awareness of lasting powers of attorney and deputyship orders, and what they should do".[320] Good experiences were rare but made a big impact; one member of the Forget-Me-Nots, the dementia support group whom two Committee members met, told us "We have a great relationship with the bank and they help us a lot, we always see the same person".[321] Difficulties in accessing banking services are likely to increase for people who may lack capacity due to the growing complexity of financial transactions, such as the requirement for passwords and pin codes, which are necessary to prevent fraud and money laundering.

184. Access to information about LPAs that had been registered was seen as unsatisfactory. The Social Care Institute for Excellence (SCIE) said health and social care providers did not routinely ask whether an LPA had been made, or what it contained.[322] The Sheffield Safeguarding Adults Board said that LPAs were not necessarily recorded in hospital medical records, leaving staff in the dark about whom they needed to consult.[323] The London MCA/DoLS network said that staff rarely felt confident to conduct appropriate checks on family members who claimed to be attorneys or deputies; they were unlikely to contact the Office of the Public Guardian for clarification as the process was time-consuming.[324] This problem was considered particularly acute in emergency situations.[325] Even in cases where the existence of an LPA was known about, evidence suggested that there was little knowledge in health settings of the powers exercised under a health and welfare LPA.[326] We understand that the consultation by the Office of the Public Guardian entitled 'Digital by default', which closed in November 2013, included proposals for making its register available for searching; we are not yet aware of the outcome of the consultation.

185. Professor Jenny Kitzinger, who acted as a Court-appointed Welfare Deputy for her sister who was in a vegetative state, reported that "clinicians simply ignored the court order"; and on one occasion "new medical treatment was initiated without the necessary consent".[327] She found little support from the Court when alerting them to the non-compliance, and without sanctions, she felt she had no way of making the clinicians take the order seriously. She suggested that the Court should provide some form of back-up to health and welfare Deputies and Attorneys who allege non-compliance, such as a letter from the Court reminding organisations of their obligations under the Act.[328] The group of solicitors and barristers who jointly submitted evidence also reported incidents of statutory bodies not respecting the decisions of a Welfare Attorney.[329]

186. Low awareness of the requirements under the Act also appeared to be affecting the performance of attorneys and lay deputies. West Midlands Regional DoLS Leads Group reported that people were "rarely aware of the requirements of the Act" and needed support and guidance from social workers, resulting in increased workloads for social service departments.[330] Professors Celia Kitzinger and Jenny Kitzinger reported misunderstandings about the scope of an LPA—for example, the holder of a finance LPA wrongly assuming they had decision-making power over matters of health and welfare as well.[331] Lancashire County Council found that LPA holders did not understand the need to follow the best interests checklist.[332] Senior Judge Denzil Lush told us that in his experience of financial abuse cases, attorneys and deputies showed a distinct lack of knowledge of the Code of Practice: "most attorneys and deputies are unaware that it exists … almost none of them are interested".[333] Achieving better levels of awareness was considered crucial in ensuring compliance.[334]

187. There were concerns about the potential for abuse of property and financial affairs LPAs or deputyships. Senior Judge Denzil Lush told us he was "dismayed" at the extent of financial abuse that was emerging, particularly by close family members.[335] The Association of Public Authority Deputies said that concerns had been raised "locally, regionally and nationally" about the capacity of the Office of the Public Guardian to respond to safeguarding alerts when financial abuse was suspected.[336]

188. Under section 58(1)(h) of the Act the Public Guardian has power to deal with complaints against deputies and attorneys. Lord McNally referred to this as "a rather passive power".[337] He added that the Government were considering whether the Public Guardian "could have the powers to be more proactive".[338] Mr Eccles told us that the main way in which his office was alerted to concerns regarding deputies and attorneys was through "some form of whistle-blowing". His office had a whistle-blowing telephone line; and they also accepted referrals through the call centre, by letters or e-mail. Reports of concerns came from "all sorts of people" including family members, neighbours, social workers and banks. However, the main form of supervision was of deputies rather than attorneys, and that was through monitoring of annual reports. Any discrepancies or delays were followed up and investigated. He hoped that the new back office management system and digital tools would make this supervisory function "as robust as possible".[339] There were currently 48,000 deputies and 880,000 LPAs registered; in the last financial year the Office of the Public Guardian investigated 718 cases. Mr Eccles suggested that those figures were reason to believe that "the vast majority of LPAs are working well, and that deputyship orders are working as the court intended them to work".[340]

189. Solicitors for the Elderly thought it was likely that in making it easier to create an LPA, more incidents of financial abuse would follow. They cautioned against delivering ease and accessibility "at the expense of care and protection".[341] We raised these concerns with Mr Eccles in light of the consultation about fully digitising the LPA application process. We were told that maintaining appropriate safeguards in the process was a key part of the consultation: "our commitment is that it will be as secure, if not more secure, by doing it online".[342]

190. A small number of anomalies concerning the implementation of Lasting Powers of Attorney were drawn to our attention. One concerns the possibility of nominating successive attorneys. Mr and Mrs Boff described the attempt by Mrs Boff to appoint her husband as donee and to nominate their two children and a niece to act as successive replacement attorneys in an individual capacity.[343] The reason for not nominating her children and niece to act jointly and severally, permissible under the Act, was Mrs Boff's personal experience of acting as attorney for her own mother. Being appointed to act jointly and severally with her siblings had contributed to significant difficulty in managing her mother's affairs and had convinced Mrs Boff to make different arrangements for her own LPA. The Court of Protection ruled that under section 10(8)(b) of the Act "a replacement attorney can only replace an original attorney and cannot replace a replacement attorney".[344] We were also told by a group of solicitors and barristers that it was not clear whether the entirety of schedule 3 of the Act was in force, and they sought clarification in particular of "what formal requirements must be complied with in order for a 'foreign' power of attorney to be effective in England and Wales".[345] This was particularly important in light of uncertainty over the status of Scottish powers of attorney in England.[346]

191. As with other aspects of the Mental Capacity Act, low levels of awareness have affected implementation of the provisions relating to Lasting Powers of Attorney. Awareness needs to be raised among the general public of the benefits of Lasting Powers of Attorney in order to encourage greater take-up, especially for Health and Welfare matters. We support the initiatives of the Public Guardian to improve take-up by simplifying the forms and reducing the cost of registration, as well as identifying other barriers to take-up.

192. We recommend that the Government, working with the independent oversight body recommended in chapter 4, and the Office of the Public Guardian:

· address the poor levels of understanding of LPAs among professional groups, especially in the health and social care sector, paying specific attention to the status of Lasting Powers of Attorney in decision-making;

· consider how best to ensure that information concerning registered Lasting Powers of Attorney can be shared between public bodies, and where appropriate with private sector bodies such as banks and utilities;

· issue guidance to local authorities that their new responsibilities for provision of information in relation to care contained in the Care Bill should include information on Lasting Powers of Attorney;

· consider how attorneys and deputies faced with non-compliance by public bodies or private companies can be supported in the absence of specific sanctions;

· review the apparent anomalies in the current arrangements with regard to successive replacement attorneys, and the status in England of Scottish Powers of Attorney.

Advance decisions to refuse treatment (ADRTs)

193. Officials told us that no data were collected concerning the making of advance decisions to refuse treatment,[347] but in written evidence the Government assured us that it believed that "many more people know that they can refuse treatment and make choices about their end of life".[348] Nonetheless, evidence suggested that public awareness of advance decisions is low. Compassion in Dying cited research showing that only 3% of the public have made an advance decision, even though 82% have "clear views about their end-of-life care preferences".[349] It was also suggested by a number of witnesses that the introduction of welfare LPAs had led to a corresponding decrease in advance decisions,[350] since having an attorney provided the prospect of advocacy and meaningful engagement with local authorities and other public bodies on behalf of the person concerned.[351]

194. Browne Jacobson LLP described the effective use of advance decisions as a "comparative rarity"; more support was needed to ensure that they were valid and applied.[352] The North East London NHS Trust explained that it had a policy on advance decisions, including a standard format for drawing them up and guidance to staff on how to assist patients. Despite this, use of advance decisions was low, even among patients with chronic conditions. When advance decisions had been made, the standard was "poor and would be challenged if it was ever to be put into use".[353]

195. Concern was expressed about the levels of awareness among professionals of the role and status of advance decisions. Steven Richards, of Edge Consultancy, told us that he feared "that many health staff don't understand the rules and procedures for Advance Decisions in terms of recognising them and their authority or enabling patients to make them".[354] Serjeants' Inn Chambers concurred, mentioning specifically that there was "no widely available and approved standard form for an Advance Decision with the result that on the rare occasions when doctors are presented with one, the text will be unfamiliar and they will be anxious about providing or withholding further treatment".[355] The Society of Trust and Estate Practitioners agreed that "knowledge of [advance decisions] and their effect amongst health care professionals is still very patchy".[356] The Royal College of Nursing conceded that there was concern that many nurses were not clear about advance decisions.[357]

196. Nevertheless, we received evidence from a number of hospital trusts who had made significant local efforts to raise awareness, encourage take-up and ensure respect for advance decisions.[358] In Barnsley a document for recording advance decisions had been designed following local consultation. Many such documents had since been completed and there was evidence from A&E departments and palliative care units that these were being "understood, respected and upheld".[359] In Warrington and Halton Hospitals NHS Foundation Trust a standard operating procedure had been introduced; all advance decisions were checked and verified in the governance department and once all criteria had been met "an Alert is placed via Meditech which then prints off on all current and future patient admission screens and documentation".[360]

197. How information about advance decisions is used is of course crucial. Despite a few examples of local good practice the evidence suggested that there was no "systematic process for the recording, storage and retrieval of this information at the time when the person who made the [advance decision] lost capacity".[361] Research by the Mental Health Team at the University of Nottingham found that almost half of those who had made advance decisions had not shared this information with others.[362] The team concluded they were "not confident that in emergency situations decision makers have an agreed pathway to determine the presence or lack of an Advance Decision".[363]

198. The Law Society said that in its experience medical staff respected advance decisions as long as they were found to be valid and applicable; the difficulty usually arose in determining whether an advance decision was valid and applicable in relation to the treatment decision being made.[364] They recommended greater engagement between patients and clinicians at the time of making the advance decision to avoid such difficulties.[365]

199. Advance decisions to refuse treatment are an essential means of allowing individuals to determine their care in the event that they lose capacity. As with other aspects of the Act, the general public cannot benefit from this opportunity if they are not made aware of it. Similarly, advance decisions that are not recorded and shared with relevant public bodies are likely to be ineffective. Poor understanding among health and care staff needs to be addressed in order to promote the benefits of advance decisions to patients, as well as to ensure that they are followed when valid and applicable.

200. We recommend that the Government, working with the independent oversight body:

· urgently address the low level of awareness among the general public of advance decisions to refuse treatment;

· promote better understanding among health care staff of advance decisions, in order to ensure that they are followed when valid and applicable;

· promote early engagement between health care staff and patients about advance decisions to ensure that such decisions can meet the test of being valid and applicable when the need arises;

· promote the inclusion of advance decisions in electronic medical records to meet the need for better recording, storage and communication of such decisions.

257 Bracknell Forest Council. Back

258 British Institute of Learning Disabilities. Back

259 Brighton and Hove City Council. Also: Bracknell Forest Council; MCA and MCA DoLs' Team of Cambridgeshire County Council; West Sussex County Council. Back

260 British Association of Social Workers. Back

261 British Institute of Learning Disabilities. Back

262 Ibid. Back

263 Bonnerjea, L. The Fifth Year of the Independent Mental Capacity Advocacy (IMCA) Service - 2011 /2012, Department of Health, February 2013, page 6: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/158009/Independent-Mental-Capacity-Service-_-fifth-annual-report.pdf. Back

264 Ibid. Back

265 British Institute of Learning Disabilities. Back

266 Ibid. Back

267 Derbyshire DOLS team. Back

268 Brighton and Hove City Council. Back