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
subjectpeople 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 subjectfamily 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 LPAfor 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.