Personalisation: Direct Payments and Mental Illness
Dr Christopher Alan Griffiths, BSc (Hons), PhD
Emily Ainsworth BA (Hons)
Research Department. Rethink Mental Illness, 89 Albert Embankment, London, SE1 7TP
Citation:Griffiths CA & Ainsworth E (2013) Personalisation: Direct Payments and Mental Illness.
International Journal of
Psychosocial Rehabilitation. Vol 18(1) 69-78
Since 2007 local authorities in the UK have been charged with
implementing direct payments for people receiving social care. Direct
payments allow people to make purchases to meet their needs. This study
investigated the experiences of seeking to obtain and use direct
payments of people who experience mental illness and their carers.
A qualitative methodology using telephone semi-structured interviews to
collect the data from 12 people with experience of mental illness and 9
carers was employed.
Interviewees were motivated to seek direct payments to meet their needs
not being met through current services. Knowledgeable and supportive
carers and healthcare professionals were vital in helping many people
who experience mental illness to achieve, manage and maintain direct
payments. The process for direct payments can be complex, time
consuming and stressful, requiring a high level of cognitive skills and
assertiveness. Benefits of direct payments include: ability to improve
social lives, reduce hospital admissions, raise standards of living,
increase levels of empowerment, improve mental and physical health, and
improve prospects for obtaining employment.
In general interviewees felt that the benefits of direct payments
outweighed the difficulties. There is a need to simplify and improve
the processes involved in obtaining and maintaining direct payments. If
the direct payments process becomes further refined, established and
uncertainness removed, it may result in a higher take-up of direct
payments for people who experience mental illness.
Key words: direct payments, personalisation, mental illness, carers, empowerment
payments are monetary sums paid to individuals who have been assessed
as eligible for a particular level of social care. These are intended
to provide the individual with more choice and control in deciding how
their care is arranged. In addition to facilitating care and support
Taylor (2008, p. 44) stated that direct payments have enabled people:
“to participate in many diverse activities from shopping trips to
education and training courses and leisure activities, providing new
interpersonal, vocational and lifestyle opportunities.”
payments were introduced in relation to social care services for adults
in England through the 1996 Community Care (Direct Payments) Act and
are now governed by the 2012 Health and Social Care Act and the 1989
Children Act. From April 2003 it became a duty for councils to offer
direct payments to people willing and able to manage or manage with
assistance. On 9th November 2009 the 2001 act was extended to include
people who lack capacity, as defined by the 2005 Mental Capacity Act,
and to remove the exclusions which apply to people who are subject to
various provisions of mental health legislation, particularly the
Mental Health Act 1983, and to provisions of criminal justice
legislation relating to mental disorder.
Direct payments take-up
rates are lower for those who experience mental illness than they are
for any other eligible group (Personal Social Services Research Unit,
2007). Despite such action as the Department of Health’s (NIMHE, 2006)
‘Direct payments for people with mental health problems: A guide to
action’ which sets out good practice in relation to making direct
payments more accessible to people with mental health problems and the
Department of Health funded ‘Direct Payments Take Up Campaign’ (Rethink
Mental Illness, 2011), there is still a low take-up of direct payments
by people who experience mental illness compared to other eligible
groups. “Studies have shown that inadequate leadership, a lack of
awareness about and promotion of direct payments, and staff concerns
about people’s ability to manage payments have hindered greater
take-up” (Office of the Deputy Prime Minister 2004, p. 43).
report funded by the National Institute for Mental Health in England
suggested further reasons for low take up, including emphasis in the
1996 Community Care (Direct Payments) Act on the needs of people with
physical disabilities, the tendency for people who experience mental
illness to have contact with the NHS rather than with social services,
tough eligibility criteria, and difficulties that people may have
managing money when they are ill (Spandler & Vick 2004, cited in
Personal Social Services Research Unit, 2007, p. 17). Taylor (2008)
reviewed why the take-up of direct payments has been particularly slow
compared to other service user groups and concluded that the confusion
surrounding eligibility, impact of fluctuating needs, and reluctance of
practitioners and care co-ordinators to offer this service provision
were determining factors.
Having access to direct payments can bring
many benefits. Direct payments can lead to a reported growth in
self-worth (Johnstone, 2000) and can enable people to participate in
activities and pursuits of their own choosing, for example attending a
gym, which can promote social inclusion and participation by
facilitating access to the kinds of opportunities of a normal life that
people without the restrictions of mental illness may take for granted
(Witcher, et al. 2000; Carmichael & Brown, 2002). Direct payments
can enable the purchase of more flexible help, facilitate better
continuity of care, allow greater control and an enhanced quality of
life and well-being, compared with conventionally determined services
(Glendinning, Halliwell, Jacobs, Rummery, & Tyrer (2000).
value of empowerment, independence and the exercise of choice and
control by people using services is a recurrent theme in care provision
policy (Ridley & Jones, 2003). Using direct payments an individual
can have the opportunity to decide what needs they have and seek to
find effective solutions to meet those needs. It is intended to be an
outcomes focused, proactive and empowering exercise, and encourage the
individual to be responsible in managing their care; this kind of
process can, in itself, result in mental health benefits (Taylor,
2008). The concept behind direct payments links with many of the
principles of recovery, as described in Slade (2009), such as
self-managing mental illness and developing a positive identity. Direct
payments are intended to encompass a person centred and empowering
concept (Spandler & Vick, 2006) but the reality of the experience
of those seeking and using the payments has been fraught with
difficulties (Taylor, 2008).
One use of direct payments by
receiptants has been to employ a personal assistant. (PA). It is argued
in the independent living movement that employing a PA is a very
empowering way in which direct payments can be used (Spandler &
Vick, 2006). Spandler (2004) and Glendinning et al. (2000) reported
that employing PAs through direct payments offers many benefits for
recipients but that it can also produce some difficulties.
present study interviewed both people who experience mental illness and
their carers on their experience of accessing and using direct
payments. The study sought to investigate what are the self-reported
barriers, facilitators, problems and successes, and to discover what
recommendations could be made to those involved in seeking, using,
assessing, supporting, supplying and reassessing direct payments. There
was a particular focus on investigating the experience of seeking to
employ and employing a personal assistant (PA) through direct payments.
This study employed a qualitative methodology using telephone semi-structured interviews.
inclusion criterion for the study was to have experience of trying to
access direct payments, either successfully or unsuccessfully. The
participants were recruited through advertising the opportunity to take
part through third sector organisations such as the charity Rethink
Mental Illness. A total of nine carers (three male and six female) and
twelve people who experienced mental illness (four male and eight
female) were interviewed. Seven participants stated that they had not
been able to access direct payments. At the time of the interview, one
participant was still waiting to hear whether or not he would be
successful. Seventeen participants ascribed their ethnicity as white
British (eight carers), one as East European, one as Greek Cypriot, one
as Bangladeshi (carer) and one as Indian.
separate questionnaires, one for people with experience of mental
illness and one for their carers were designed by the research team,
which included a person with lived experience of mental illness. The
questionnaire for people with experience of mental illness asked about
availability and ease of access to direct payment related information.
A care co-ordinator or key worker is often one of the most important
care professionals in the life of a person who experiences mental
illness and so they were questioned about awareness of their care
coordinator’s knowledge of and support in seeking direct payments. The
people who experience mental illness were questioned about being
offered direct payments information or if they had to take the
initiative to request it. They were asked to share personal reflections
on direct payments, as to whether they felt that the process was
helpful, and whether they were satisfied with the choices on offer.
participants with experience of mental illness were questioned about
their experiences of the process of buying services. Information was
gathered on what the interviewees spent money on, whether on PA
services, or alternative modes of care, and how their choices impacted
on their sense of wellbeing. 13. The participants were asked: ‘What
impact has using the DP had on you?’ The interviewees’ opinions were
sought as to how the direct payments system could be improved, whether
they had required additional support, whether they would recommend
direct payments to someone else, and what advice they would give to
that person. Those who had been refused a direct payment were asked
about the appeal process, and about the ways in which they were
supported if they decided to proceed. The interviewees were also asked
about other options for care needs that they were presented with
following refusal, and whether refusal had put them off applying again
for direct payments in the future.
The carers were asked a similar
set of questions to the individuals with experience of mental illness
in relation to their involvement and role in the direct payment
Participant information sheet
and consent forms were posted out to participants prior to interview.
Telephone interviews were conducted by a single researcher, ensuring
consistency. Informed consent was obtained orally and digitally
recorded. The interviews were digitally recorded. A semi-structured
interview approach was employed, allowing key themes to be explored but
providing an opportunity to examine issues raised by interviewees. This
approach encouraged dialogue, enabling more comprehensive responses to
be collected. All participants were offered a £10 voucher as a ‘thank
you’ for their participation.
analysis through the guidelines of Braun & Clarke (2006) was
undertaken to identify key themes and deviant cases. Thematic analysis
was employed here to identify and provide a detailed account of themes
related to direct payments. This was undertaken through a number of
phases: 1. data was coded into meaningful segments; 2. codes were
sorted into potential themes; 3. a process of refining, separating and
collapsing themes was undertaken; 4. the essence of what each theme is
about was identified and the themes were named and quotes identified to
support themes. Two coders worked separately and came together to
agreed final themes.
There are no
known conflicts of interest. Both authors certify responsibility for
the article as specified and required in the journal’s author
Results and Discussion
The following results and discussion is divided into five sections which group together major themes in the data.
Motivators in applying for direct payments
key motivator for individuals with experience of mental illness and
their carers to apply for direct payments was the belief that direct
payments offered the opportunity of more effective care provision and a
more individually tailored model of care that could meet their needs to
a greater extent. One of the reasons reported by both carers and
service users for their involvement in the direct payments process was
to widen social network and interests, factors which are seen as key in
recovery, social inclusion and well-being. In addition, knowledge of
rights to direct payments was reported as being a strong motivating
Another driving factor was dissatisfaction with existing
care and services. Some interviewees described how they sought to meet
their needs through the local authority and NHS but found that specific
therapies (e.g. reflexology or counselling) or services (e.g. respite)
that they felt that they required were not available; they then applied
for direct payments in order to access these therapies and services.
Factors in direct payments application and success in application
interview analysis revealed a range of factors in influencing whether a
person with experience of mental illness applied for direct payments,
as well as the chances of their application being successful. It was
clear that having a supportive and proactive carer often played a vital
role in the decision to seek to access direct payments, and in the
potential success in doing so. It was often the carer who helped to
identify how useful a direct payment could be. Also of vital importance
in whether a person with experience of mental illness, or their carer,
sought to access direct payments was a belief in the fundamental
principles behind direct payments: choice, freedom, empowerment,
control and better care, and the benefits that these factors could
Having a supportive and proactive carer was reported
as a key factor for many interview participants’ success on their
journey to acquire direct payments. There were however, some issues
experienced by carers who took on the role of providing help in seeking
direct payments for the person that they care for. One carer stated
that they were told that they were unable to conduct the process by
proxy, as confidential information was involved. Interview analysis
also drew attention to the additional administrative workload that
carers could face in providing support for the individuals they cared
for in using direct payments. Nonetheless, all the carers interviewed
stated that direct payments had made their lives easier.
of self-confidence, self-efficacy and assertiveness were key factors in
determining whether a person with experience of mental illness or their
carer decided to try and access direct payments, and their chance of
success. Many carers and people who experience mental illness are
disempowered and socially excluded which can lead to lower levels of
self-confidence and self-efficacy. This can stifle their motivation and
ability to apply for, successfully navigate the process, and succeed in
accessing direct payments, and this may contribute to low take up. This
emphasises the need for high levels of support (information, guidance
and encouragement) and having a system which is transparent, clear and
simple. It highlights that the present system favours those who are
empowered, socially included, and have high levels of self-confidence
and self-efficacy, which further increases inequalities. It seems
inequitable to have a system which can bring benefits in terms of
choice, empowerment, control and better care which discriminates
against those who are in greatest need.
Success in accessing
direct payments also depended on the ability to make a strong case for
direct payments; and this depends on, to some extent, having a high
level of cognitive skills, for example, how articulate and organised
they are. One interviewee stated: “the paperwork is very involved”
(C03). The system can discriminate against those without a high level
of cognitive ability. Although interviewees recommended that direct
payments were worth fighting for, many people who experience mental
illness may lack motivation and the cognitive skills to successfully
apply for direct payments. One interviewee sated that they: “really
went for it, because they [DPs] can make such a positive difference”
Many interviewees had a poor experience (for example, a
lack of information or support) of trying to access and use direct
payments. One carer assisting the person who they cared for stated that
they had to: “bend over backwards because I haven’t had enough support”
(C10). Such experience might deter future applications for the
payments, both from individuals who have accessed them in the past, and
others who have heard about the challenges of the system. A
direct payments process which is disempowering goes against the core
principles of the direct payments ethos.
revealed the importance of health and social care professionals in the
direct payments process. Key stories presented in the interviews
described how healthcare professionals who were informed, and who
provided information, support, guidance and encouragement in relation
to direct payments, made a significant difference in the prospect of
achieving direct payments. This highlights the value of training on all
aspects of direct payments for health and social care professionals.
need for this training was emphasised further as some interviewees
revealed that care coordinators acted inappropriately as gatekeepers
for direct payments. Rather than supporting the person to apply they
decided whether they thought the person should apply and if they did
not think that the person should apply they either did not provide
information, support and assistance, or in some extreme cases, they
actively blocked the application. Ridley & Jones (2003) also found
evidence of prejudicial attitudes of some staff, and that some staff
did not perceive people with experience of mental illness as able to
manage direct payments. This can be a major barrier to direct payments
if staff believe people are either: “not ill enough to have care needs,
but if they do have care needs are too ill to meet the criteria to
manage a direct payment” (Taylor, 2008, p.47). Other reasons identified
by Taylor (2008) as to why staff might not support direct payments
include a fear of change, a reluctance to share power, to take positive
risks, to surrender control, to stand back to enable people to take
their own decisions.
These issues could perhaps be addressed
partially through more support for care coordinators, as some
interviewees felt that there was a lack of support in relation to
direct payments for frontline health and social care staff from their
managers and the organisation that employed them. Dawson (2000) stated
that good practice should be that care coordinators start by assuming
capability rather than lack of capability.
revealed that if local authorities are flexible and innovative in what
they allow direct payments to be used for it can be beneficial to the
person who experiences mental illness and their carer. This aligns with
the findings of Spandler & Vick (2006, p. 107) who found: “When
given the opportunity, service users were able to use direct payments
creatively to meet a range of needs in ways which increased their
choice, control and independence.” The interview analysis presented an
example in which a person with experience of mental illness was given
real freedom of choice in deciding the best way to spend their direct
payments. The interviewee stated that they had been provided with:
“choice and control” (S08). This allowed the person with experience of
mental illness to take ownership and be creative in deciding how to
spend the money to best improve their health and wellbeing.
groups were also mentioned as being of great importance in the drive
for direct payments, for example, the carer community with the links,
support and advice that it can provide. Support groups can provide
emotional support and practical aid, and access to information. The
strength of interview participants’ social networks could be seen to
determine access to information and support.
Jones (2003) identified a key barrier to direct payments: a lack of
knowledge and understanding of direct payments. Not having information
about direct payments was found to be a fundamental obstacle to
progress. One notable initiative is the Department of Health funded
learning opportunity: 'Is it for me? A learning journey to direct
payments’; which has been designed by NIACE (2006) to empower people to
learn more and make informed decisions about direct payments. Hopefully
this training will be made widely available. In this study, awareness,
availability of, and ability to access information and advice emerged
as a key theme in determining how accessible participants found the
direct payments process. It was reported however, that local
authorities did not take responsibility for providing sufficient
information and advice.
Information and advice was accessed
via other sources, for example, the internet (on sites such as
direct.gov.uk) and from advisory services for example, those provided
by Rethink Mental Illness and the Centre for Independent Living. The
interviews highlighted that this kind of information and advice needs
to be followed up with access to face to face support (from the local
authority, healthcare professionals or the third sector) to facilitate
the application process and access to direct payments. As Taylor (2008,
p.46) stated: “Only through providing adequate support can local
authorities enable mental health service users to make informed
decisions…”. Spandler & Vick (2006) explained that having
assistance to be able to pursue self-defined goals and aims is crucial
The importance of personal assistants
key aspect of the interviews was the importance of personal assistants
(PAs) in the lives of people who experience mental illness and their
carers. Previous experience of PAs was described by some as poor.
Participants described a low quality service: PAs who were inadequately
trained, and uncertainty about which PA might turn up on any given day
(in one case, the participant described how this uncertainty caused
considerable stress). Direct payments allowed people to choose a PA who
matched their needs and who possibly had experience and training in
working with people with experience of mental illness. People who used
direct payments to employ a PA were able to take responsibility for
quality control, employing someone who they felt that they could get on
with, possibly of a similar age or with similar interests. This
confirms the findings of Glendinning et al. (2000). As Glendinning et
al. (2000) also found having a single PA who they had chosen enabled
more consistent support, and the development of mutually beneficial
ways of working. It also facilitated a stable relationship with the PA
to develop, and allowed the PA to respond to their client on a more
personal level, for example, to understand the effects of changes in
mood and how to respond to these. The positive relationships with Pas
and the benefits of this was also reported by Glendinning et al. (2000).
direct payments were used to employ PAs, carers described how they
experienced the benefits, citing reduced hours of care, less domestic
work and so on, although in some cases, they described how helping to
manage the direct payment led to an increase in their administrative
workload. The potential of a reduced care load was described as a
motivating factor for some. Others described how they thought that a PA
hired through direct payments offered the opportunity for the person
that they cared for to develop skills which would help improve
independence, and reduce dependence on them as a carer. One carer
interviewee stated: “it feel[s] like a huge burden has been taken away”
and another stated that they feel: ‘less responsibility’ and ‘less
drained’ (C03). This reduction in burden and responsibility could
enable carers to take a holiday, get a job or engage in more social and
leisure activities, all of which could be beneficial to their mental
and physical health and their relationships with family, friends and
the person that they provide care for.
Benefits of direct payments
payments allow the creation of a bespoke care and support plan, and the
funding resources to deliver this plan. Interviewees described a
variety of benefits brought about by direct payments such as their
ability to improve social lives, reduce hospital admissions, raise
standards of living, increase levels of empowerment, improve mental and
physical health, and improve prospects for obtaining employment. One
interviewee described having direct payments as: ‘the best thing since
sliced bread” (C07). Direct payments have the potential to enhance the
lives of carers, people who experience mental illness, and their
families. Another interviewee stated that direct payments: “...allows
you to step out of that usual service user circle” (S18). Ridley &
Jones (2003) reported that carers listed a range of benefits for
themselves and the person that they cared for. Carer interviewees in
this study described benefits that they derived through reduced care
related responsibilities and time spent caring.
& Jones (2003, p. 647) found that people: “were frustrated with
aspects of home support that did not meet their individual needs.” One
of the key advantages of direct payments reported by interviewees in
this study was that they can be a solution when the existing social and
healthcare systems and provision are failing to meet their needs. A
solution to social and healthcare needs is much more likely to be
appropriate and effective when a person who experiences mental illness
is engaged in and leads this process. Applying a solution that is more
likely to be appropriate and effective can save money. There may
however, remain a focus on: “providing adequate services at a minimum
cost through offering packages of care which are easily available
rather than evaluating what a mental health service user actually
needs…” (Taylor, 2008, p. 50).
Issues of uncertainty
direct payments can bring benefits in terms of mental health for both
people who experience mental illness and their carers (if they have
one), they can also bring risks. The interviews revealed that the
process itself can be stressful, and that disappointment in a rejected
application can be harmful to mental health and leave people feeling
disempowered, excluded, and with a sense of injustice. One interviewee
stated that: “Direct payments are a fantastic concept, but the
administration is actually really bad” (S17).
There are also
new challenges associated with a successful bid for direct payments,
which may result in difficulties for people. These include the
increased responsibility of spending the money and, if a person is
choosing to do so, challenges relating to hiring, employing and
managing a PA. However, in general interviewees felt that the benefits
of this positive risk taking outweighed the difficulties.
major issue for some was the stress caused by the six month
reassessment of direct payments that had previously been authorised.
After the difficulties involved in securing direct payments, the
prospect of losing them at the six month review was challenging. The
outcomes focused nature of direct payments meant that when targets were
met, and an individual’s mental wellbeing had improved, a review could
determine that the direct payment was no longer necessary. Direct
payments that enabled recovery could be removed and the person who
experiences mental illness and their carer had little or no control
over this. This caused a sense of uncertainty and powerlessness, and a
fear of the reviewing process was reported by interviewees as having a
negative effect on their mental health and well-being. A carer
interviewee stated that direct payment stability was: ‘incredibly
important’ for long term recovery.
The rules for direct payments
were described as being subject to various changes which created
problems, as the goal posts of achieving direct payments were moved.
This made it difficult for health and social care staff to provide
valid and up to date information. It also caused confusion and
frustration for interviewees.
Another area of great
frustration for some was the appeals process. The appeals process was
one which was described as being fraught with problems and delays.
Interviewees reported a significant problem in that their appeals were
often not even processed, raising the need for this system to be
examined for its effectiveness. One interviewee stated that: “the admin
is lousy” (S18).
Some interviewees described a significant time
lag between recognition of the need for direct payment provision and
the process starting, citing the negative effects that this had in
terms of their mental health. In some cases interviewees reported that
direct payments did not automatically rise with increases in service
costs, leaving the person short of money to pay for the services that
they were accessing through direct payments.
in obtaining and maintaining direct payments were reported by the
interviewees, but many described how the benefits of the payments made
the struggle to access them worthwhile. It is hoped that if the direct
payments process becomes further refined and established, more people
(practitioners, care coordinators, people who experience mental illness
and their carers) will have greater knowledge of direct payments and
the systems involved. If this is the case, there would be more
effective support for people seeking to access the payment, and
therefore a higher take-up and less apprehension about losing direct
payments that have been provided.
This research has identified
that dissatisfaction with existing care and support services and a
belief that direct payments can more effectively meet needs are
motivating forces in seeking direct payments. The analysis revealed the
importance of supportive carers and healthcare professionals in
achieving direct payments. It also illuminated the need to address
inequalities in the direct payments system that discriminates against
those in greatest need.
The research highlighted various
benefits that could be derived from having direct payments (Glendinning
et al. 2000; Johnstone, 2000; Witcher, et al. 2000; Carmichael &
Brown, 2002) and, as previous research has identified (Spandler &
Vicks 2006; Taylor, 2008) these benefits can only be achieved if people
are made aware of their right to access direct payments, and are
provided with the necessary information and support. Of paramount
importance for care co-ordinators in providing support for direct
payments should be the goals and aspirations of the person who may
benefit from direct payments.
confirmed the advantages that having the power to choose and manage a
PA through direct payments could have for people who experience mental
illness (Glendinning et al. 2000). Having a PA through direct payments
was also revealed as being beneficial to the carer of the person who
employed the PA though reducing the hours of time spent on caring
duties, and increasing the carer’s independence, although many carers
commented on increased administrative demands associated with helping
the person they cared for to become an employer. Direct payments were
reported as having the potential to benefit the mental health of the
person receiving them, as well as that of their carer; nevertheless the
six month reassessment process was reported as being damaging to mental
There should continue to be actions taken to improve the
process of and take-up rates of direct payments for people who
experience mental illness to facilitate benefits identified. There are
a number of recommendations that emerge out of this study that build on
previous recommendations such those made by Ridley & Jones (2003).
The recommendations from this study are:
Where possible, assurances should be communicated to people with mental
illness around the security of direct payments funding.
Local authorities should engage with third sector organisations to work
with them in providing information, guidance and support on direct
3. Simplify the direct payments application process.
Provide training on direct payments for all frontline staff. This would
need to include training on direct payments requirements,
responsibilities, process and appeals system.
Ensure resources are dedicated to processing direct payments
applications to reduce delays reported in this study.
Local authorities should ensure that high levels of individualised
information, guidance, and support are provided to people with mental
illness and their carers when they are going through the process of
7. Provide ‘working with people with mental illness’ training for PAs.
8. Take measures to ensure that direct payments rise automatically with inflation or service costs.
Consult carers, people with mental illness, and the groups that
represent them to identify problems in the direct payments systems and
discuss possible solutions.
10. Enhance the efficiency of direct payments appeals process.
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