In 2008, Essex County Council (ECC) commissioned ecdp and OPM to follow people over 3 years as they use cash payments for adult social care within Essex. This study provides a unique opportunity to fully understand the experiences of people living with a personal budget over this time - a perspective that is often overlooked. This is one 5 briefing papers that contain findings from the third and final round of research with service users, frontline practitioners and providers in Essex who are working to facilitate self-directed support across the county. You can read the full, final report, the 4 other associated briefing papers and 3 videos that provide the lived experience of users over the last 3 years on ecdp's website: www.ecdp.org.uk.

1. Briefing paper 3: Ways to
improve the impact of Personal
Budgets
Findings from the third round of a three-year
longitudinal study in Essex
July 2012
OPM
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2. Briefing paper 3: Ways to improve the impact of Personal Budgets
Introduction
OPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by Essex
County Council (ECC) in October 2008, at the time of introducing Personal Budgets for adult
social care, to conduct a three-year, longitudinal study into the system of Personal Budgets.
The study aimed to:
1. Capture the impact of self-managed Personal Budgets on the lives of people who
use them, including evidence of how and why impact is being achieved over time;
2. Assess the effectiveness of practices and processes being used by ECC and its
partners to support the delivery of Personal Budgets, including evidence of how the
market is evolving over the study period.
This is one of a series of briefing papers containing findings from the third round of research
with service users, frontline practitioners and providers in Essex. These brief papers have
been produced to share key findings with audiences involved in personalising social care,
including practitioners, managers, commissioners, service providers and policy makers.
Other papers in this series include:
• Briefing paper 1: Positive impacts of Personal Budgets on service users
• Briefing paper 2: Factors that enable Personal Budgets to have a positive impact
• Briefing paper 3: Ways to improve the impact of Personal Budgets
• Briefing paper 4: Family, friends and Personal Budgets
• Briefing paper 5: Impact of Personal Budgets on providers
For copies of any of the above or for a copy of the full report, which contains details of our
findings, please email Sanah Sheikh at OPM. (ssheikh@opm.co.uk)
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3. Briefing paper 3: Ways to improve the impact of Personal Budgets
Key points
• There are a number of practical ways in which the positive outcomes associated with
Personal Budgets can be improved, including greater clarity about Personal Budgets,
improving systems and processes associated with Personal Budgets, greater clarity
about the annual review process and supporting the local market.
• Service users feel there is a lack of clarity about the terms and conditions attached to
Personal Budgets. This uncertainty relates to the types of providers that can be employed
and the extent to which service users can exercise flexibility in how they spend their
Personal Budgets. This is exacerbated by conflicting messages from different social
workers. This suggests that there is a need for clear and updated guidelines to support
practitioners and service users both during the support planning process and beyond in
understanding what they can or can’t do.
• Many service users experience a great deal of stress and anxiety because of delays in a
revised budget being approved following a review or a change in circumstances. Some
also face an additional burden of care when Personal Budgets are not responsive to
changing care needs, and therefore not meeting health needs. This is often exacerbated
by difficulties in getting in touch with the council and not having one point of contact.
• This suggests that local authorities should carefully consider their communication
protocols with service users and also fully maximise the use of third parties undertaking
support planning and reviews as this will have a beneficial impact on practitioners in
enabling them to focus on other tasks.
• A number of service users were very unclear as to whether it was their responsibility or
the council’s to initiate reviews. They also tend to have different ideas about the purpose
of the review and many are nervous that the current economic climate means that they
may not continue to receive the money they need to cover care costs. Service users have
also had varying experiences of the review – some are positive and others are negative.
• These findings suggest that local authorities should be clear with service users about
when a review should be instigated and by whom. It should also be transparent about the
purpose of reviews and the possible outcomes that could arise from them. Additionally,
practitioners should also ensure that they have had a chance to fully engage with the
service users support plan prior to the review process.
• Some service users and their relatives have had difficulty finding high quality, specialist
provision and at times this had meant that they were forced to employ people that
provided substandard care. This suggests that there is a need for more easily accessible
information around the quality of the market available to service users. Local authorities
should consider innovative online platforms that provide user generated information on
provider quality.
Overview
In the current round of research, service users included in the sample had been receiving
Personal Budgets for just over two years. The experiences of these service users highlight a
number of practical suggestions about how the positive impacts of Personal Budgets can be
improved. These can be grouped into the following four areas:
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4. Briefing paper 3: Ways to improve the impact of Personal Budgets
1. Greater clarity about Personal Budgets
2. Improving systems and processes associated with Personal Budgets
3. Greater clarity about the annual review process
4. Supporting the local market
These practical suggestions are of particular use to commissioners, managers and
practitioners that are involved in the implementation of the personalisation of social care.
1. Greater clarity about Personal Budgets
In the second round of research service users made the point that the lack of clarity in the
terms and conditions attached to the Personal Budget could make receiving a budget a
particularly stressful and uncertain time for the service users. Related to this, in the third
round of research, a number of those responsible for managing the budget expressed
uncertainty and a lack of clarity about how Personal Budgets could be used.
For some service users and relatives, uncertainty related to not knowing about the types of
providers that could be employed to provide services. For example, whilst some service
users are employing relatives as PAs or carers, others are not because they are not sure if
they are allowed to do so. This was an uncertainty for parents of service users with learning
disabilities (LD) and was particularly frustrating when there were issues for finding a suitable
and consistent PA or where service users had complex or challenging needs.
Other service users were unsure about the range of services that they are able to purchase
with their Personal Budgets. More specifically, they were unclear about whether they were
able to exercise flexibility in how they spent their Personal Budgets from what was specified
in their original support plan. Some reported having received conflicting information from
different social workers about this.
"More guidelines and more flexibility of what you can spend it on, for instance okay, we
want respite, we know that but it would be nice if it could be spent on some activities with
parents" (Mother of service user with LD)
"I would just like to have more information about what I could, or could not spend the
money on. That is the only thing." (Husband of older service user)
Other service users expressed uncertainty about any surplus which may have built up in their
Personal Budget accounts due to care needs and costs varying over different months. Some
service users felt they were not allowed to build up a surplus and others had received
conflicting messages about how a surplus could be used. As these examples indicate,
conflicting messages delivered by different social workers is exacerbating some service
users’ confusion as to what they can spend their Personal Budgets on.
It therefore appears that although service users have now been receiving Personal Budgets
for approximately two years, many feel that they continue to be unclear about the processes
associated with Personal Budgets. This suggests that there is a need for clear and updated
guidelines – which focus on user outcomes, rather than narrow or prescriptive inputs and
outputs – to support practitioners and service users both during the support planning process
and beyond in understanding what they can or can’t do.
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5. Briefing paper 3: Ways to improve the impact of Personal Budgets
2. Improving systems and processes associated with Personal Budgets
In this round of the research, many service users reported experiencing a great deal of stress
and anxiety which was often associated with delays in a revised budget being approved
following a review or a change in circumstances. This is often exacerbated by having one
point of contact, or receiving conflicting messages from different members of staff.
For some service users the delays associated with systems and processes have been limited
to the set-up phase, after which the Personal Budget operates smoothly. This is particularly
the case for service users who do not experience changing care needs. These service users
tend to think that the stress and anxiety is worth it in the long run and advise people ‘just to
stick it out. It does get easier.’ On the other hand, there are a number of service users who
continue to experience stress and anxiety associated with delays after the set-up phase, for
example in trying to schedule reviews.
A number of service users and their families are also often left with an additional burden of
care, when Personal Budgets are not responsive to changing care needs, and therefore not
meeting health needs. Again, this was often because a service user is waiting for a review or
cannot get in touch with the council to organise their review.
For some service users stress and anxiety was associated with the extra financial burden
that arises when the budget stops unexpectedly (for example, if the service user is
admitted to hospital for a short period of time), when there are delays in receiving the
Personal Budgets, either initially when the budget is set up or following a change of
circumstances or a review, or when the budget received does not match what the service
user expected through their review. These issues arose across the service user groups
interviewed. Those managing the Personal Budgets can be left in a situation where they
cannot purchase services they need or may have to cover the cost of care themselves.
This is particularly stressful depending on the level of resources available to the service
user or relative.
These findings indicate that there is a need for local authorities to carefully consider their
communication protocols with service users so as to try and reduce the amount of time
service users spend trying to get in touch with frontline staff. Additionally, local authorities
may wish to review the amount of additional support they currently receive from the VCS
and the wider market, to add capacity to their current resource of “front-line” staff. They
should also fully maximise the use of third parties undertaking support planning and
reviews as this will have a beneficial impact on practitioners in enabling them to focus on
other tasks and will also increase the sources of information available for a user. This in
turn will reduce the frustration of service users seeking to make contact with those people
supporting them to navigate the social care process.
3. Greater clarity about the annual review process
During the third round of research, almost two thirds of service users have had a review of
their Personal Budgets. Some of the service users who had not had a review felt they
needed one because of needs changing or because of wanting the Personal Budget to be
recalculated following a change in circumstances, for example leaving college or school.
Many of the service users who have had a review had initiated this themselves by contacting
the council.
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6. Briefing paper 3: Ways to improve the impact of Personal Budgets
A number of service users were very unclear as to whether it was their responsibility or the
council’s to initiate reviews and some felt they should not have to do so (even though they
had).
Service users tended to have different ideas about the purpose of the review. Some felt that
the focus of the review was to check up on how they were spending the money, for others it
was to make sure they were okay and see whether the care was still meeting their needs and
for others it was a mixture of these.
Some service user’s perceptions of the review seem to have been influenced by the current
economic climate. Many felt nervous about whether they would continue to receive the
money they needed to cover care costs, as they felt there was a lack of money in the system
overall.
In addition, there seems to be a lack of understanding about how Personal Budgets are
calculated, which is exacerbated by different social workers delivering contrasting messages,
which heightens the fear and nervousness about the review process before it happens. One
service user said:
"Well, because of the situation economically in the country, I was concerned before the
review that the Personal Budget would be cut, because the increase that we personally
had, was quite dramatic."(Wife of PSI service user)
Service users had varying experiences of the review when they had them. Some service
users really appreciated their review, as it made them feel more comfortable about spending
their Personal Budgets and provides reassurance that they are “doing it right”. Others
particularly appreciated their review when a social worker who had previously done their
assessment or review was involved:
"They knew exactly the situation with Daniel and they knew what he was like and they
knew how difficult and stressful it could be, so this actual review went better than the first
one, in as much as she understood where we were coming from really" (Mother of LD
service user)
Conversely, for some service users a negative experience of the review was due to not
having a consistent person assigned to the case, and a sense that the social worker did
not understand their needs which increased the scope for misunderstandings. Other
negative experiences of the review were because service users felt their social worker
was interrogating and reprimanding them for not spending payments correctly; because
of being given conflicting information from what they have been told previously or
because they find the process confusing.
These findings suggest that local authorities should be clear with service users about
when a review should be instigated and by whom. It should also be transparent about the
purpose of reviews and the possible outcomes that could arise from them. Additionally,
practitioners should be encouraged to view the review process not only as a check-up but
also a chance to improve outcomes for service users. Practitioners should also ensure
that they have had a chance to fully engage with the service users support plan prior to
the review process. There may be scope for local authorities to develop “practice share”
sessions on how to conduct effective and efficient Personal Budgets reviews.
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7. Briefing paper 3: Ways to improve the impact of Personal Budgets
4. Supporting the local market
As in round two of the research, some service users and their relatives had difficulty finding
high quality, specialist provision which could be a source of frustration and anxiety for service
users and their families. Examples of gaps included: specialist provision for young adults with
autism who had left school or college; age appropriate services for PSI service users who
were pushed towards services meant for older people and appropriate respite services for
LD service users. In these cases, whilst Personal Budgets were seen positively, the impact
of them was limited because service users and their relatives did not feel they could find
providers who were able to deliver the appropriate support or care. They found the process
of experimenting with different provision to be very stressful.
"There’s no kind of adequate services, you know, he needs to be in a specialist autism
place where they can understand his needs" (Mother of service user with LD)
Some reported that a lack of availability of adequate providers meant that they felt they had
no alternative but to employ people that provided substandard care.
The mother of one service user with learning disabilities had been through several PAs for
her son. She felt that the PAs were often students or had their own care responsibilities for
children or relatives which made them unreliable. She also felt that an issue with employing a
PA was in trying to purchase small hours of care, when the budget did not cover travel costs
for the PA which meant that it was not worth the PA’s while to pay for travel for one hour’s
work. In some cases, frustration with finding suitable provision was exacerbated by a
perceived lack of available support and guidance.
These findings suggest that there is appetite for local authorities to play a greater role in
supporting new entrants to the market, for example in rural areas where service users are
currently limited by the lack of providers and in under-developed markets such as support for
LD service users. There is also a need for more easily accessible information around the
quality of the market available to service users. At present, service users rely on “word of
mouth” or “trail and error.” Local authorities should consider innovative online platforms that
provide user generated information on provider quality. There also remains a demonstrable
need for support services – such as advocacy organisations – to support individuals to
navigate the social care economy.
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