Briefing paper 2:

Understanding demand
Findings from the second round of a three-year
longitudinal study in Essex

ecdp

May 2011

OPM
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London WC1X 8XG

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 Briefing paper 2: Understanding demand

Introduction
In 2008 Essex County Council (ECC) commissioned OPM and ecdp to do a longitudinal
study of people receiving cash payments for adult social care within Essex. The study
provides a unique opportunity to fully understand the experiences of people living with a
personal budget over a three-year period, and also to engage with stakeholders from the
council and the wider service market who are working to facilitate self-directed support within
the local area.
The study has two main objectives:
1. To capture the impact of self-managed cash payments on the lives of people who use
them, including evidence of how and why impact is being achieved over time
2. To assess the effectiveness of practices and processes being used by ECC and its
partners to support the delivery of cash payments, 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 second annual 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 cash payments, for service users and their families
 Briefing paper 3: Developing the service provider market
 Briefing paper 4: Attitudes to risk in spending personal budgets
 Briefing paper 5: ‘In our own words’ – the impact of cash payments on service users and
their families
For copies of any of the above or for a copy of the full report, which contains details of our
findings, please email Sarah Holloway at OPM. (sholloway@opm.co.uk)

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Key points
 A wide range of services are being purchased by service users with their cash payments.
Overall there is strong continuing demand among those on cash payments for traditional
social care, but this is now matched by the demand among service users for leisure and
personal development.
 Indeed, the level of demand for leisure and developmental opportunities has increased,
which suggests that service users increasingly understand cash payments as a route to
achieve broader well-being, rather to meet basic needs.
 Few service users include health services within their spend, broadly because health
needs are being met by statutory NHS services.
 There is very little evidence of service users purchasing information and brokerage
support at present, despite the fact that many would appreciate such support.
 Service users often purchase additional, self-financed services. In many cases, a cash
payment enables an individual to access a service that provides them with the
independence or the control needed to go on to purchase a number of other services.
 There are some notable differences in the types of services purchased by different
groups of service users. For example, older people tend to purchase traditional social
care services, whereas service users with a learning disability tend less towards
traditional social care. People with a physical or sensory impairment access the broadest
range of types of support with their cash payments.
 Service users and their family members are contracting services from a wide range of
different types of providers within Essex, including freelance individuals, some of whom
will be friends/family members, private agencies and other commercial organisations
 There is limited evidence of service users contracting with voluntary and community
sector (VCS) organisations to provide care and support. But those that do contract with
the VCS note a very high quality of service.
 When able to select an individual of their own choice to provide and deliver services,
service users consider the following to be important:
– compatible personality types and interests
– experience and expertise
– consistency and flexibility.

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Overview
This briefing paper provides detail on how services users within Essex are currently spending
their cash payments, and highlights any discrepancy between the types of services that
people would like to be using and the types of services that are available. It also sets out the
key features of a good quality service from the point of view of service users, as well as any
differences that can be identified by different impairment groups.
It aims to answer the following questions:
 As a provider: What types of services are most in demand? How do service users define
a quality service? And how can I shape my offer accordingly?
 As a commissioner: What types of services are most in demand? How do service users
define a quality service? And how can I support market development to meet the profile
of demand?

What services are currently being purchased?

Services being purchased by individuals within our study have been grouped into four broad
categories:
1. Social care
2. Leisure and personal development
3. Health services
4. Information, brokerage and access.1
Overall there is strong continuing demand among those on cash payments for traditional
social care, but this is now matched by the demand among service users for leisure and
personal development. Indeed, the level of demand for leisure and developmental
opportunities has increased compared with one year ago. This suggests that service users
increasingly understand cash payments as a route to achieve broader well-being, rather to
meet basic needs.
Few service users include health services within their spend (broadly because health needs
are being met by statutory NHS services). Similarly, there is very little evidence of service
users purchasing information and brokerage support at present.
It is important to remember when reading this paper that service users will often be
purchasing additional, self-financed services that are not included here. In many cases the
cash payment enables an individual to access a service that provides them with the
independence or the control needed to go on to purchase many other services.

1
This categorisation is useful for our analysis, but it should be recognised that in many cases social
care is designed to provide leisure and personal development too.

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1. Social care
e.g. home help, day-care, PA support and respite services
The majority of services users in our study spend the bulk of their cash payments on social
care. These services support service users with daily tasks, ensure that basic needs in terms
of personal hygiene and nutrition are being met, and allow family members respite from their
duties.
Specifically in terms of respite, some choose to pay for extended periods of residential care
to give their family carers the opportunity to take a break or a holiday, while others pay for
extended periods of PA or carer support within their own homes. Interestingly, respite was
most frequently mentioned in relation to older service users and service users with learning
disabilities, but not in relation to service users with physical or sensory impairments. And in
one instance, respite care, away from the home is being used as a way to prepare a young
person with learning disabilities for independent living. This is an interesting example of
where social care can be understood to have a developmental purpose.

2. Leisure and personal development

e.g. PAs, trips to the theatre, access to ‘pay’ TV services, and a sign language course
This is the category of support in which there is the broadest range of services and activities
being purchased. Service users direct cash payments towards a range of services that will
support their wider well-being, depending on their personal interests and needs. It is
interesting to note that since the first round of the study, some of the older service users
within our sample have added leisure activities to their package of support Two older
individuals who manage cash payments on behalf of themselves and their partners have
decided to diversify their spending to include leisure trips and activities to support broader
well-being. None the less, for older service users, their spend on personal development
represents only a small proportion of their overall cash payment.

3. Health services
e.g. physiotherapy and stroke rehabilitation
Few service users within our study purchase health related services via their adult social
care cash payments, as health needs are generally being met by the NHS statutory services.
But there are two notable exceptions, which serve to underline the importance of the
principles of personalisation being applied across the system.
Two service users, both stroke survivors at a relatively young age, are contracting services to
support health outcomes with their cash payments. Both service users noted that council
managed stroke services offered a far more limited and less well tailored option for them,
and hence the value of being able to independently purchase services via a cash payment.
This raises the concern that in some in some cases cash payments are being used to fund
replacements for statutory services which at present are not being sufficiently personalised to
the individual service user.

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4. Information, brokerage and access

e.g. transport, internet connection
Individuals within the study purchase services that provide access to opportunities and
services. Within our study several older service users and LD service users pay for travel
services via their cash payments. Other examples of ‘access purchases’ include computer
software to assist a service user who cannot read screen text, an internet subscription and
care line technology.
But none of the services users are currently spending cash payments on information and
brokerage to support them to manage their cash payments. Some individuals would like
more support dealing with providers, and have felt overburdened and under-supported since
starting to receive cash payments. For example, if a provider decides to increase the price of
their service, an individual may feel they have no bargaining power to negotiate as just one
individual. Others noted that they would like support to ‘make the most’ of their cash
payments and would welcome outside expertise on more innovative arrangements and care
solutions. Therefore there is a suggestion that if the provider market within Essex develops to
offer stronger information and brokerage services, this would be welcomed by service users.
But at present there is also still an assumption that information and brokerage should be
forthcoming from the council via their front line staff.
There are some notable differences in the types of services purchased within the three
categories of service users.

Older service users  Older service users tend to purchase traditional social care
services
 But they are increasingly accessing services to support broader
health and well-being
 None of the older service users within our sample access
additional health services
 None of the older service users within our sample access
information or brokerage services

PSI service users  PSI service users access the broadest range of types of support
with their cash payments
 They are the only service users to spend cash payments on
directly health related services

LD service users  Service users with LD tend less towards traditional social care
 This group tends to prioritise services to support broader health
and well-being, particularly PA support

What are the areas of unmet need?

Interviewees mentioned only a few services that they would like to purchase but could not
find available in their local are. Namely, there appears to be unmet demand for:
 Handyman services for ‘odd jobs’ in the home
 Specialist health care services including chiropody and lymphomatic massage.

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There also appears to be some unmet need for specialist PA services for young people with
autism (although these were available, there was a suggestion that they were not of a
sufficiently high quality).

What types of providers are service users purchasing from?

Service users and their family members are contracting services from a wide range of
providers within Essex. Primarily, service users are working with freelancer (some of whom
will be friends/family members), private agencies, voluntary sector organisations and other
commercial organisations.
The matrix below shows some of the distinctions in the types of providers being
contracted by different groups of service users.

Older service users  All older service users contract at least part of their budget to a
private agency
 In some cases the remainder is spent with other commercial
organisations that provide leisure activities and opportunities
 None are contracting services from friends or family members

PSI service users  Tend to purchase services from freelance individuals, and
particularly from friends and family
 In some cases, cash payments used to pay friends/close family
members who were already providing care prior to cash
payments
 Emphasis on the importance of personal care being provided by
a known and trusted individual
 Leisure opportunities purchased from mainstream providers,
e.g. football/golf clubs

LD service users  This service user group contract a broad range of providers, but
the majority choose to work with private agencies
 Some contract with a known individual who had already worked
with the service user in a different capacity, to provide care and
support for leisure and developmental opportunities
 In one case, where the market has failed to deliver, it’s been
decided to pass the responsibility to a close family member

The differences in services contracted by people of different age and impairment groups
underline the importance of the support of social networks in securing positive outcomes for
recipients of cash payment. It appears that PSI and LD service users can, more easily than
older service users, rely on known individuals to provide highly flexible and personalised care
and support.
But this does not necessarily mean weaker outcomes for older service users, as agency and
professional staff can also deliver highly tailored and flexible care where the market is well
enough developed. It does, however, mean that older service users may need additional
support to source care and support, as they are less likely to already have a well-placed,
known individual in mind.

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It is interesting to note that there is currently only limited evidence of service users
contracting with VCS organisations to provide care and support. At present this is
relatively more common among LD and PSI service users, with none of the older service
users reporting spend with the voluntary sector.
However, those service users that do work with VCS organisations note a very high quality of
service, as in the quotation below referring to a day centre and health service provider run by
a charitable organisation:
‘They’re very good because they are very concerned about my ability to read…. Also they
had a new programme that they were trying with me last week.’ (PSI service user)
Overall, across all service user groups, few individuals are willing to directly employ staff
and take on responsibility for elements such as tax and holiday allowances. As a result,
those individuals who do not wish to work with agency staff, either pass the responsibility for
administration on to an appointed service provider, or simply pay friends and family members
directly, and not via the PAYE system.

What types of individuals do service users want to receive services from?

Service users within our study emphasised the importance of having control over exactly who
would be delivering a service, either to them or to a family member.
‘I've been able to have the carers that I want for my son and that I'm happy with, because
when I've spoken to people before that are in the system, that are on the old style then
there’s carers that have been sent that they weren't happy with and they didn’t like at all.’
(Mother of LD service user)
The freedom to choose the type of person delivering a service, and often a personal service
is not only important in terms of giving a sense of control, but also in supporting a greater
sense of self. Service users are more likely to develop a positive personal relationship with
an individual who they have selected, according to their own criteria. The following criteria
are said to be important.

Compatible personality types and interests

Services users who are purchasing PA support, and are therefore likely to spend a
particularly long time in the company of that individual, are keen to be able to choose a
personality type that matches their own.
‘For me someone with mutual interests is useful so you've got some level of conversation
or mutual interest, mutual tolerance. Personally I like to eat with my companion so
preferably a similar palate, although my palate is pretty broad.’ (PSI service user)
With my current carer, I don’t feel like I’m having to ask for help from somebody who
doesn’t really want to give it.’ (PSI service user)
Indeed, for many people interviewed, it is important that the individual providing the service is
of their own age and therefore likely to have a greater number of compatible interests. And
for one person, it is imperative that the carer is a known individual – someone who they could
trust with the more personal elements of care giving. For this individual, therefore, receiving a
cash payment enabled her, for the first time since she had fallen ill, to access care on a
regular basis from someone other than her husband.

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Experience and expertise

The importance of contracting individuals with specific experience and expertise was
emphasised most strongly by those managing budgets for LD service users. Parents of
young people with LD feel that it is important to recruit individuals who had specific
experience working with that particular group. This does not mean that they require carers
with specific qualifications, just that they are experienced, competent and confident in dealing
with the specific learning disability in question and better able to deal with difficult situations
that may present themselves.
The following quotation outlines a mother’s frustration with unsatisfactory carers put forward
by a ‘specialist’ agency to look after her son with Autism:
‘And if they’d had a bad day, which they often did, he would say well I've sat and talked to
him, ‘Excuse me’, you felt like saying, ‘he’s got Autism, and he doesn't understand!’ And
oh, it got really bad, and in the end we had to say to the agency, sorry, he's just not the
right person.’ (Mother of LD service user)

Consistency and flexibility

A key benefit of purchasing services via cash payments rather than receiving council
managed provision is said to be the ability to flex the timetable of provision to suit the service
user’s routine, the routine of their families and fluctuating need levels. It follows that service
users value carers and service providers who can offer both consistency, (sticking to agreed
care timetables) and flexibility (being able to offer additional or ad-hoc care if required).
For the wife of a PSI service user, quoted below, being able to purchase services from
independent providers means not having to deal with absenteeism and ‘no-shows’.
‘Because the differential is that the carer is self-employed. As opposed to being
employed, and still getting the money. Then it’s easy for them to ring up and say, ‘I’m
sick’ and just not turn up - but not any more.’ (Wife of PSI service user)
For others, the benefit of a cash payment was in being able to flex the timetable of their
provision from week to week depending on need levels. This type of flexible arrangement is
more common when the service user is accessing care from known individuals, for example:
‘I can just say to her [carer], OK, why don't you come round here an extra couple of hours
this week? I can see something’s getting to him and something’s bothering him. So just
come round here an extra day this week, you know?’ (PSI service user)

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