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Customer and Carer
Experience of Self-
Directed Support in
Merton
March 2012
A report for LINk Merton by Jennie Chapman
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
1
Contents
EXECUTIVE SUMMARY ............................................................................................................................ 2
KEY CONCLUSIONS AND RECOMMENDATIONS .................................................................................. 2
TERMINOLOGY ................................................................................................................................ 2
CHOICE ............................................................................................................................................ 3
COMMUNICATION .......................................................................................................................... 4
CARER AWARENESS ........................................................................................................................ 4
BACKGROUND ......................................................................................................................................... 5
SELF-DIRECTED SUPPORT .................................................................................................................... 5
SELF-DIRECTED SUPPORT IN MERTON ................................................................................................ 6
RESEARCH METHODOLOGY .................................................................................................................... 8
RESEARCH FINDINGS ............................................................................................................................... 9
RESULTS FROM LBM FEEDBACK FORMS ............................................................................................. 9
RESULTS FROM LBM CUSTOMER SURVEY ........................................................................................ 10
RESULTS FROM FOCUS GROUPS ....................................................................................................... 12
RESULTS FROM ONLINE AND PAPER QUESTIONNAIRE .................................................................... 15
CUSTOMER SURVEY ...................................................................................................................... 15
CARER SURVEY .............................................................................................................................. 16
SURVEY DATA ................................................................................................................................ 17
CUSTOMER FEEDBACK .................................................................................................................. 18
CARER FEEDBACK .......................................................................................................................... 19
CASE STUDIES ........................................................................................................................................ 22
CASE STUDY - SDS FOR SOMEONE WITH ADDICTION PROBLEMS ................................................... 22
CASE STUDY - A CARER OF AN ADULT WITH AUTISM ...................................................................... 23
CASE STUDY - AN OLDER PERSON WITH DEMENTIA........................................................................ 24
CASE STUDY - CHANGING CIRCUMSTANCES .................................................................................... 25
CASE STUDY - TRANSITION ............................................................................................................... 26
CASE STUDY - MAINTAINING INDEPENDENCE ................................................................................. 27
CASE STUDY - AN OLDER PERSON WITH HIGH SUPPORT NEEDS ..................................................... 28
APPENDIX 1 – SEVEN STEP PROCESS OF SELF-DIRECTED SUPPORT IN MERTON.................................. 29
Customer and Carer Experience of Self-Directed Support in Merton .................................................. 30
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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EXECUTIVE SUMMARY
This research has drawn together a number of different pieces of feedback from customers and
carers who have been through or are in the process of going through the Self-Directed Support
process (SDS) in Merton. It has sought to draw out common themes.
Of course each customer and carer has a unique and important story to tell and this research
includes a selection of case studies to attempt to give a flavour of the complexity and variety of
situations in which people find themselves.
In 2011 LBM undertook an internal review of the SDS process, looking at the workings within the
council. It is hoped that this report will add value and a customer perspective to that review.
This report analyses each of the different pieces of customer research and evaluation that have been
done and key themes and recommendations are included below.
KEY CONCLUSIONS AND RECOMMENDATIONS
It can be clearly seen from the data in this report that the experience of most customers has been
positive. This is particularly true for customers feeling more involved in determining their own
support, which of course sits at the heart of the whole ethos of SDS.
The SDS process intervenes in people’s lives in a very personal way, and often at the most vulnerable
times, and so it is unsurprising that people have strong and emotional responses at times to the
whole thing. The issues that present to Social Care staff are often only the tip of the iceberg in the
story of people’s lives. This report evidences cases where the social work skill of staff has been
instrumental in offering excellent support and other examples with an opportunity for development
in understanding of the wider issues that may underlie the obvious presenting problems.
Common themes for development emerge across the data collected and reviewed in four areas –
• Terminology
• Choice
• Communication
• Carer Awareness
TERMINOLOGY
One recurring theme throughout this research was a real lack of awareness among customers and
carers about the terminology of the SDS process. Terms such as “Self Directed Support”, “Personal
Budget”, “Self-Assessment Questionnaire” and “Support Plan” were seen by most at the focus
groups, in one-to-one conversation and people asking about the questionnaire to be irrelevant to
them. Many people also did not understand terms such as “social care” Although this may at first
appear to be unimportant it does mean that literature and information that is available may not be
read and information, even on the London Borough of Merton website, may not ever be found.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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There is therefore a need to ensure that as people go through the process they are given clear
information that explains the terminology.
CHOICE
There is still considerable scope for further market development of services in Merton, especially for
those with the most complex needs.
Work has been undertaken by “The Choice Initiative”, a project supported by the Foundation for
People with Learning Disabilities, that recognises that choice for consumers is routinely promoted as
a quality standard when care providers advertise their services. For politicians and policymakers
alike, it has become something of a buzzword. For people receiving care and support services there
is often a very real gap between the rhetoric and the experience.
In order to make a major decision a person should have:
• Access to appropriate and sufficient information in a format that is accessible to them
• The capacity to understand the information, the options and the consequences of the
various outcomes
• The opportunity to make their decision freely and without any duress or biased
encouragement
Creating meaningful choice for those people who need extra support to understand the information,
options and consequences will take considerable time, effort and skill and during any further
consideration of how to further develop the SDS process in Merton it will be important to factor in
the skilled working hours that will take.
Choice is only meaningful if at least two attractive options are given which both meet a person's
wish or aspiration. If one choice is vastly superior over another (or neither is appropriate) then it is
not actively choosing! In many cases during this research people did not feel that there were more
than 1 realistic choice available to them, although it should be noted that the vast majority of
customers and carers are satisfied with the services that they are receiving as a result of the SDS
process.
It would be worth considering ways to develop the market in Merton and ways to develop micro-
enterprises in the borough. “Supporting Micro-Market Development – A Detailed Practical Guide for
Local Authorities” (DoH, NAAPS, 2009) is available on the following weblink -
http://www.thinklocalactpersonal.org.uk/_library/Resources/Personalisation/Personalisation_advic
e/SSMSCSEFullreport.pdf. This sort of development offers interesting possibilities for collaboration
between the voluntary sector, social care, health services and the business sector and could result in
a wider suite of options for customers that are each designed to meet the needs of small numbers of
people.
Customers do need to be able to make an informed choice based on knowing all the options that are
available to them and so the development of a directory of services that indicates cost and suitability
would be advantageous at the earliest opportunity.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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COMMUNICATION
It should be noted that the majority of participants in this research were really pleased with the way
in which they had been treated and felt a high degree of trust in their Social Worker. However a
significant minority, often recognising the pressures that Social Workers are under, felt let down by
difficulty in being able to contact someone and a lack of consistency of calls being returned or
information being received when they had been told it would be.
The development of a simple agreement between the customer or carer and Social Services giving a
clear indication of the steps that will be taken, what is expected of the customer or carer at each
stage and what they can expect of Social Services in terms of resources, availability and service
standards would assist with addressing this issue and may have benefits for both parties.
Such an agreement would also be valuable so that customers and carers know how to deal with
changing needs after the Personal Budget is agreed and implemented. There was particular
confusion and a perceived lack of flexibility if circumstances altered or fluctuated once a package of
care had been agreed.
CARER AWARENESS
Generally carers have found the SDS process to be more stressful than customers and they are
generally less satisfied with the process.
Continuing professional development training to ensure that staff remain alert to these underlying
issues and are equipped to support carers would be advantageous.
It is also recommended that the process specifically allows time and space for carers to be able to
discuss openly and away from the customer their own needs as this could affect significantly the
services required for the customer. The SAQ could be developed slightly in this area to address
whether the carer is able (not just willing) to continue in their current caring role. However it should
be recognised many carers will not fill in the SAQ accurately, either because they do not want the
customer to see how they are feeling or because they feel that they have concern more for the
customer than for themselves.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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BACKGROUND
This research was commissioned by LINk Merton to follow up initial research with a small group of
customers and carers in Merton in September 2010. It is hoped that this research will also add value
to an internal review of the process conducted by the London Borough of Merton (LBM) in 2011, by
focussing on the experiences and suggestions of those who have been through the process as a
customer or carer.
SELF-DIRECTED SUPPORT
In January 2008, a circular went out to local authorities from the Department of Health This
set out information to support the transformation of social care, as outlined in the Health
White Paper, 'Our Health, Our Care, Our Say: A new direction for community services' in
2006. It describes the vision for development of a personalised approach to the delivery of
adult social care.
This major programme was introduced under the auspices of 'Putting People First’,
published by the DH in December 2007. This document outlined a shared vision of and
commitment to the transformation of adult social care along with the Local Government
Association, the Association of Directors of Adult Social Services, the NHS and others. Key
elements were:
• Prevention
• Early intervention and re-enablement
• Personalisation
• Information, advice and advocacy
Councils were required to move to a system of personal budgets for everyone who is eligible
for publicly-funded adult social care support. They were also required to provide universal
information, advice and advocacy services for all who need services and their carers. This is
irrespective of eligibility for public funding.
A big part of adult social care transformation has been the introduction of Self-Directed
Support (SDS.)
The Social Care Institute for Excellence “Personalisation: a rough guide (revised edition
2010) characterises SDS in the following way –
SDS is a term that relates to a variety of approaches to creating personalised social care. SDS
is seen as the route to achieving independent living. It says that the defining characteristics
of SDS are:
• the support is controlled by the individual
• the level of support is agreed in a fair, open and flexible way
• any additional help needed to plan, specify and find support should be provided by
people who are as close to the individual as possible
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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• the individual should control the financial resources for their support in a way they
choose
• all of the practices should be carried out in accordance with an agreed set of ethical
principles.
SELF-DIRECTED SUPPORT IN MERTON
In Merton the SDS process was first piloted in 2009 and has since expanded. The full 7 step process
is outlined in Appendix 1. However LBM has also introduced a SDS reviewing process whereby
existing customers may choose to be fast-tracked and rather than going through the whole process
can choose to remain using the package of care that they already receive if they are happy with it,
although they will be informed of the amount of their Personal Budget and offered an assessment if
they are not happy with their current services.
The following figures relate to information recorded in (LBM) data during the period of April
2011 and January 2012.
A total of 1402 people have received Self-Directed Support during the period. This includes
both clients and carers and excludes anyone in an adult placement or in a permanent
nursing placement.
Full Process & Fast Tracked
The number of people that went through the process of having a full SDS assessment is 449.
The remaining 953 people did not have an SDS assessment but were reviewed using the SDS
reviewing process described above.
Care Groups
These people can be broken down into the following care groups.
Care Group Number of people
Physical Disability 582
Older People 364
Mental Health 213
Learning Disabilities 212
Other Vulnerable People 31
Total 1402
Managed by
The number of people who are receiving a Direct Payment supplied via SDS is 191 and can
be categorised as self-managed. The remaining 1211 are receiving other services supplied
via SDS and can be categorised as being managed by the authority.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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SDS Reviews
A total of 185 people have had an SDS review during the period.
Previous Research
Link Merton research with a small group of customers and carers during the pilot period of
SDS in 2010 led to the following main conclusions -
1. Peer support was likely to be a vital issue in the expansion of SDS.
2. There is a need for greater awareness of the SDS programme. Participants did not
necessarily recognise themselves as being on the SDS pilot and were not aware of the
terminology.
3. There is an on-going need for accessible information, free of jargon. Access to
individualised and tailored support and information is essential, including in the self-
assessment process and the identification of appropriate services.
4. Cultural needs & diversity (individuality) are intrinsically linked to a person’s sense of
control/independence and need to be a critical element of personalisation.
5. Participants were keen to learn how to manage their own independent living options
(for example how to employ & manage your own PAs) and the market will need to grow
to accommodate this. It was not clear that a market of choices/services fully existed yet
that reflects new needs and aspirations of users.
6. The relationship with and awareness of the social worker had a significant impact on
promoting independence.
7. The 7 step process for SDS should not be seen as linear. There should be flexibility in
returning to or reviewing previous parts of the process or taking steps out of sequence,
to meet the needs of participants.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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RESEARCH METHODOLOGY
The views of a total of 77 customers and 21 carers (who represent a further 21 customers) have
been considered in this research.
This research was carried out through a combination of online and paper questionnaires, focus
groups and one-to one interviews with customers and carers. A wide range of methods was used to
ensure a good spread of views and opinions and to ensure that all who wanted to take part could do
so.
Survey respondents were drawn from a random sample on LBM’s database to which the researcher
had no access, from those customers and carers known to Merton Mencap and Carers Support
Merton, and from distribution on “Merton Connected” online to voluntary organisations around the
borough. The researcher also attended the Merton Transition Fair in March 2012 to talk to
customers and carers about their experiences.
The research also involved a desktop review of returned feedback forms to LBM from customers
who had been through the SAQ or support planning process. However it should be noted that these
particular forms related to a period during which support planning was moved in-house in LBM and
so some relate to an earlier arrangement. Common themes running through the various methods of
research were observed and are included in the key findings.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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RESEARCH FINDINGS
RESULTS FROM LBM FEEDBACK FORMS
40 LBM feedback forms were reviewed that were from customers who had been through the full
SAQ / Support Planning process between May 2011 and November 2011. As no demographic
information is requested on these forms it is not possible to identify particular groups of customers
in these results. All those responding had broadly positive things to say about the SDS process.
Absolutely none felt that the process had been negative, with most giving very positive comments
such as -
• It has been easier for me to gain confidence and get some independence back
• Support Planning has helped me to get back to work
• I was involved in the planning of the Support Plan and my views were taken into
consideration
• It is good as it makes you responsible for the money that is allocated and makes you aware
how much the Government has to spend on you for your disability.
Every respondent felt that their needs had been met by their support plan, at least to some extent,
although a few people felt that not every need could be met due to financial restraints.
Although around half felt that they had no concerns at all about the process, the main areas of
concern, in order of the frequency that they were mentioned are –
• The process took too long and was a bit confusing
• The forms were confusing/ too long/ difficult to complete
• Concern about how to implement the Support Plan in the light of a lack of predictability
regarding the customer’s health and needs
• Concern from a customer about the pressure on their parents of managing the budget for a
PA
• Difficulty in coordinating the services that you need on the days and times that they are
needed
• Not all needs can be addressed due to the amount of funding available.
• Lack of awareness of what services are available therefore not aware of what possible
choices exist
• Customers also mentioned a number of teething issues occurring with practical
arrangements for care outside the SDS process
Recommendations from customers filling in these feedback forms were also made. The most
common recommendation was about the need for more and clearer information about the process,
especially at the start, to explain what will happen, and about what will happen if plans need to be
altered due to changing needs. Other recommendations were also made on fewer occasions which
were -
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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• The SAQ needs to cover some more issues – e.g. awareness of time, ability to understand,
need for routines, management of possessions or obsessive behaviours.
• The wording of “physical disability” should be changed to “physical impairment” to reflect
an understanding of the social model
• The credit form for LBM for Direct Payments looks like an invoice and could be clearer by
identifying services rather than reference numbers
• A more succinct basic form for the SAQ would be helpful with additional space for further
information so that people can write only things that are relevant for them
RESULTS FROM LBM CUSTOMER SURVEY
Internal LBM SDS surveys that had been sent out to customers and carers in 2011 were reviewed.
These comprised 10 customer surveys. Two respondents answered the questions themselves, 4
answered them with help from someone else and 4 said that someone else mainly answered the
questions. Those taking part included people from the following groups -
Gender Male- 8, Female -2
Age 18-24-2, 25-34-1, 35-44-2,45-64-3, 65-74-0, Over 74-2
Ethnic Background White British = 5, Indian - 1, Black British – 3, Pakistani -1
Main Reason you Need
Support
Physical Disability – 5, Learning Disability - 4, Mental Health - 1
40% of respondents had been assessed or reviewed using the SDS process between 6 and 12 months
previously and 30% less than 3 months ago, with the remainder between 3 and 6 months ago.
Respondents were asked to rate how much they agreed with various statements – with ratings as
follows –
1 – Very much disagree, 2- Disagree, 3- Neither agree nor disagree, 4 – Agree, 5- Agree very much
Numbers giving each response are shown below -
1 2 3 4 5
Were your views and opinions considered when developing
your support plan?
7 2
Has the Council made it easy for you to….
Get the information, advice and support you need? 6 4
Help you to assess your needs? 6 4
Control how the money in your personal budget is spent? 1 8 1
Plan and manage your support 9 1
Get the support you want? 1 6 3
Make changes to your support arrangements? 1 7 2
Choose from a range of services to meet your needs and
preferences?
7 3
Make your views known or make a complaint? 1 7 1
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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Perhaps most importantly customers were asked how they felt their life had changed as a result of
being assessed /reviewed using SDS. Eight people filled these questions in and most people felt that
in most areas of their lives SDS had made no particular difference. However, nobody felt that any
area of their lives had been made worse by SDS and the following table shows those who felt that
SDS had helped in each area if their lives.
Area of Life Number who said that SDS had
helped (out of 8)
Physical well-being 3
Emotional well-being 2
Feeling safe when you are at home 2
Feeling safe when you go out 3
Social life 2
Choice and control over the support you use 6
Taking part in and contributing to community life 2
Being supported with dignity 4
Relationships with your family 1
Relationships with your friends 1
Relationships with people who are paid to support you 3
The control you have over things that are important in your life 4
Spending time with people you want to be with 3
Maintaining or regaining your independence 4
Half of all those responding said that they had made changes to the way they receive support since having
a personal budget.
There were a number of areas that respondents mentioned where they would have wanted to use their
personal budget for particular things but they couldn’t. These were for personal hygiene accessories,
more hours of support and a home help for cleaning and ironing.
Particular additional comments that were made were –
• I can do more of what I want to do, when and how I want to do it.
• This survey has been difficult for me to answer as it is not accessible for me as I have a learning
disability.
• I think I should be allowed to use my budget as I want. In my circumstance my primary carer who
is my mum is very ill with a long term condition. My allowed hours are not enough for me as my
mum is finding it very difficult to care for me as she used to. If I am allowed to use my budget as
it suits me my mum will be alright as she is struggling now.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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RESULTS FROM FOCUS GROUPS
Two focus groups were held in February 2012. Eleven carers and 15 customers took part in these groups.
Those taking part included customers with or carers for those with physical disabilities, learning
disabilities and mental ill health as well as those who were frail older people.
CARERS NEEDS AND INVOLVEMENT
When asked on a scale of 1-10 how valued they felt as carers throughout the SDS process (with 1 being
not at all and 10 being highly valued), scores ranged from 3 to 6 with the average score being 4.4.
Figure 1 - Carers' Rating of How Valued They Felt Throught the SDS Process
0
1
2
3
4
1 2 3 4 5 6 7 8 9 10
Nu
mb
er
of
Ca
rers
Rating - 0=Not at all - 10= Highly Valued
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
13
Carers were also asked to rate on a scale of 1-10 how much they felt their needs as a carer were
considered throughout the SDS process (with 1 being not at all and 10 being thoroughly considered).
Scores ranged from 2 to 6, with an average score of 3.5.
Figure 2 - Carers' Rating of How Much They Felt Their Needs Were Considered Throughout the SDS Process
Several carers commented that they knew that staff were very busy and some particularly
commented on the helpfulness of staff that they had encountered. However, the group did have
concerns that centred around the following areas –
• Communication - relating to calls not being returned and no communication when delays
occurred to explain what was happening.
• Attitude - Over 30% of carers felt that they were actually seen as a hindrance to the process
– one described being directly told that she was “interfering” and another said that her
relative(the customer)reported being told that the carer was “neurotic.”
• SAQ - Part 2 of the SAQ, which asks about the carers’ needs, caused considerable problems
for most of the carers. This was mainly because they did not feel able to fully express their
situation on paper, especially when this might be seen by the person for whom they care. In
particular carers said that they did not feel able to express how hard they often found their
caring role because this might upset the customer. There was also a concern about the
question that asks about whether the carer is willing to continue in their current caring role.
Several carers felt that a crude “yes” or “no” answer did not allow them to explain their
feelings. In particular they felt that this did not address their ability to be able to continue,
and their concerns for their on-going ability to care, particularly for those who have
deteriorating health or who are less able over time due to aging.
• Carer Role - There was an interesting contrast between those carers who cared for someone
who was unable to complete the form themselves and those who cared for someone who
had completed their own section of the SAQ. Where carers had filled in the form on the
customer’s behalf they felt that a heavy burden of responsibility was placed on them.
0
1
2
3
4
1 2 3 4 5 6 7 8 9 10
Nu
mb
er
of
Ca
rers
Rating - 0=Not at all - 10= Thoroughly Considered
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
14
Conversely where carers did not need to do this they felt that their opinion was at times
devalued or even unwanted.
THE SDS PROCESS
Participants were asked about the main thing that would have improved the SDS process for the
customer. Although some answers were more personal to a particular situation, there were
common themes – these were as follows –
• The process needed to be broken down into more manageable chunks for those
customers where concentration and intensity are a problem. Several participants said
that some sessions with Social Services had taken up to 3 hours and that this was too
much for the customer.
• The input of other services with whom the customer interacts would be invaluable – for
example their day centre, college, care worker, psychologist or respite provider would
have valuable insight into the sort of support a customer would need and that this
would be valuable in all cases but most especially when the customer may have difficulty
expressing this themselves. Carers felt that this would help to provide a more holistic
picture of the person’s needs.
• There was a feeling among participants that sections of the SAQ seemed to reflect more
of a medical than social model of disability – and that the form focussed on the negative
rather than the positive. For example, they mentioned that some answers said “I do not
require support with this” as the most positive possible answer, rather than “I am able
to….”
• Most participants felt that the overall process seemed to be too long and complicated
although conversely the assessment itself seemed to be too simplified to give a true and
rounded picture of the customer.
• Many customers felt that they would have valued a wider choice of options to meet
their needs.
Participants were then asked what would be their top priority to improve the SDS process. The top
answers were as follows – in order of priority –
• Communication -
o All carers said they would have valued clearer information at the beginning of the
process that explained exactly what would happen in simple language, what was
expected of them and of the customer and what they could expect from LBM.
o Most carers felt that they wanted clearer communication throughout the process
about timescales, outcomes of each stage and what would happen next and in
particular responses to messages. Over 40% of carers said that they had left
messages or asked questions and either never received a response or been told they
would get a response within a certain timescale which did not materialise and they
then had to chase it.
o There were reports of nobody seeing to be able to answer some questions, with
each person that they spoke to saying that this was somebody else’s area and
passing it on, only to be told that they were still speaking to the wrong person. Two
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
15
carers said that they had completely given up on having some questions answered
because they ran out of energy to keep trying to find the right person.
o Customers valued knowing who was dealing with their case and always dealing with
that same person.
• Timescales-
o Over 60% of those taking part felt that the length of time taken to go through the
process seemed too long. They felt this was mainly because the administration of
the process seemed to take a long time. On average participants felt that a month
from first enquiry to final decision would be long enough, with the range of answers
about what would be reasonable ranging from 2 to 8 weeks. Overall all felt that as
long as they understood exactly what was happening and when the next stage
would occur they would have felt less anxious about the length of time the process
took.
• Carer Awareness –
o Over 70% of the carers felt that their views and concerns had not been fully
understood or considered in the process.
o Over 40% of carers felt that the person they had dealt with did not appreciate the
strain they faced every day and the impact that it was having on their well-being.
• Flexibility-
o Three carers expressed concerns about the challenges associated with altering the
package of support when circumstances changed. This particularly applied when the
carers own health deteriorated or they needed to go into hospital. Two carers had
actually put off going into hospital for necessary operations because there was
nothing yet in place to support the person for whom they care. They felt that the
packages that were in place were not flexible enough to cope with a carer crisis.
• Market –
o The majority of customers and carers said that they were satisfied with the services
that they receive. However some felt that they wanted a wider range of choices
that suited their particular interests – some mentioned sporting or learning
opportunities that would have interested them to support social development.
RESULTS FROM ONLINE AND PAPER QUESTIONNAIRE
CUSTOMER SURVEY
Twelve customers took part in the survey during February 2012. The demographics of this group are
shown below -
Gender Male- 3, Female -9
Age 18-25-0, 26-35-2, 36-50-4, 51-60-2, Over 60-4
Ethnic Background White British = 7, Asian Bangladeshi – 1, Any Other Asian – 1,
Black African – 1, White Irish – 1, Prefer Not to Say - 1
Disability (some
respondents ticked
more than 1)
Physical Disability – 7, Learning Disability - 1, Mental Health – 1,
Long Standing Illness – 5, Other - 4
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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Half of the respondents were receiving a Personal Budget that was managed by Merton Council, 2
had their Personal Budget managed by a representative, 1 managed their budget themselves. One
had filled in an SAQ and was awaiting the next step and 2 respondents were unsure at what stage in
the process they were. Nine of the 12 participants had received support to fill in their SAQ – 5 from
their Social Worker, 2 from relatives and 2 from a voluntary sector organisation.
Seven of the 12 participants had been receiving services from the council before the introduction of
SDS and of these 3 said that their services were better since the introduction of SDS while the
remaining 4 said that they were no different.
Three participants said that they had received a review since their first experience of SDS and in one
case this had resulted in some changes for the better. All said that the review process itself had been
helpful.
CARER SURVEY
Ten carers took part in the survey during February 2012. The demographics of this group are shown
below -
Carer’s Gender Male- 2, Female -8
Carer’s Age 18-25-1, 26-35-0, 36-50-3, 51-60-5, Over 60-1
Carer’s Ethnic
Background
White British = 4, Asian Bangladeshi – 1, Asian Indian – 2, Asian
Pakistani – 1, Any Other White – 2,
Cared-for Customer’s
Gender
Male- 6, Female -4
Customer’s Age 18-25-2, 26-35-4, 36-50-2, 51-60-1, Over 60-1
Customer’s Ethnic
Background
White British = 3, Asian Bangladeshi – 1, Asian Indian – 2, Asian
Pakistani – 1, Mixed White and Black Caribbean – 1, Any Other
White – 1, Prefer Not to Say - 1
Disability of Customer
(some respondents
ticked more than 1)
Physical Disability – 2, Learning Disability - 7, Mental Health – 1,
Long Standing Illness – 3, Sensory Impairment - 1
80% of carers were caring for a customer who received a Personal Budget (half of these managed
the budget on behalf of the customer and others had their budget managed by Merton Council.)
One had filled in an SAQ and was awaiting the next step and 1 had been advised of an indicative
allocation and asked to fill in a Support Plan Template. 9 of the 10 carers had been involved in filling
in the paperwork for or with the person for whom they care, with 6 doing all the paperwork
themselves and 3 helping the customer to fill it in. A Social Worker had helped the carer to fill in the
SAQ on 2 occasions and the Support Plan on 4 occasions. Two carers received support from a
voluntary organisation to fill in the SAQ.
Six of the 10 carers said that the customer for whom they care was receiving services from the
council before the introduction of SDS and of these 3 said that their services were better since the
introduction of SDS while the remaining 3 said that they were no different.
Only 1 carer said that the customer had had a review since their first experience of SDS and in this
case this had resulted in some changes for the better.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
17
SURVEY DATA
Customer data is listed in red. Carer data is listed in green.
Strongly
Agree or
Agree
Neither
Agree
nor
Disagree
Disagree
or Strongly
Disagree
Not
Applicable
Customers Carers
Each step of the SDS process has made
sense and been clearly explained
9 / 5 2 2 / 3 1
The forms that I have filled in have been
clear and straightforward
7 / 5 2 / 1 4 3
The process helped me / the person I
support/ to feel I /they have choice and
control
10 / 4 1 / 5 1 1
The process took an acceptable length of
time
9 / 4 4 2 / 2 1
I have been clear about where I can go for
help with the process if I need it
10 / 5 1 2 / 4
I am satisfied with the SDS administrative
process
10 / 6 1 1 / 3 1
I have found it easy to contact people in the
council about the process
6 / 3 4 / 2 2 / 3 2
The process allowed me as a customer /
carer to fully express my needs
9 / 2 1 / 3 2 / 5
The Personal Budget has allowed me / the
person I care for / to choose services that
best suit me / them
9 / 6 1 / 4 2
I have / the person I support has greater
control because of the Personal Budget
9 / 2 1 / 5 2 / 3
I have / the person I support has greater
choice due to the Personal Budget
7 / 3 2 / 3 1 3 / 3
On-going administration of the Personal
Budget is straightforward
4 / 4 3 / 1 3 / 3 2 / 2
The amount of time spent administering the
Personal Budget is acceptable.
5 / 3 2 1 / 2 6 / 3
I have / the person I support has had a wide
choice of services to meet my / their needs
5 / 1 3 / 3 1 / 6 3
The services that I / the person I support
now receive(s) are appropriate for my /
their needs
9 / 8
2 / 1
1 / 1
The services I receive are good quality 10 / 9 1 2
I have found the process stressful 2 / 8 2 6 / 2 2
My willingness and ability to care for the
person I support was considered
3 2 5
My caring role has been valued and
recognised
5 2 3
I am able to have a life outside my caring
role
2 3 5
KEY -
At least half of those where this
question was relevant felt positively
about this statement
At least half of those where this
question was relevant felt negatively
about this aspect of their experience
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
18
CUSTOMER FEEDBACK
This data shows a generally very positive view of the SDS process, especially from customers. In fact
in all but one of the statements at least 50% of customers for whom the statement was relevant felt
positively. For 13 of the 17 statements at least 75% felt positively. Particularly of note is the high
level of choice and control felt by customers as a result of the SDS process, although this response
was no higher in those who had been receiving services before SDS was introduced when compared
with those who had not.
Customers were most undecided about the ease of contacting people in the council about services
where 33% could neither agree nor disagree that the process was easy.
Only 14% of all answers from customers where the question was relevant were actively negative.
These are, of course important and merit consideration, but this does reflect a low degree of
dissatisfaction. The least positive answer from customers related to the ease of on-going
administration of their Personal Budget. Discussions with customers revealed that they appreciated
the autonomy of being able to manage their own budget where possible or of having their
nominated representative to manage it but found the actual process somewhat time-consuming and
challenging, especially where there were quite a lot of transactions on their account. Those with
fewer transactions generally found this easier. One customer valued having a relative manage the
account but felt bad that this was a “burden” on them.
Representative customer comments on the survey included –
What Are the Best Things About Your SDS Experience?
“The social worker support person...was and is brilliant!”
“Individual choice about what care I received.”
“Having a managed account has made the experience very good as I was worried about all of the
paperwork. Also I have been able to choose my PAs and this has been very good for me.”
“Excellent service so well delivered - everyone has been understanding, helpful and kind. I have been
able to open up to social services staff in a way that has surprised me.”
“To be listened to and the help that I have received.”
What Are the Worst Things About Your SDS Experience?
“Not knowing where to go for help, not having any clear info about it (like a step by step guide).”
“Long wait for money to come through.”
“The paperwork during the application and for on-going administration.”
“Honestly absolutely nothing.”
“The process is not satisfactory and quite stressful.”
How Could the Process of Applying for SDS be Improved?
“I do not know as everything was done for me by the Social Worker.”
“More information on the process and more support when filling out the forms.”
“More information needed and better explanations of how the payment can be spent. “
“I don't feel I actually know a lot about it as my Social Worker has done it all for me but I am happy
with this.”
“It could not be better.”
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
19
Additional Comments
“I would like to say that without the charity that supported me I would not have been able to access
services mainly because of not speaking English.”
“I am now a much happier person and no longer worried for my future.”
CARER FEEDBACK
There are some notable differences in opinion between customers and carers, with carers generally
feeling less positive in some areas. Carers tend to have filled in the questionnaire when the customer
was unable to do so, and correspondingly the carer will have been more involved in the entire SDS
process because the customer has more complex needs or is less able to participate in the SDS
process without significant support.
Carers tended to find the process far more stressful than customers. Discussions with carers reveals
that this is due to a number of factors –
• Carers tend to be juggling their own lives and that of others in their family as well as dealing
with the SDS process on behalf of the person for whom they care.
• Many carers who spend large parts of their lives caring have little opportunity for a life
outside their caring role.
• Carers are most involved where the needs of the customer are more complex and this links
with the fact that, where needs are more complex, carers report that there is little choice of
available specialist service options and there may not be any options, of which they are
aware, that ideally suit the needs of the customer.
• Although customers generally felt that the process allowed them to express their needs, this
is not true of carers. In discussion most carers felt that their role was recognised but that
they did not feel they were able to fully express their willingness or ability to continue
caring at the same level. Most felt that caring was their duty and it was inappropriate to ask
for any support for themselves or admit to the level of stress they were under. Some also
expressed that they could not write how they felt on the SAQ because this would be seen by
the customer.
• Carers generally felt that they held a large amount of responsibility for the customer and
were very concerned to make sure that they gave the process their full and diligent
attention as an advocate for them.
Representative carer comments on the survey include -
What Are the Best Things About Your SDS Experience?
“That we are at the end of it! I would find it hard to have to go through again. Otherwise, the best
thing is that is, I think, we have ended up with a service that fits my cared for and me, both, rather
than them having to fit in to a pre-determined service.”
“The option to do a fast-track version of the process as happy with most aspects of existing services.
Creative thinking of day centre staff on alternative way of providing respite via Home from Home
scheme, plus direct payments to allow my son to stay away for a couple of weekends a year.”
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
20
“Very helpful and efficient social worker.”
“The training and information from a local charity provided us with a lot of information as to how to
access SDS in different ways to suit the user's needs. We feel SDS has given various choices that are
available.”
“People have been helpful and always willing to listen. I have had options given all the time. I have
been made to feel comfortable. The option of having a choice on who the care workers can be is
good.”
What Are the Worst Things About Your SDS Experience?
“Having questions unanswered. I asked the Team Manager various questions that were never
answered. SDS is supposed to be a single assessment process but it feels 'all over the place'
especially if you want varied/new things. Carers needs have been separated from the disabled
person in an assessment rather than seeing it as a dynamic. Too much of an assumption that carers
will take on the work. Soc Serv only respond if you say “I'm not doing that”. They are 'testing' what
we will do/put up with.”
“Nothing to report to date!”
“I found that the SDS form is lengthy - time consuming - repetition of questions and no information
and advice from my son's care Co-ordinator. To date after filing the form (4 months ago) we feel that
appropriate action should have been taken by now.”
“Getting answers to calls.”
“Moving from children's to adult services is a hard process as things are so different. It is challenging
to understand clearly what you need to know.”
“I get almost no respite and am constantly exhausted.”
How Could the Process of Applying for SDS be Improved?
“There is a great need for a comprehensive, up-to-date directory of available services/activities/agencies,
with priced options, covering both in-house, voluntary and private sectors. It's very hard to make choices
in the dark!!”
“Carers Support Merton having a more involved role. They are impartial/independent and very
supportive and knowledgeable. I would like just ONE PLACE to help with everything instead of
having to go all over the place. Good information would help: info on services but also info on the
technical issues (legalities etc). Better help with PA's, i.e, an organisation in Merton where I can buy
this rather than using an agency. I hate the idea of using an agency because it gives me
responsibilities I do not need at present.”
“The questionnaire form for SDS should be simple - shorter and easy to understand. The user
cannot concentrate on such lengthy form hence can get frustrated. The time to process the
application should be minimised in order that user's/carer's are not put in undue stress.”
“Giving people quicker responses.”
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
21
“With more people being available to go through it and/or provide emotional and moral support as
you go through it.”
“With better direction to people who can support you.”
“With more co-ordination of services so that you don't feel you're dealing with different parts of the
service that are not necessarily talking or communicating with each other.”
“With better information about where you are in the process and who will be contacting you next
(and so that you can point out if a part of the process seems to have been missed out.”
Additional Comments
“The current provision is the result of a request from me for a review, which resulted in a new SAQ
being completed and eventually to changes. I am concerned that had I not been around to request
the review and to have an input at that review, it would have been easy for my cared for to have
been left in the situation they were in as they find it hard to speak up for themselves if they feel it is
going to cause repercussions of any sort.”
“I think it's good in theory but has many practical problems. People have now become about money
rather than their needs. We have gone back to the medical model where everyone is seen to have
problems. The SDS form is really only about what they cannot do and/or what problems they have.
I found this extremely depressing and contrary to what legislation expects.”
“I appreciated the sensible decision to offer a shorter version of the questionnaire, but still evaluate
need and provide a budget on the basis of it. Even then I had a couple of queries which were quickly
answered by the social worker, and all documentation came back for me to check through online,
which was very helpful.”
“We felt pressurised and rushed. At times it did feel that there was pressure to get decisions about
where next and what next before they had had time to take a breath and feel safe and secure and
cared for again. We were constantly aware, throughout the whole process, of the financial
implications of every step of the way. Our social worker does, I feel, have the best interests of my
cared for at heart but is themselves under constant pressure with regard to finances and we were
acutely aware of that. I realise this is a part of the general financial difficulties that all local
authorities are in, but it is hard to feel that there is a human making decisions based on best interest
and needs at the end of the process, rather than what can be afforded.”
“I was given no help and guidance to fill the form. The Care-Coordinator did not fully involve me and
was not interested to take my views into consideration.”
“I never knew about the support available until a local charity told me a lot of information - I would
never have known otherwise.”
“My views do not seem to have been taken into account.”
“I have almost no life apart from caring and the current package of support is not enough.”
CASE STUDIES
CASE STUDY - SDS FOR SOMEONE WITH ADDICTION PROBLEMS
Mr F is a customer in his 40s who is supported by Drug and Alcohol services in Merton. He is a
recovering heroin addict who had attempted detox with no long term success twice previously. Two
years ago Mr F was one of the earlier SDS customers who discussed the Self-Assessment
Questionnaire with his case manager and agreed that he would be happy to fill it in on his own.
However he found it embarrassing to write on the form about how difficult things had become and
so understated the challenges that he was facing. When he returned the form to the Case Manager
she could see that the form did not fully reflect the reality and so she helped him to more accurately
state his situation to get support in his recovery
Sometime later Mr F was told he was to receive funding, although he does not recall ever being told
the amount of funding available. Mr F felt that he had good support from his Case Manager, who
helped him to explore a variety of day and residential rehabilitation options. He decided to go into
residential rehabilitation out of the area. The programme of support offered was for 24 weeks but
he was told there was only funding available initially for 12 weeks. However, during that 12 week
period the service provider and Care Manager helped to put a case together for further funding to
pay for the additional 12 weeks of the programme. The uncertainty of this was quite stressful for Mr
F, but he was grateful for the support of the service provider and Care Manager throughout.
After leaving the residential rehabilitation Mr F moved into Housing Association accommodation
that is supported by Merton Drug Intervention Programme. He started to volunteer and to
undertake training to improve his skills and employability. The Care Manager helped him to get
funding to undertake a Level 3 Diploma course although Mr F is unsure whether this was through
the SDS process or some other means. He also attended a weekly peer support group that was
arranged by his Care Manager.
Mr F has now been drug free for 2 years and is actively seeking employment. He found the SDS
process to be very good overall and this was enhanced by the support of a very caring and insightful
Care Manager. Mr F feels that a downfall of the process is that if there was not the help of such a
professional he would have known what he wanted but would not have had the support to establish
what he actually needed. Mr F also has some concern that some addicts could find it hard to manage
a budget or could use their budget for things that would later be sold for drugs (e.g. a laptop).
KEY MESSAGES
Stigma or embarrassment may mean that customers may significantly understate the difficulties that
they face on a SAQ.
Time taken by a supportive and understanding professional throughout the process can enhance the
outcome of the process for the customer.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
23
CASE STUDY - A CARER OF AN ADULT WITH AUTISM
Mrs H is a carer in her 60s who describes her ethnic background as Persian. She cares for her son (Mr
H) who is in his 30s and has autism. He lives independently with support. His behaviour can be
unpredictable and Mrs H says that he is unwilling or unable to acknowledge the help that he needs.
Mr H receives a personal budget that pays for another relative to act as his PA for 9 hours a week
and help him with some household tasks. Mrs H helps with many of Mr H’s other day to day needs,
including things like encouraging him to keep clean and helping him when problems occur around
the home. Mrs H was delighted when Mr H received a personal budget as it allowed him to employ
someone who knew and understood him so well and this was really important to both her and her
son.
Mrs H has since had some health problems of her own and needs to go into hospital. She feels that
Mr H needs more help than the 9 hours he currently receives and is concerned that she is less able
to provide as much support as she has been in the past. She explains that she approached the Local
authority and was given a SAQ for Mr H to complete. However he has refused to complete the form
and she says that she has spoken to the Local Authority on more than one occasion since and been
told that there is nothing more that can be done as the process involves Mr H needing to fill in the
SAQ form, which he continues to refuse to do.
Mrs H says that she feels exhausted with what she describes as continual fighting on her son’s behalf
and attributes the breakdown of her marriage to the stress.
KEY MESSAGES
The challenge of how best to support a carer when the person for whom they care refuses to fill in
forms despite capacity to do so remains now that SDS has been introduced in the same way as it did
before.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
24
CASE STUDY - AN OLDER PERSON WITH DEMENTIA
Mr J is a gentleman in his mid 70s who has Parkinsons Disease and associated Lewy Body dementia.
He now needs 24 hour personal care for all his physical needs and has very recently stopped
receiving a personal budget as he has moved into residential care. However about 3 years ago he
became one of the early customers of SDS in Merton.
Mr J’s wife saw literature sent by London Borough of Merton about the new SDS process and was
immediately attracted by the idea of being able to build a more personalised package of care and
having more control of the care that Mr J received. Although Mr J had been receiving a package of
care she felt that this had not always been appropriate for his needs, especially as care workers were
provided by an agency who did not offer a continuity of staff or hours. This was a particular problem
for Mr J as he needed a regular routine and familiar faces with whom he could build trust. At times,
believing care staff to be unwanted strangers in his home, he had asked them to leave.
Mrs J phoned LBM and said that she would like to pursue the SDS process on her husband’s behalf
and was sent a SAQ. Mr J was not able to complete this so Mrs J did so on his behalf. Mrs J is a
professional woman with a high level of business skills but she found the form to be confusing and
so sought advice and support from a voluntary sector organisation. She found this invaluable, and
they also went on to help her with the financial assessment forms.
Mrs J recalls time spent discussing the care support that Mr J required with a Social Worker and was
later told his Personal Budget. She wanted to manage her husband’s budget on his behalf and
describes this as being something that helped to reduce her stress because she has felt that she is
able to have control. She did not find the process of managing the budget to be a problem, and
describes the Direct Payment Team as being extremely friendly, approachable and knowledgeable.
She found monthly group meetings facilitated by the Direct Payment team to be invaluable as a
place to ask questions and learn from others’ experiences. She then interviewed and trialled 3
different care agencies, and settled on the one she felt could best meet her husband’s needs.
Due to the nature of Mr J’s illness, his condition continued to deteriorate and Mrs J tried to get more
support for him without success. She attributes this at least in part to the fact that she is aware that
she is a person who presents as very capable and appears to be coping very well. She says that this is
her character and she is unlikely to tell someone unprompted how she is feeling. However, by this
time she was not getting a night’s sleep at any time and was suffering health problems related to
stress. At no time can she recall anyone from LB Merton asking her about how she was coping, and
when she did eventually try and tell someone she feels that this was dismissed until she produced a
letter from her GP confirming the physical and emotional effect caused by the level of caring she was
undertaking. By this time Mrs J had reached the point at which she could see no alternative other
than residential care, and Mr J agreed to this, largely on the basis that he could see the effect that
the stress was having on his wife. Mr J has now moved into residential care.
KEY MESSAGES
Carers may appear to be coping far better than they actually are and may find it hard to admit
without prompting how they are feeling. Pro-active, timely, sensitive support for the carer and some
increase in care services can help to delay or prevent residential care admission.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
25
CASE STUDY - CHANGING CIRCUMSTANCES
Miss C is a White British woman in her 20s who has a learning disability. She first filled in a SAQ with
the help of her mother (Mrs C) at the time of needing a reassessment of her needs due to the fact
that she was in an out-of borough supported living placement that was breaking down. Miss C filled
in the answers to the questions on the SAQ with support as she chose and then her mother filled in
the carers sections, some of which highlighted needs that Miss C had not identified.
Before the SAQ was looked at and went to panel Miss C was offered a supported living placement in
the borough due to the problems she had been experiencing elsewhere. She accepted this without
being given any time to consider the offer, which was a somewhat difficult experience as she finds
making quick decisions very stressful. At this placement a standard level of services was provided for
residents that did not fully meet the needs of Miss C who ended up not taking her medication
properly and not thriving physically or emotionally. There was no opportunity to build a personalised
package of care and Mrs C understands that the SDS budget was used to purchase the standard
package of support in this supported accommodation rather than build a package of self-directed
support.
After some months Miss C decided that she did not want to return to the supported accommodation
and she went to live back at Mrs C’s home. For a short time she maintained her tenancy in the hope
that she would be able to return and during this time Mrs C needed to go away. She enquired about
whether support would be able to be put in place for Miss C during this time but nothing was
forthcoming and so Mrs C herself put together a rota of family and friends who could help to
support Miss C while she was away.
Miss C filled in another SAQ with her social worker and Mrs C was asked not to fill in the carer’s
section of the form as the form had already started its process. Instead Mrs C was asked to submit
her input separately. Before Mrs C’s submission had been received Miss C was notified about the
number of hours of support she would be able to have. On the carer’s submission Mrs C stated that
she was unwilling to continue to give the level of support that she had been doing up till now to Miss
C. However no alteration was made to the number of hours of support that Miss C was offered.
Miss C is now receiving support from a local agency chosen by herself and Mrs C, paid for with her
personal budget. They are happy with this support. Although Miss C would be unable to manage her
budget herself, Mrs C does not recall ever being given the option to do this on her daughter’s behalf,
and so the personal Budget remains managed by LBM. This is fine while things remain as they are
but Mrs C can see the potential for using Miss C’s budget more flexibly and is unclear about how
alterations could be made to the use of the budget.
KEY MESSAGES
Market development of services that are able to adapt to individual needs and be more flexible with
changing circumstances would be desirable.
Carers’ submissions need to be considered as a routine part of the SAQ as they may have
considerable impact on the eventual outcome.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
26
CASE STUDY - TRANSITION
Mrs R, who is a British Arab, is a carer for her son (Mr R) who has autism and accompanying learning
disabilities and displays associated challenging behaviour. Mr R had his 18th
birthday in autumn 2011
and therefore moved from being supported through children’s services to adult services. He is still at
school and hoping to move on to college in 2013. While he was 17 Mr R had regular overnight care in
a residential care home for children with disabilities, which ceased when he reached the age of 18.
Shortly before he turned 18 Mr R was referred by children’s services to the Transition Team. Mrs R
particularly praises the support of the Transition Team during the last few months. However, as Mr
R’s needs are complex and due to a number of other complications, there has been considerable
delay in receiving a package of care under SDS and so Mr R has spent several months without being
able to use a Personal Budget. Factors that have been key in this include –
- Mrs R feels that referral to the Transitions Team should have been several months sooner to
allow the necessary time to plan services that Mr R would need from adult services.
- The only option initially presented to Mr and Mrs R was a local respite care home. When
they visited it was clear that this was not suitable for Mr R, partly due to the fact that the
premises were not secure and he is likely to wander off as there is an open door policy. He is
unable to keep himself safe out on his own. As Mr R is very active and boisterous they felt he
would need a service that was more suited to this side of his nature.
- The family were informed about another service that might be suitable and visited but at
present this only operates on Monday to Friday from 9am-3pm, which is during the time
that Mr R is still at school and so this would not be accessible except in the holidays. A
formal referral is now in the pipeline so that he could access this during the holidays.
- Arrangements were made for the family to use direct payments to pay a PA for Mr R, but the
initial hourly rate offered did not reflect the specialism and one –to-one nature of the care
that Mr R requires and so this has been renegotiated to a higher rate.
Mr R is now getting a Personal Budget and a pre-paid card managed by Mrs R. Mrs R says that she is
not sure what money is used to pay for what service with the pre-paid card. Confusion centres
around what this money can and can’t pay for – e.g. cab transport was arranged to take him to an
activity but due to the nature of his challenging behaviour the driver explained that extra valet
charges would be required. Mrs R is unsure about whether charges such as these and other
expenses would be met and is nervous that unwittingly she may do something wrong and pay out
money that should not have been used from the pre-paid card or conversely not pay someone who
should be paid. This leaves her concerned she may be asked to pay money back.
KEY MESSAGES
Considerable time needs to be allowed for successful and smooth transition from children’s to adult
services to allow for the individual complexities of each case.
There has been very little choice available for how to use the Personal Budget as there is not a local
range of providers offering suitable services. Mrs R feels that she would have valued knowing all
available options up front rather than looking at one and waiting to find out that is not suitable
before knowing about the next.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
27
CASE STUDY - MAINTAINING INDEPENDENCE
Miss B is a lady in her late 80s who has a number of physical disabilities and long term health
conditions that have resulted in her being physically unable to cope with keeping up her home and
aspects of her personal care. Her conditions include spinal problems, arthritis and heart disease.
Miss B had begun to become extremely worried about how she was going to be able to cope any
longer and felt very depressed. Her greatest fear was that she would need to go into residential care
and leave her home. She describes herself as “fiercely independent” and she had never asked
anyone for help before one particular practical problem led to her calling Social Services for help. As
a result she received a home visit and the Social Worker immediately recognised that there were a
range of other issues with which Miss B needed help. Miss B says that the Social Worker was so kind
and understanding that she felt able to admit how difficult she had been finding things. She says that
she felt safe with her and now wonders why she was so worried and wishes she had not “held out”
so long. The Social Worker completed the SAQ with Miss B and this was followed up by a visit from
another Social Worker to carry out an assessment.
Social Services clearly explained the Personal Budget to Miss B, who decided that she would value a
Merton Managed Account. She did not feel that she wanted to cope with managing her own budget.
She says that the Social Worker recommended a Care Worker to her and seemed to think very
carefully about finding someone who would be a good match for Miss B. Miss B now uses her budget
to pay for the Care Worker. Another benefit of this process has been that Miss B’s wider family, who
had not up till that point realised that she was no longer coping on her own, have also begun to give
support, so now at the weekend one of Miss B’s relatives gives her the help she needs. Although
Miss B cannot be sure of exactly how long the whole process took she says that it was a matter of
days rather than weeks for services to be put in place after her contact with the Council.
Miss B speaks glowingly of the support that she has received and says that without the kindness and
time taken by Social Services to really understand her needs, she feels that she would more than
likely no longer be alive. She values the fact that there are clear guidelines and boundaries about the
support that she can get so that she knows exactly where she is. She also says that she is now a
much happier person – she is no longer worried or depressed and feels confident that she will be
able to remain in her own home.
KEY MESSAGES
Social work skill in supporting someone to be honest about the extent of their needs and in
explaining the process clearly and thoroughly is vitally important.
Carefully planned support and an empathetic and unrushed approach can be emotionally as
important as the physical benefits.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
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CASE STUDY - AN OLDER PERSON WITH HIGH SUPPORT NEEDS
Miss M is a carer for her mother, Mrs M, who is in her 80s and has had a stroke and has been
diagnosed with dementia. Mrs M had been living alone with some support from a care worker for
short spells in the day. Mrs M had been having frequent hospital admissions, often after a fall, and it
was during one of her stays in hospital that a Social Worker explained to family members that Mrs M
may be able to get more help through the SDS process. Miss M and other family members filled in
the SAQ while Mrs M was in hospital and it was arranged that Mrs M would go into short term
residential respite while further services were put in place so that she could return home.
Miss M says that the process of coping with all that was going on at that time was “full-on” and that,
although she coped with the various forms fairly well, she describes herself as a confident
professional person and points out that many people may like more help with filling in the forms.
After a wait, which Miss M describes as perhaps a little longer than would have been ideal for her
mother, it was decided that Mrs M would be able to buy 24 hour live-in care with her budget. This
budget is managed, using a pre-paid card, by Miss M. Miss M feels that managing the card is
straightforward as it covers just the cost of the Care Worker that they have chosen to employ. There
were a few minor “teething problems” with money being downloaded onto the card at first but all is
now running smoothly.
Since this arrangement has been in place Mrs M’s health and wellbeing have improved dramatically.
She has had no further hospital admissions and no further falls and her dementia is now being
managed by her GP rather than by specialist mental health services. The consistency and familiarity
of 24 hour live in care has been instrumental in this successful outcome. Miss M feels that it is not
widely understood that a live-in 24 hour care arrangement rather than residential care might be an
option for customers such as her mother and would like to see it more widely publicised.
KEY MESSAGES
Live-in care can be an excellent option for people with high support needs and have a far wider
impact than just prevention of residential care.
Customer and Carer Experience of Self-Directed Support in Merton. March 2012.
30
Customer and
Carer
Experience of
Self-Directed
Support in
Merton
With grateful thanks to all those
customers and carers who took
part in giving feedback. Also thanks
to staff from London Borough of
Merton, Merton Mencap and
Carers Support Merton.
Jennie Chapman
March 2012