Customer and Carer Experience of Self Directed Support in ... and... · Customer and Carer Experience of Self-Directed Support in Merton. March 2012. 4 COMMUNICATION It should be

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


2

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.


3

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.


4

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.


5

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


6

• 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.


7

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.


8

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.


9

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 -


10

• 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


11

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.


12

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


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


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


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


16

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.


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


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.”


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.”


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.”


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.


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.


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.


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.


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.


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.


28

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.

APPENDIX 1 – SEVEN STEP PROCESS OF SELF-DIRECTED SUPPORT IN MERTON


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

Documents

Customer and Carer Experience of Self Directed Support in ... and... · Customer and Carer Experience of Self-Directed Support in Merton. March 2012. 4 COMMUNICATION It should be