Choice t My - People's Experiences of Self-directed Support and Social Care in Scottish Borders
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
My o r t
s u p py
m
choice
My Support My Choice:
People’s Experiences of
Self-directed Support
and Social Care in
Scottish Borders
August 2021
Table of Contents Acknowledgements and Dedication...............................................................................4 About this Report............................................................................................................4 COVID-19.........................................................................................................................4 Executive Summary.......................................................................................................5 Recommendations.........................................................................................................8 National and Local Context for SDS/ Social Care..........................................................12 Research Participants...................................................................................................14 Overall Experiences of SDS/ Social Care.......................................................................20 Information About SDS.................................................................................................21 Informed Choice and Control.......................................................................................29 Communication and Relationships with Social Work...................................................37 Care Staff Recruitment, Training and Quality...............................................................43 Independent Advocacy and Support............................................................................45 Response from Scottish Borders Council...................................................................47 Endnotes.......................................................................................................................49 Glossary.........................................................................................................................53 About the Project Partners...........................................................................................56 My Support My Choice: Scottish Borders - August 2021 2
List of Charts Chart 1: Respondents’ gender......................................................................................14 Chart 2: Respondents’ age............................................................................................15 Chart 3: Client Group/Disability/Long Term Condition (Survey)..................................16 Chart 4: Survey respondents’ religion..........................................................................17 Chart 5: Survey respondents’ sexual orientation.........................................................17 Chart 6: Survey respondents’ housing arrangements.................................................18 Chart 7: Survey respondents’ annual household income............................................19 Chart 8: “SDS has improved my social care experience” (Survey)...............................20 Chart 9: How did survey respondents first hear about SDS?.......................................22 Chart 10: Information received before discussing support (Survey)...........................24 Chart 11: “I felt prepared for my needs assessment” (Survey)...................................24 Chart 12: Discussing SDS options with professionals (Survey)....................................25 Chart 13: “The person I met explained things clearly to me” (Survey).......................26 Chart 14: “All my questions were answered” (Survey)................................................26 Chart 15: “Have you been told the amount of money you can spend on your support?” (Survey)........................................................................................................28 Chart 16: Enough time to choose SDS option (Survey)................................................29 Chart 17: “Waiting times, or waiting for responses, makes SDS more difficult for me” (Survey).........................................................................................................................30 Chart 18: “I am fully involved in all decisions about my care and support” (Survey).31 Chart 19: “I had a say in how my help, care or support was arranged” (Survey)........32 Chart 20: Who chose support arrangements? (Survey)..............................................32 Chart 21: Did you choose who manages your personal budget? (Survey)..................33 Chart 22: “Enough budget to meet my outcomes makes SDS easier for me” (Survey).........................................................................................................................34 Chart 23: “Lack of flexibility in how I can use my personal budget makes SDS more difficult” (Survey)..........................................................................................................36 Chart 24: “How happy are you with the conversations you have had about your support with professionals?” (Survey).........................................................................38 Chart 25: “Lack of a regular personal assistant (PA) makes SDS difficult for me” (Survey).........................................................................................................................43 Chart 26: “Access to independent advocacy makes SDS easier for me” (Survey).......45 Chart 27: “Access to independent information and support makes SDS easier for me” (Survey).................................................................................................................46 My Support My Choice: Scottish Borders - August 2021 3
Acknowledgements COVID-19
and Dedication Data collection ran from 1 November
2018 to 14 February 2020. As
This report is published with such, all responses reflect people’s
thanks to the people who shared experiences of SDS/ social care
their experiences and facilitated before the appearance of COVID-19
the research in Scottish Borders. in Scotland and people’s experiences
It is dedicated to members of the during the pandemic are not
research team and those who shared covered by the MSMC project.
their experiences as participants
who have since passed away. Nevertheless, this research represents
the most recent and comprehensive
reflection of people’s experiences
About this Report of SDS/ social care in Scotland
prior to COVID-19. As such, MSMC
This report uses data[1] from “My
provides vital evidence, analysis of
Support, My Choice: User Experiences
good practice and recommendations
of Self-directed Support and Social
for improvement in the review
Care in Scotland” (MSMC), a research
and reform of SDS/ social care
project run by the Health and Social
in the aftermath of COVID-19,
Care Alliance Scotland (the ALLIANCE)
based on people’s experiences.
and Self Directed Support Scotland
(SDSS), funded by the Scottish
Government. Focused on people’s
experiences in Scottish Borders,
the report starts by broadly setting
out the national and local context
for Self-directed Support (SDS) and
social care, followed by information
about the participants.[2] Subsequent
chapters explore people’s experiences
of SDS/ social care across Scottish
Borders. Key findings are highlighted
throughout, with a separate chapter
on recommendations. The report
concludes with a response to the
research from Scottish Borders Council
and Health and Social Care Partnership.
The document is part of a suite of
MSMC reports that also contains a
national report, other local authority
area reports, and thematic reports,
which are published separately.[3]
My Support My Choice: Scottish Borders - August 2021 4Executive Summary This report uses data from “My build on existing good practice, Support, My Choice: User Experiences and increase the effectiveness and of Self-directed Support and Social Care reach of positive SDS/ social care in Scotland” (MSMC), a mixed-methods experiences. The views expressed by research project run by the Health research participants and analysis of and Social Care Alliance Scotland the findings have led to a number of and Self Directed Support Scotland, recommendations, many of which echo funded by the Scottish Government. other independent reviews of SDS.[4] The aim of this research is to gain a better understanding of people’s Poverty and SDS experiences in Scottish Borders, filling a An estimated 24% of Scottish data gap and complementing the work households with a disabled person live of other independent evaluations. By in relative poverty after housing costs. highlighting evidence of good practice MSMC found that 57% of research and where improvements can be respondents in Scottish Borders who made, we can assist strategic planning provided income data lived below the and delivery of future SDS/ social care. poverty threshold. National and local Between November 2018 and February public bodies should take action to 2020, MSMC heard from 71 people in ensure that reductions in SDS budgets Scottish Borders who received SDS (or and tightened eligibility criteria do had been assessed in the previous 12 not negatively impact people on low months) via a survey and interviews. incomes who access or are trying to Research took place prior to the access social care, given that they appearance COVID-19 in Scotland. can lead to people having to manage Overall, MSMC heard from 637 without support, deteriorating people across Scotland via a survey, physical and mental health, and interviews and focus groups. As the demands on family and friends to largest direct national consultation of assume roles as unpaid carers. its kind to date, the national report provides vital evidence, analysis and Data Gathering and Analysis recommendations for improvement There are concerning gaps in national to SDS/ social care in the aftermath and regional SDS data gathering of the pandemic, based on people’s and analysis. Disaggregated data experiences. This report provides and intersectional analysis by analysis of the results from Scottish local and national public bodies Borders within that larger context. is essential to develop policy and Research participants in Scottish practice that prioritises equal Borders acknowledged SDS as access to social care for everyone, important to achieving a higher quality following human rights principles of life and independent living, and of equality, non-discrimination, reported positive experiences across participation and inclusion. several aspects. However, there are some key improvements that would respond to people’s concerns, My Support My Choice: Scottish Borders - August 2021 5
Overall Experiences of SDS quality information about SDS/
Most participants in Scottish Borders social care, in a range of accessible
reported that SDS had improved and tailored formats at different
their social care experience and points in their journey through the
shared a range of positive and system. In general, work is needed to
negative feedback when asked to ensure everyone is informed about
summarise their experiences. all four SDS options, and supported
to consider the advantages and
disadvantages of each SDS option
Information About SDS before making decisions – rather
Participants in Scottish Borders than being given information about a
found out about SDS from a range more limited list of options. Measures
of sources, and most reported should also be taken to ensure that
positive experiences. Most people people are given full and accessible
highlighted the value of face-to-face information about their budgets and
communication with social work, and other relevant financial information.
recommended that those wanting to
know more about SDS should get in Informed Choice and Control
touch with social work, independent
advocacy and independent advice Overall, most participants in Scottish
services as soon as possible. Borders felt they had enough
time to choose their SDS option.
Many participants indicated People reported variable wait times
they required more high-quality for assessments and those who
information at an earlier stage (before waited the longest also generally
needs assessments) to support reported the highest levels of stress
their decision making about how and difficulty in accessing SDS.
support would be arranged. Many
people had not been told about all A large majority of respondents in
four options when they started the Scottish Borders indicated that they are
process of accessing SDS. Some had on their preferred SDS option and felt
not been provided with accessible involved in decisions and arrangements
information or documentation, even about their care and support. While
after requesting it from social work. this is very encouraging, the finding
that more than a third had their SDS
This pattern of variable information option chosen for them by a health
about the four options continued or social work professional – rather
into people’s needs assessments. A than choosing themselves – is more
minority of people reported that they problematic. Professionals play an
had “all four options” discussed with important role in supporting access
them during their assessments. to appropriate services; however,
this should not extend to making
Half of the respondents in Scottish decisions on people’s behalf while
Borders indicated that they had the principles of choice and control
received information about how are clearly embedded in SDS policy.
much money they could spend on
their care and support. However, the Similarly, while it is positive that most
remaining half had either not received respondents in Scottish Borders were
that information or were unsure. offered the choice of who would
manage their personal budget, it is
Recommendations include ensuring concerning that just under a fifth
people have good access to high of people reported being offered
My Support My Choice: Scottish Borders - August 2021 6no choice, and a further fifth were in their SDS budgets (particularly
unsure; this also demonstrates that, when it came to having choice of care
amongst other things, they were not providers). Some would also welcome
fully offered all four SDS options. assistance from social workers and
third sector organisations in navigating
Most people indicated that having the bureaucratic processes to obtain
sufficient budget to meet their mobility vehicles and travel passes.
outcomes made SDS easier for them
– and highlighted the importance of Recommendations include providing
providing support for social activities social work professionals with training
as well as personal care to ensure a in supported decision making, and
good quality of life. People who used targeted efforts to ensure that all
SDS budgets to access short breaks people enjoy equal decision making
described them as benefiting both about their SDS option and support.
individuals and their families – an
important chance for people to relax. Communication and Relationships
Budgets and waiting times were with Social Work
prevailing themes when respondents Participants in Scottish Borders
discussed ongoing concerns with their highlighted that good, consistent,
needs assessments. Reductions to trusting relationships with
budgets and support has significant social workers and clear lines of
negative impacts on people’s mental communication are all essential for
and physical health. Any proposed positive and effective experiences
reductions in SDS budgets or support of SDS. A substantial majority of
should be communicated clearly participants reported positive and
and discussed with people well favourable experiences of assessments
in advance of any changes being and reviews with professionals,
introduced. Health and social care providing a range of good practice
staff should consider the possibility examples. However, some people
of isolation or mental health crisis outlined concerns about not
when changing packages and receiving full answers to questions
eligibility criteria and be able to raised during assessments and a
arrange reassessments and signpost small number of participants shared
support services where needed. troubling stories of being treated
Several people in Scottish Borders with disrespect by professionals.
highlighted the positive impact Several people raised the need for
of flexible support and SDS. This greater transparency about how care
flexibility could be in how people are decisions are made and by whom,
empowered and supported to use their alongside inclusive communication
SDS, but also related to people’s ability and easy access to information. Some
to have ongoing conversations with people reported difficulty obtaining
social work professionals and adjust paperwork and documentation
systems accordingly on a regular basis. concerning their care arrangements,
Participants – particularly those even after repeated requests
living in more rural areas of Scottish to social work departments.
Borders and those who are blind Recommendations include ensuring
or partially sighted – indicated that that social workers have the time
they need more acknowledgement and skills to build relationships and
and accommodation of travel costs trust with the people accessing SDS
My Support My Choice: Scottish Borders - August 2021 7and unpaid carers that they are with staff recruitment and training.
working with, building on existing Scottish Borders Council should work
good practice in Scottish Borders. with people who access SDS and
People should be informed promptly unpaid carers to improve systems
if their social worker changes and and processes related to care staff
have a right to request a new social recruitment, training and quality.
worker if trust breaks down. More
work is needed to improve the Independent Advocacy and Support
transparency of process – including
around how decisions are made Respondents in Scottish Borders value
about budgets and accessing SDS. and benefit from the provision of
independent advocacy, independent
advice and support services, which
Care Staff Recruitment, need sustainable resourcing to
Training and Quality continue their important role.
People generally reported good Focused efforts are required to
experiences of support worker ensure all people are aware of, and
recruitment, training and quality. can access, independent advocacy
Several respondents indicated and support services. Local peer
difficulties finding and retaining networks should also be encouraged
personal assistants (PAs) and care and supported. Encompass and the
workers that were suitable for their SDS Borders Forum were mentioned
requirements, and some people several times as helpful in supporting
would welcome more assistance people to navigate and access SDS.
Recommendations
People in Scottish Borders generally Poverty and SDS
reported that SDS had improved
their social care experience and 1. Action is required by national
have shared examples of good and local public bodies to ensure
practice from across the region, that SDS budget cuts and tightened
particularly about good conversations eligibility criteria do not negatively
and relationships with social work affect the physical and mental health
professionals, and involvement in care of people on low incomes who access
decisions. However, as this research or are applying for SDS/ social care.
highlights, there are key areas where
improvements could be made to Data Gathering and Analysis
respond to people’s concerns, build on
existing good practice, and increase the 2. There is a pressing need for local
effectiveness and reach of positive SDS and national public bodies to improve
experiences. The recommendations systematic and robust disaggregated
in the MSMC national and thematic data gathering and intersectional
reports would also usefully inform analysis about people who access
practice in Scottish Borders.[5] and apply for SDS/ social care.
My Support My Choice: Scottish Borders - August 2021 8Information About SDS than being given information about
3. People (service users and a more limited list of options, and
unpaid carers) need good access supported to consider the advantages
to publicly available, high quality and disadvantages of each SDS
information about SDS/ social care, option before making decisions.
in a range of accessible and tailored 10. Professionals should proactively
formats (e.g. hard copy and digital; check back in with people after
face-to-face; large print; Braille; Easy assessments to ensure any outstanding
Read; BSL). Information is required at concerns are addressed and resolved,
different points in a person’s journey and their care is working well.
through the social care system,
e.g. finding out/ first enquiry about 11. People should be offered a
SDS, pre-needs assessment, during variety of ways to contact social
needs assessment, after needs work, as best fits their access
assessment, once support is in place. needs and preferences. Social work
departments should consider different
4. A wider pool of professionals opportunities, including online chat
(health, education) should be taught functions, a freephone support line,
about SDS and how to signpost and direct email addresses so that
people to social work, independent people can communicate effectively
support, and appropriate resources. with social work professionals.
5. More information should be 12. People should always have
publicly available for people about access to independent advocacy
what to expect from interactions with and support for assessments and
social work, and about their rights. review meetings if they desire.
6. People should be provided 13. People should be provided
with timelines for each stage of with paper or digital (as preferred)
the process for accessing SDS, and copies of all documentation pertaining
transparency about where and when to their SDS, including personal
decisions about support are made. outcome plans, budget agreements,
Transparency would be improved and decisions about their support
by sharing more publicly available package. These documents should
information in accessible formats. be provided promptly and all
7. Sufficient time must be materials should be available in a
allocated for needs assessments variety of accessible formats.
and review meetings, to allow for 14. Everyone must have access to
detailed questions and consideration information about the budget available
of the four SDS options. to them for their care and support.
8. Further information and 15. People may want to take part
training for professionals may be in several conversations to support
required about the SDS options informed decision making about care
and supported decision making. charges, budgets and how they interact
9. Everyone should be informed with other income like social security.
about all four SDS options, rather
My Support My Choice: Scottish Borders - August 2021 916. Any proposed changes rights. Flexibility is required in a range
(particularly increases) in care charges of ways: to change SDS option; to
should be communicated clearly be able to choose how, where and
to—and discussed with—people who when to spend personal budgets;
access SDS/ social care well in advance with different amounts of spend and
of the changes being introduced. support at different times of the year.
22. Flexible, regular access to short
Informed Choice and Control breaks should be strongly encouraged
17. Systems could be improved because they are an essential element
to guarantee short waiting of SDS that result in good personal
times – for a needs assessment, outcomes for people who access social
review, or for support to be put care, families and unpaid carers.
in place – to help people avoid
unnecessary stress and anxiety, and 23. People – particularly those
deteriorations in their physical and living in more rural areas and those
mental health and wellbeing. who are blind or partially sighted
– require more acknowledgement
18. Targeted efforts are required and accommodation of travel
to ensure that people living in rural costs in their SDS budgets.
areas of Scottish Borders have a
meaningful choice between— 24. Many people could benefit from
and can access—all four SDS assistance from social workers and
options and appropriate person third sector organisations in navigating
centred, rights based care, without the bureaucratic processes to obtain
having to incur disproportionate mobility vehicles and travel passes.
expenditure or move house. 25. Professionals should
19. People must be treated fully incorporate equality
with dignity and respect in all assessments into their processes
interactions with health and for service users and families.
social care professionals.
Communication and Relationships
20. Any proposed reductions in with Social Work
SDS budgets/support should be
communicated clearly and discussed 26. Existing good work should
with people well in advance of any continue to ensure positive
changes being introduced. Health conversations and meaningful,
and social care staff should consider consistent relationships, with ongoing
the possibility of isolation or mental planning to guarantee high quality
health crisis when changing packages practice for all people using SDS.
and eligibility criteria and be able to 27. Social workers need to
arrange reassessments and signpost have the time and skills to build
support services where needed. relationships and trust with the
21. People need flexible budgets and people accessing SDS and unpaid
a focus on outcomes to enable them carers that they are working with.
to live as independently as possible 28. People’s opinions (spoken
and enjoy the full range of their human or written) should be recorded
My Support My Choice: Scottish Borders - August 2021 10and acknowledged during needs should be promptly supported by
assessments and review meetings to professionals, with appropriate
demonstrate the level of choice and future planning for contingencies.
control exercised over their support.
35. Health and social work
29. Social work professionals professionals should respect service
should be given training on how to users’ preferences if they do not wish
support disabled LGBT+ people with to be reliant on family members and
targeted support and information if friends for their care and support.
required, and local support groups
36. We encourage Scottish Border’s
should be appropriately funded.
Council to indicate document
30. Social work professionals should publication dates and webpage
proactively gather regular feedback timestamps. The Council’s website
– good and bad – from service users, could also provide further information
families and unpaid carers as a way to on their Equality Impact Assessments
support continuous improvement. and the role these play in SDS/ social
care decision making. To strengthen
31. Social work professionals should
participatory decision making,
pro-actively inform service users,
Scottish Borders Council could set
families and unpaid carers on a regular
out the steps taken to involve people
basis about how they can challenge
who use support, unpaid carers,
decisions, access independent
and partner organisations in the
advocacy and support, local authority
development of eligibility criteria
complaints procedures and the
and the delivery of support. Further
independent oversight of the Scottish
details of other engagement with
Public Services Ombudsman (SPSO).
people with lived experience would
32. Work is needed to ensure support greater transparency.
systematic good practice and
consistent transparency across Care Staff, Recruitment,
several elements of SDS/ social care, Training and Quality
including eligibility criteria, needs
37. Some people need more help
assessments, budgets and support
to recruit and train care staff. Local
packages, changes to support,
authorities and health and social care
participation in decision making
partnerships should work with people
and how to challenge decisions.
who access SDS and unpaid carers
33. Professionals should ensure to improve systems and processes
that all unpaid carers are offered related to care staff recruitment,
carer’s assessments/Adult Carer training and quality, including
Support Plans and have their diversification of the workforce.
rights explained to them.
38. Care staff training costs (e.g.
34. Professionals should not assume specialist first aid or medical training
that family members and friends are required for them to carry out their
able or suitable to provide unpaid job appropriately) should be included
care. People who wish to reduce the in people’s SDS budgets. This would
amount of unpaid care they provide
My Support My Choice: Scottish Borders - August 2021 11help ensure a quality care workforce local independent advocacy, advice
(including PAs) in each local area. and support organisations, so they
can refer people to these resources.
Independent Advocacy and Support 41. Social work professionals
39. Independent advocacy, should proactively provide people
independent advice and support with information about independent
services need sustainable resources advocacy, advice and support
to continue their important organisations in accessible formats.
role in Scottish Borders.
42. Local peer networks, including
40. Local authority and health and the Scottish Borders SDS Forum, should
social care partnership staff should be be encouraged and supported.
given information and training about
National and Local Context
for SDS/ Social Care
National Context Scottish Borders Council publishes
a range of information for people
Self-directed Support (SDS) is who access or wish to access SDS
Scotland’s approach to social care. It is on their website (searchable via the
defined as “the support individuals and search bar on the council website).[9]
families have after making an informed This provides a definition of SDS,
choice on how their Individual Budget outlines eligibility criteria, introduces
is used to meet the outcomes they the assessment process and how
have agreed.”[6] For more information people can manage support and
about the national context of SDS/ budgets, and shares information on
social care in Scotland, please refer how direct payments are managed.
to the MSMC national report.[7] Scottish Borders Health and Social
Care Partnership also published a
Local Context publicly accessible and relatively recent
Scottish Borders is a council area strategic social care plan (spanning
with an approximate population 2019-2021),[10] and a comprehensive
of 115,000 people, across 54,000 document, “Introduction to Social
households.[8] Scottish Borders is a Care”[11] explaining the assessment
largely rural area, covering a significant process, eligibility criteria, risk
geographical area to the south of categories, and further information
Scotland, and people live in both about support services. They provide
rural areas and towns. It is situated a similar document on “Preparing
south of Edinburgh and Lothian, with for Assessment”.[12] These are all
Dumfries and Galloway to the west welcome examples of good practice
and Northumberland to the south. in terms of transparency of process
and clear information provision.
My Support My Choice: Scottish Borders - August 2021 12The website also signposts people be some need for alternative
to Encompass[13] (an independent support or advice and appropriate
organisation that supports people arrangements for review over the
who use direct payments), and foreseeable future or longer term.
other resources and links to local
independent support organisations The eligibility criteria outlined by
– particularly for people who are Scottish Borders Council states that
not deemed eligible for SDS. Prior support is available to “those people
to COVID-19, the website also who are at the greatest risk”.[15]
signposted the “What Matters Hub”, Support is not provided via SDS to
a drop in community assistance people who are assessed as being
forum that offered a range of at a “moderate” or “low” risk level,
sessions around social care. only those who are at “critical” or
The eligibility criteria outlined on the “substantial” risk. Scottish Borders
Scottish Borders Council website reflect Council defines these terms as follows:
the National Eligibility Framework,
which categorises risk as being critical, • “Critical - major risks to your
substantial, moderate, or low:[14] independent living or health and
well being which are likely to
• Critical risk: indicates that there require immediate or imminent
are major risks to an individual’s provision of services.
independent living or health • Substantial - significant risks
and well-being and likely to call to your independent living or
for the immediate or imminent health and well being which are
provision of social care services. likely to require immediate or
• Substantial risk: indicates that imminent provision of services.
there are significant risks to an • Moderate - risks to your independent
individual’s independence or health living or health and well being.*
and wellbeing and likely to call
for the immediate or imminent • Low - issues around your quality
provision of social care services. of life but low risks to your
independence and well being.*
• Moderate risk: indicates that there
are some risks to an individual’s * Resources are not available to meet
independence or health and these needs. However, we will provide
wellbeing. These may call for the you with information and advice
provision of some social care services about alternative sources of support
managed and prioritised on an on- with appropriate arrangements
going basis or they may simply be for review, if required.”[16]
manageable over the foreseeable
future without service provision, with We encourage Scottish Border’s
appropriate arrangements for review. Council to indicate document
publication dates and webpage
• Low risk: indicates that there may timestamps. The Council’s website
be some quality of life issues, could also provide further information
but low risks to an individual’s on their Equality Impact Assessments
independence or health and and the role these play in SDS/ social
wellbeing with very limited, if any, care decision making. Finally, to
requirement for the provision of strengthen participatory decision
social care services. There may making, Scottish Borders Council could
My Support My Choice: Scottish Borders - August 2021 13set out the steps taken to involve interviewees that Scottish Borders
people who use support, unpaid Council were in regular conversation
carers, and partner organisations in with the Scottish Borders SDS Forum.
the development of eligibility criteria Further details of other engagement
and the delivery of support. For with people with lived experience
example, we know from speaking to would support greater transparency.
Research Participants
MSMC heard about the experiences alarms and telecare services (with or
of 71 people who use or were being without SDS) in that wider definition.
assessed for SDS in Scottish Borders.
We interviewed 11 people who spoke Chart 1: Respondents’ gender
about their own experiences and the
experiences of other members of their
household who use SDS (spanning Prefer not
the experience of a total of 13 people to say
who use SDS or who were being
9
assessed for SDS). A further 58 people
from Scottish Borders completed the
survey. Throughout this report some
participant details (e.g. age) have been
changed slightly to preserve anonymity,
while maintaining the most important Women
information. Where changes have been Men
made to quotations those alterations 22 40
are indicated via square brackets (e.g.
“My advocate, [Name], was great”).
Where possible, we have compared
our participant data to local data and
figures from Public Health Scotland’s Gender
(PHS, formerly Information Services Overall, 40 women (56% of
Division) 2017-2018 experimental respondents) and 22 men (30%
statistics on social care in Scotland.[17] of respondents) participated
While not comprehensive, PHS have in MSMC in Scottish Borders. A
demographic statistics on people further nine people (13%) preferred
using SDS, and accessing social care not to disclose their gender.
support services more generally,
that is provided by local authorities, While PHS figures are not available
including Scottish Borders Council. PHS for the division of men and women
include people who use SDS within accessing SDS (nationally or in Scottish
their wider discussions of people Borders), they do publish statistics
receiving “social care support”, but on the number of men and women
also include care home residents receiving social care support services
and people who use community more generally (of whom an estimated
My Support My Choice: Scottish Borders - August 2021 1439% access SDS). PHS reported that in over 65 years old, 22% were aged 18-
2017-2018 61% of people accessing 64, and 9% were under 18 years old.[21]
social care support in Scottish Borders
were women and 39% were men.[18] Ethnicity
50 MSMC survey respondents
Age in Scottish Borders identified as
We asked all participants to share their white, and one survey respondent
age. Of the 61 people who chose to identified as “Asian, Asian Scottish,
answer the question, one (2%) was or Asian British”. A further seven
under 18 years old, six (10%) were people chose not to describe their
between 18 and 40 years old, 13 (21%) ethnicity. Most interviewees did
were between 41 and 64 years old, and not disclose their ethnicity when
41 (67%) were 65 years or older.[19] self-describing themselves, and
the majority of those that did
Chart 2: Respondents’ age described themselves as “white”.
The 2011 Scottish Census indicated
41 that 95.2% of the population of
Scottish Borders identified as “White:
Scottish” (78.8%) or “White: Other
British” (16.4%), with a further 3.5%
selecting “White: Irish” (0.7%), “White:
Polish” (1.1%), or “White: Other”
13 (1.7%). The remaining people identified
as being part of minority ethnic groups:
6 0.6% of the population identified as
1 “Asian”, “Scottish Asian”, or “British
Asian”, and 0.6% as belonging to “other
Under 18-40 41-64 65 or ethnic groups”. The overall spread
of MSMC respondents is slightly less
18 older
ethnically diverse than 2011 Scottish
Census data for Scottish Borders.[22]
In mid-2018, 55% of the population
of Scottish Borders was over 45 PHS do not provide a disaggregated
years old (higher than the Scottish breakdown of the ethnicity of people
average of 47%), with the average accessing SDS. They have some
age expected to increase, especially disaggregated data on the ethnicity of
in the 75 and over age group.[20] people receiving social care support
services more generally (of whom an
PHS do not provide an overall estimated 39% access SDS), using the
breakdown of age groups accessing limited categories of “White”, “Other”,
SDS, although age group data is and “Not provided/Not known”. PHS
provided by SDS Option Chosen and reported that in 2017/2018 in Scottish
Client Group Profile. PHS provide Borders, 91% of people accessing social
age disaggregated data on people care support were “White”, 8% were
receiving social care support services listed as ethnicity “not provided/not
more generally within Scottish Borders known”, and 1% categorised as “Other”
(of whom an estimated 39% access (including “Caribbean or Black, African,
SDS). PHS reported that in 2017-2018 Asian and Other Ethnic Groups”).[23]
in Scottish Borders, 77% of people
accessing social care support were
My Support My Choice: Scottish Borders - August 2021 15Client Group/Disability/ multiple conditions. 22 people
Long Term Condition (30%) said they live with a long term
condition, 21 people (30%) selected
MSMC survey respondents in Scottish physical disability, and 17 people
Borders self-identified as living with a (24%) stated that they experienced
range of conditions, with the majority “problems connected with ageing”.[24]
reporting that they were living with
Chart 3: Client Group/Disability/Long Term Condition (Survey)
Long term condition 22
Physical disability 21
Problems connected with ageing 17
Blind or visual impairment 11
Dementia 10
Mental health 10
Deaf or hearing impairment 9
Learning disability 6
Prefer not to say 6
Asperger's or autism 3
Learning and physical disability 1
Other 11
Interviewees also discussed their feature in more than one client group
conditions, and – if they were unpaid simultaneously. Overall, PHS estimate
carers – those of the people for that 68% of people accessing SDS
whom they care. Their reasons for did so because they were “elderly/
accessing SDS were broadly in keeping frail”, 35% due to a physical or sensory
with survey respondents’. Of the 13 disability, 12% because of a learning
people whose experiences of SDS we disability, 13% due to dementia, 9%
heard about during interviews, 12 as a result of their mental health,
accessed SDS because of their own and 6% for “other” reasons. A
conditions, and one was awaiting further 0.4% did not have their
the result of their first assessment. reason for accessing SDS recorded.
PHS listed the following client
groups for people in Scottish Borders Religion
accessing SDS in 2017-2018: frail/ When asked about their religion
elderly, physical and sensory disability, (if any), 19 survey respondents
learning disability, dementia, mental (33%) stated “none”, 22 were part
health, other, and not recorded.[25] of the Church of Scotland (38%),
These broad categories do not five described themselves as “other
directly align with those tracked in Christian” (9%), and two were
MSMC. As with MSMC, people could
My Support My Choice: Scottish Borders - August 2021 16Roman Catholic (3%). Ten people MSMC respondents is slightly less
(17%) preferred not to answer. religiously diverse than 2011 Scottish
Census data for Scottish Borders.[26]
Most of the interviewees did not Data about people’s religion is not
choose to explicitly disclose their available on the PHS dashboard.
religion when self-describing
themselves. The overall spread of
Chart 4: Survey respondents’ religion
None 19
Church of Scotland 22
Prefer Not to Say 10
Other Christian 5
Roman Catholic 2
Sexual Orientation Chart 5: Survey respondents’
44 survey respondents described their sexual orientation
sexual orientation as heterosexual or
straight and one person was bisexual.
Bisexual, 1 Prefer not
A further six people stated that they
preferred not to disclose their sexual to say, 13
orientation, and seven people did not
answer the question. The 2011 Scottish
Census did not record data on sexual
orientation at local authority level
(although the 2022 Scottish Census
is expected to do so); as such, we Heterosexual/
do not have local statistics on sexual Straight, 44
orientation available as a comparison.
Data on people’s sexual orientation is
not available on the PHS dashboard.
Housing
40 survey respondents (69%) either
rented or owned their own home,
six people (10%) reported that
they lived in the home of a family
member, five (10%) lived in supported
accommodation, and one (2%) lived
My Support My Choice: Scottish Borders - August 2021 17in a “retirement flat for the elderly”. current situations, spanning a
Six people selected “prefer not to similar range of options to survey
say” (10%). Data on people’s housing respondents. Of those who discussed
situations (other than residential care) their housing arrangements, most
is not available on the PHS dashboard. people lived independently in their
own home, followed by those who
When discussing housing, several lived with a family member.
interviewees spoke about their
Chart 6: Survey respondents’ housing arrangements
Owns/Rents Property 40
Prefer not to say 6
Lives in Supported Accomodation 5
Other 7
Household Income
We asked survey respondents about
their household income. 28 survey
respondents chose to disclose their
annual household income. We
were interested in this information
because in Scotland an estimated
24% of households with a disabled
person live in relative poverty after
housing costs, compared to 17% of
the population with nobody with
a disability in the household.[27]
None of the interviewees disclosed
their household income when
self-describing themselves,
although many commented on
the negative impact that limited or
reduced SDS/ social care budgets
and social security entitlements
had on their quality of life.
My Support My Choice: Scottish Borders - August 2021 18Chart 7: Survey respondents’ annual household income
£52,000 or above 3
£36,400 - £51,999 1
£31,200 - £36,399 2
£26,000 - £31,199 1
£20,800 - £25,999 2
£15,600 - £20,799 3
£10,400 - £15,599 8
£5,200 - £10,399 7
Up to £5,199 1
Prefer not to say 30
According to Scottish Government
data, the median housing income SDS Option
in Scotland in 2015-2018, before Of the 46 participants in Scottish
housing costs, was £499 per week Borders who shared which SDS option
(£25,948 per annum).[28] The relative they used, 19 people (41%) indicated
poverty threshold was defined as they used Option 1, one person used
household income below 60% of Option 2, 13 people (28%) used Option
the median, which for the same 3, and seven people (15%) used Option
period was defined as £302 per week 4. Six people (13%) stated that they
(£15,704 per annum).[29] Based on this did not know what option they used.
definition, 16 (57%) of the respondents
in Scottish Borders who chose to Figures from PHS indicate that in
provide details of their household 2017-18 there were 448 people in
income are living below the poverty Scottish Borders using SDS Option 1,
threshold. Data on the household ten using Option 2, 2,979 using Option
incomes of people accessing SDS is 3, and 174 using Option 4.[30] In some
not available on the PHS dashboard. instances, people are logged as being
on two options simultaneously (e.g.
Options 1 and 3) rather than Option
Poverty and SDS: Reductions 4, which distorts these figures.
in SDS budgets and tightened
eligibility criteria can pose serious Data Gathering and Analysis
risks to people on low incomes
who access or are trying to access As the chapter on research participants
social care. It can result in people demonstrates, there are concerning
having to manage without support, gaps in SDS data gathering, analysis
risks deterioration in physical and and reporting across Scotland. PHS
mental health, and unacceptable have reflected on difficulties gathering
demands on family and friends to disaggregated data on people’s use of
assume roles as unpaid carers. and experiences of SDS/ social care in
their experimental statistics publication
My Support My Choice: Scottish Borders - August 2021 19Insights into Social Care in Scotland.[31]
They highlight differences in reporting Data Gathering and Analysis:
periods for social care data across Disaggregated data gathering
local authorities, and that some local and intersectional analysis
authorities and social care partnerships is essential to develop fully
were either not tracking or not able to realised policies and practices
share disaggregated data about SDS that prioritise equal access to
and the people using it.[32] Data gaps SDS/ social care for everyone,
are also in part due to existing patterns following human rights principles
of data collation – leading, for example, of equality, non-discrimination,
to the PHS Social Care Information participation and inclusion. To
Dashboard tracking ethnicity avoid gaps and improve analysis,
via the limited and problematic we recommend systematic and
categories of “White”, “Other”, and robust data gathering by local and
“Not provided/ Not known”.[33] national public bodies on people
who access SDS, disaggregated
by all protected characteristics,
including age, gender, sexual
orientation, ethnicity, and
religion, as well as socio-economic
information like household
income and the Scottish Index of
Multiple Deprivation (SIMD).
Overall Experiences of SDS/ Social Care
We asked survey respondents whether Chart 8: “SDS has improved my
they felt that SDS had improved their social care experience” (Survey)
social care experience. Of the 32
people who answered this question
in Scottish Borders, 27 (84%) stated Unsure
that they “strongly agree” or “agree” 3
with the statement “SDS would/has
improve/d my social care experience”.
Two people (6%) strongly disagreed
and three (10%) were unsure. This
was a higher satisfaction rate than
across Scotland more broadly (74%). Strongly
disagree/ Strongly
disagree agree/ agree
2 27
My Support My Choice: Scottish Borders - August 2021 20Survey respondents and interviewees However, some people were more
were asked to share an overall cautious or explicitly negative about
summary of their experiences and SDS, particularly relating to difficulties
any advice they might have to offer with paperwork and assessment
other people considering using processes, and insufficient budgets:
SDS. Several of the participants’
statements were positive, such as: “I would recommend it as it gives
you as much self advocacy as
“I have been delighted with possible in your care options, but
the removal of stress.” also be aware that it is not a blank
slate, there are still restrictions.
“It allows you to be flexible and But it was the best option by
in control of your own support.” miles for our circumstances.”
“I would say do this. It’s fantastic “Read up on SDS. Be prepared
and means I choose who works for a fight with social work.
for me and what time they come; Be prepared to be fobbed off
it totally meets my needs.” and told there is no money. Be
“It is good, I am pleased I have prepared to be only given one
done it, but it was very hard.” option. Stand up for yourself
and your family. Be really clear
“SDS kept my independence, […] what it is you want from SDS.”
giving me that kind of control
and flexibility that ensures that I “If what we experienced was
live my life the way I want to live SDS I would suggest that [other
it, rather than being dictated by people] don’t waste their time.”
agencies or other people’s ideas “Stay clear […] not very
of how I live my life. That, for professional or competent and
me, is the biggest part of it.” will get nowhere, probably
a money saving tactic.”
Information About SDS
Finding Out About SDS people (5%) first head about SDS from
an independent support organisation,
We asked participants in Scottish Borders two from an information leaflet/poster,
how they first found out about SDS. one from an independent advocate,
21 survey respondents (38%) first one from their own research, and one
heard from a social work professional from an unspecified “other” source.
(e.g. a social worker/social work
assistant or an occupational therapist),
13 (23%) heard from friends or family
members, and nine (16%) from NHS
health staff, including nurses working
in the community. A further three
My Support My Choice: Scottish Borders - August 2021 21Chart 9: How did survey respondents first hear about SDS?
Social worker 21
Family or friends 13
Healthcare professional 9
No information / MSMC survey 5
Independent support organisation 3
Information leaflet/poster 2
Independent advocate 1
Own research 1
Other 1
Five survey respondents reported that
they had never received information and was alarmed by the state I
about SDS, of whom three stated that had allowed to get it into. ‘You
they first heard about SDS via this need help to get this sorted out’,
research project. Some interviewees [they] said. […] So that was how
also said that they did not understand Self-directed Support came in.”
or had not had SDS fully explained
to them, even though they used Other interviewees indicated
SDS, and had done for some time. that friends provided them with
information and advice about SDS. One
Among the interviewees, social work participant changed their SDS option
was the most common method after they discussed their support
through which people first heard with a friend, having previously been
about SDS – usually mentioned unaware of the different options:
alongside Encompass, as twin sources
of information. This was followed “I actually heard about [Option
by people hearing from friends 1] from a friend. I was using the
or family members, information council service at that time, but
leaflets, and one person’s GP. […] I was getting totally frustrated
The interviewees who first heard with it, because I worked more
about SDS through their social hours then, I was working more
workers praised the assistance they towards full time at that point.
provided. One interviewee highlighted […] They had their times, they
their social worker’s role in helping had their slots, and you were to
them to realise that they needed fit into that. […] So, I was talking
more support and telling them to a friend who was on direct
about SDS. They explained that: payments […] so I shifted over,
and it was the best thing I ever
“It was my social worker. […] did, to become the employer.”
I was having bother keeping
my house in order and [they]
actually came around one day
My Support My Choice: Scottish Borders - August 2021 22A different interviewee reported that Information and Preparedness
they were advised to access SDS by Before Assessments
their GP, and to do so promptly:
We asked survey respondents how
much information they received on
“The local doctor said, ‘You each of the SDS options before meeting
better apply for care because it’s with a professional to discuss their
going to be more difficult, they support, and whether it was enough
are going to close the doors in a information for their requirements.
little bit. You better apply now.’”
As the chart indicates, across the
One interviewee recounted that SDS options most respondents
realising that they needed support in Scottish Borders received “all
was not easy and involved some self- the information [they] wanted”
denial. An advocate (employed for (respectively, 60% (Option 1), 41%
another purpose) then suggested that (Option 2), 50% (Option 3) and 63%
they would benefit from accessing (Option 4)). However, it is concerning
SDS, which proved helpful. Another that most people for Option 2, and
interviewee described how a family a large minority of people across
member read about SDS at a public the other three options, either had
information event in another local no information or were left wanting
authority. This led to the family more in advance of their assessment.
requesting a needs assessment from The detail of those who wanted
their local social work department, more information is as follows:
and a SDS package was instated. Option 1: 28% of respondents said
that they received “some, but not
Finding Out About SDS: The enough” or no information, and 12%
research indicates that people in received “enough but wanted more”.
Scottish Borders generally had good Option 2: 47% of respondents
experiences finding out about SDS reported that they had “some, but not
from social work professionals and enough” or no information, and 12%
local independent support and received “enough but wanted more”.
advice organisations (specifically
Encompass, in several cases). There Option 3: 38% of respondents said
are some people in Scottish Borders that they had “some, but not enough”
who require improved access to or no information, and 13% received
information about SDS, and it “enough but wanted more”.
would be helpful to widen the pool Option 4: 32% of respondents said
of professionals who are informed they had received “some, but not
about SDS and can encourage enough” or no information, and 5%
people to access it. Making more received “enough but wanted more”.
use of educational professionals,
hospital staff, GPs and other
community health practitioners
would be valuable in increasing the
range of sources of information for
people, as well as building on the
existing expertise and resourcing
of social workers and independent
advice and support organisations.
My Support My Choice: Scottish Borders - August 2021 23You can also read
