Review of services for people who have had a stroke and
their carers – Guidance
The aim of the review is to promote improvement in the delivery and commissioning of health and
social services for people who have had a stroke or TIA by:
• Producing robust and objective local area-based assessments of the pathways followed by people
who have a stroke or a TIA, along with supporting benchmarking information.
• Ensuring appropriate action takes place in the areas where performance is weakest.
• Publishing a national report setting out recommendations for service providers, commissioners,
stroke networks and central Government.
The main output from the review will be the assessment of the quality of the local health and social
services provided to people who have had a stroke/TIA and their carers for each local area in England,
as defined by PCT boundaries. This assessment will be structured using a „performance framework‟
based on the Quality Markers in the National Stroke Strategy.
General guidance on the forms
The majority of questions ask about systems and policies. A small number ask for service-user specific
data. In general questions should be answered:
• for 'point in time' questions (e.g. “Is there a pathway in place..”): for the position as of 1/6/2010 (start
of data collection)
• for 'interval' questions (e.g. “How may people received this service…” ): the period is generally
A number of multiple-choice questions use the options listed below (or similar). For these questions
answers should be estimated using the following general principles:
• all/almost all = over 90%,
• most = between 50% and 90%,
• some = between 10% and 50% (including 50%)
• few/none = under 10%.
Often these options apply to situations where there may be local variation between providers (e.g. a
support service is available in one part of the PCT/Social Services area but not in another). In these
cases the answer should be estimated based on the proportion of people who have had a stroke
typically seen by each relevant service.
Most of the questions will form part of the scored assessment and hence are mandatory. If answers to
these questions are left blank they will generally be treated as if the lowest scoring relevant value had
been give. There are a small number of optional questions (clearly described as such in the forms)
which will not be used in the scored assessment, which will be fed back as part of the supporting
benchmarking data and/or used in the review‟s national report.
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Our questions, guidance and pick-list options aim to allow for most arrangements, but we can not cover
all possible variations. If a term requires further interpretation in order to answer a question, focus on
what local arrangements or policies do (outcomes) rather than on its name. For example, a number of
questions ask about the availability of local guidance. This applies to documents titled "guidance", but it
also includes protocols, best practice statements and procedure guides.
While many questions in the forms draw on existing national guidance, others are designed to look at
good practice, as suggested, for example, by groups representing people who have had a stroke -
hence this form should NOT be interpreted as giving new national guidance. Similarly, the form draws
on a number of issues included in the National Stroke Strategy (2007). This strategy sets out
improvements on a ten year timescale and hence answers will not be interpreted as if all elements can
be expected to be in place already.
It is the responsibility of submitting organisations to supply accurate, comprehensive, good quality data
within data collection deadlines for standard and special data collections. This is a self-declaration
form. In submitting a return trusts and councils are stating that the information submitted is accurate,
comprehensive, of good quality and is not materially misleading (a standard often used by auditors).
PCTs and councils should be able to support their answers with evidence (but this should not be
submitted to CQC). It should be noted that
• For the main data collection CQC is planning to carry out a number of spot-checks, which will involve
someone from CQC visiting the lead contact at the organisation and asking to see supporting
documentation or evidence.
• Both the overall assessments and the supporting benchmarking indicators will be published by CQC.
If a PCT or council thinks that their performance has been adversely affected by unforeseen or
emergency circumstances outside of their control and where they could not reasonably be expected to
have contingency in place to mitigate or remove this effect, they should contact the Review team to
discuss the issue and whether it may fall under the Commission's policy on extenuating circumstances.
Fuller details on this process are available through the review web-page, which also includes a
Frequently Asked Questions file about the review, which will be updated regularly during the data
This in an Excel copy of a web-based data collection form for this review. It is provided to assist with
data collection locally (as it is easier to print out and share with colleagues). This form cannot be used
to submit data to CQC. All data submissions must be made via the relevant web-based data collection
forms as set out in the supporting guidance available on the review web page.
This data collection has been approved by the Review of Central Returns Steering Committee (ROCR)
as a one-off mandatory data collection (reference: ROCR-Lite/10/0004MAND)
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CQC Stroke Review: Data collection form Adult Social Services Departments (final)
1 Involvement in planning transfer home after a stroke
a) Are there locally negotiated policies in place with health services to refer people who have been admitted to
hospital following a stroke for an assessment of their social care needs? Yes-with all relevant services, Yes-with most, Yes-
See "General Guidance" (on the sheet Introduction) how to interpret these options. with some, No
b) Do these policies/procedures state that adult social services should be involved in planning the discharge and
transfer home from hospital of people assessed as needing social care support?
c) Do these policies/procedures state that all people who are leaving hospital after a stroke should be offered an
assessment of their social needs?
d) Are social services staff based in local acute hospitals to help manage transfer home for people who have had a
e) Are there locally negotiated policies/procedures in place which specify how much notice adult social services
should be given of the expected date of discharge of stroke patients who may need a social care assessment?
f) If yes to 'e)', how much notice do these policies/procedures say should be given? days
2 Reviews after transfer home
The following question refer to the local policies/guidelines relevant to social care reviews/assessments which would apply to people who have
had a stroke and been referred to social services following their transfer home. (Note: These policies/guidelines may not be stroke specific)
Do these policies/guidelines specify that reviews should … (see a-h)?
Were these aspects of care monitored by commissioners during 2009/10 (e.g. using ongoing performance info. or case note audits)?
a) ... take place face to face with the service user Yes-monitored/Yes-not monitored/No
b) …. involve carers/family members (with their and the service user's agreement) "
c) ... look at informal support networks (e.g. grandparent in role looking after children) "
d) ... take account of the needs of others living with the person with stroke "
e) ... be written up and a copy given to the service user "
f) ...support people to increase their productive role in their community "
g) … assess the impact of individual budgets/direct payments (where these have been provided) "
h) … assess the impact of major aids and adaptations (where these have been provided) "
i) Are there mechanisms in place which enable the council to monitor outcomes for people with Yes/No-but plans in place/No
ineligible needs who are signposted to other sources of help (e.g. who may wish to contact social
services in future either on ad hoc support or if circumstances change)?
j) If yes, outline how these mechanisms work
k) Do service users get advice and assistance (in hospital and/or following transfer home) to enable yes- all/almost all, yes-most, yes-some, none
them to self assess their social care needs?
l) Are those who give this advice and assistance trained in the needs of those with stroke including "
communication access training?
m) Are tools/training provided to service users to support self assessment of social needs? "
n) Do assessments/reviews consider the needs and aspirations of carers and the person with "
3 Information provision
a) Is information provided to stroke survivors and carers, which sets out what social Yes-all areas, Yes-most areas, Yes-some areas, No, Don't Know
care services/support are available to them?
b) Is stroke-specific information provided to people who have had a stroke?
c) Does the information provided set out how the assessment and review
d) Does the information provided clearly state the right of people who have had a
stroke to ask a review at any time AND how to go about requesting such a
e) Does it clearly set out carers' rights to ask for an assessment?
f) Does it set out how financial assessments are undertaken?
g) Does it make clear that financial assessments are separate from assessment of
IN CONFIDENCE 5 1/24/2011
h) Does it set out standards for how soon assessments will be completed after they if yes, how soon.. days
i) Does it set out standards for how soon services will start after the assessment is if yes, how soon.. days
j) Does the information provided to people receiving social care support make
clear when/why services are likely to end?
k) Is information handed over in person, with time to explain? Yes-always, Yes-usually, Yes-sometimes, No
l) Were users involved in design and content of all/most/some of this information? yes- all/almost all, yes-most, yes-some, none
m) Were people with aphasia involved in design and content of this information? yes- all/almost all, yes-most, yes-some, none
n) Does this information meet communication access guidelines lines („aphasia- yes- all/almost all, yes-most, yes-some, none
Is stroke-specific information available for:
o) stroke survivors of working age? Yes-all areas, Yes-some areas, No, Don't Know
p) stroke survivors with children?
What support is available to help people who have had a stroke to ...
phone advice? face-to-face printed
a) ...access benefits and grants (e.g. to understand eligibility or fill in forms) Yes- for all, Yes- for most, Yes-
b) ...apply for individual budgets/direct payments for some, No
c) ...manage individual budgets/direct payments
phone advice? advice?
d) Are the staff providing this support trained to understand the needs of people Yes-all, Yes-most, Yes-some, No
who have had a stroke, including people with aphasia?
e) Is this support proactive? i.e. do staff actively chase/check that things have yes, no
happened - rather than just respond when the service user gets in contact?
Which of the following does the social services department provide to people not receiving council services (e.g. as no eligible needs or following financial
f) general advice on arranging privately funded care Yes- for all, Yes- for most, Yes- for some, No
g) directory of private services
h) contacts with local user groups
i) contact with voluntary sector organisations
j) advocacy services to support people with stroke who have ad hoc needs e.g.
filling in forms, writing administrative letters
5 Helping people achieve autonomy and independence
Are the following activities available in the council area in ways which are accessible to people living with a stroke-related disability?
NOTE: This question is about which services Social Care are able to signpost people to locally, not who provides them (e.g. if some one with aphasia asked
whether exercise classes are available suitable for people with aphasia, could you help them?).
people with physical disabilities suitability people with aphasia
a) Sport facilities/exercise classes Yes-in all
b) Vocational training/education/evening classes areas, Yes-in
c) Volunteering opportunities most areas,
d) Visits to the cinema/theatre/art galleries/museums Yes-in some
e) Is support available with transport to leisure activities (booking or arranging Don't Know
transport) for people with stroke-related disabilities?
f) Are schemes available locally to arrange people to be accompanied by
someone (other than existing carer) to help them take part in leisure activities?
g) Do local transport plans consider the specific problems that stroke can cause… re mobility? re. communication?
h) Have local Pathways to Work partnerships and Joint Investment Plans targeted Yes-in all areas, Yes-in most areas, Yes-in some areas, No, Don't Know
specific support on people who have had a stroke and/or their carers?
IN CONFIDENCE 6 1/24/2011
6 Carer support - Social Care
Are the following available to carers living in the area? Which are time-limited (e.g. only available for 6 months after stroke)? Which are open-access?
Available? Time-limited? Open access
Yes-in all areas, No of months Yes-in all areas,
Yes-in most areas, Yes-in most areas,
Yes-in some areas, Yes-in some areas,
No, Don't Know No, Don't Know
a) short breaks (with skilled replacement care)
b) drop-in centre
c) specific services for children in caring roles
d) specific services for parents of children who have had a stroke
e) support for carers to stay in, or return to, work
f) benefits and financial advice
g) telephone help/advice line
h) if there is a helpline, when is it available Office hours/extended hours/24/7
7 Involvement of people who have had a stroke and carers
Which methods were used during 2009/10 to involve the groups listed below in
planning/commissioning/monitoring social and community support? Specifically, Carers of
Service users people who people who
in general have had a Carers in have had a
stroke general stroke
a) Surveys (or other 'quantitative' methods) Yes, No,
b) Focus groups (or other 'qualitative' methods) Don’t Know
Are these groups involved:
c) in commissioning decisions
d) in service monitoring
Has specific efforts been made to reach:
e) people with specific communications needs Yes, No - but plans, No,
f) people living on their own Don’t Know
g) people living in areas of economic deprivation
h) people in care homes
i) people whose first language is not English
j) people with visual impairments
8 Implementation of the National Stroke Strategy
How has the earmarked Department of Health funding provided to councils to support the Stroke Strategy been used?
a) Family and carer support service Estimate %
b) Stroke coordinator
c) Purchase extra social care
d) Support community/voluntary groups
e) Stroke related training
g) Other (describe)
h) Has the impact of this spending been evaluated? Yes- fully/In part/No
i) If yes/in part - what was the result of this evaluation? Major success/some success/little impact/no impact/inconclusive
j) Are plans in place to maintain these services after the grant has finished? Yes- fully/In part/No
k) Are social services represented in the local Stoke Improvement Programme Now/In future/No
network (or are there plans for such representation in future)?
l) How many strategic meetings of the local Stoke Improvement Programme
network did a representative from this social services department attend during
m) There are a number of aspects of services for people who have had a stroke and their carers which are difficult to measure, such as
improvements in services for particular groups or improved integration between services, which we would like to include in the national report of
this review. If you have an example of an interesting service improvement which you would like to share please describe it briefly below.
IN CONFIDENCE 7 1/24/2011