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Helen Harris BSc PhD FFPH, January 2013
1
Delivering welfare rights advice in the acute
hospital setting
– reducing inequalities with joined-up multi-agency services to achieve
improved health outcomes, and a practical framework to evaluate them.
Correspondence to: Dr Helen E. Harris BSc PhD FFPH
Immunisation, Hepatitis and Blood Safety Department,
Health Protection Services, Health Protection Agency,
61 Colindale Avenue, London, NW9 5EQ, UK.
Telephone: +44(0) 20 8327 7676
Email: helen.harris@hpa.org.uk
Running head: Welfare rights advice in the acute hospital setting
Key words: Welfare Rights Advice, Citizens Advice Bureau, Healthcare, Inequalities,
Health and Wellbeing, Evaluation framework
Word count:
Helen Harris BSc PhD FFPH, January 2013
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CONTENTS CONTENTS ................................................................................................................................. 2
EXECUTIVE SUMMARY ............................................................................................................... 5
INTRODUCTION ....................................................................................................................... 10
METHODS ................................................................................................................................ 11
Designing the service evaluation framework ...................................................................... 11
Review of the literature ................................................................................................... 11
Stakeholder interviews .................................................................................................... 12
Defining outcomes, indicators and data collection tools for the evaluation framework 12
Implementation of the evaluation framework .................................................................... 13
Client pre- and post-advice questionnaires..................................................................... 13
Service referral forms and second tier advice ................................................................. 13
Staff questionnaire .......................................................................................................... 13
Staff focus group ............................................................................................................. 14
The CAB CASE database ................................................................................................... 14
Ethics and agreements ........................................................................................................ 14
RESULTS ................................................................................................................................... 15
The evaluation design .......................................................................................................... 15
Sample ................................................................................................................................. 15
Outcomes and Indicators .................................................................................................... 16
Profile and background of service users ......................................................................... 16
Activity and access ........................................................................................................... 17
Service development and integration ............................................................................. 18
Client experience ............................................................................................................. 19
Uptake of benefits and extra financial resources obtained ............................................ 20
Improvements on health and wellbeing ......................................................................... 20
Economic ......................................................................................................................... 21
DISCUSSION ............................................................................................................................. 22
Helen Harris BSc PhD FFPH, January 2013
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Sample ................................................................................................................................. 22
Outcomes and Indicators .................................................................................................... 23
Profile and background of service users ......................................................................... 23
Activity, access ................................................................................................................. 25
Service development and integration ............................................................................. 26
Client experience ............................................................................................................. 27
Uptake of benefits and extra financial resources obtained ............................................ 27
Improvements in health and wellbeing ........................................................................... 28
Economic ......................................................................................................................... 29
The evaluation framework design and utility ...................................................................... 31
CONCLUSIONS ......................................................................................................................... 33
REFERENCES ............................................................................................................................ 35
ACKNOWLEDGEMENTS ........................................................................................................... 40
TABLES ..................................................................................................................................... 41
Table 1. Summary of client responses to service accessibility statements on post-advice
questionnaire (n=110) (appendix 2) .................................................................................... 41
Table 2. What GOSH staff responding to the email questionnaire (n= 68) (appendix 4)
would do if they felt that a patient, carer or family would benefit from some help with
welfare rights or benefits advice... ...................................................................................... 41
Table 3. Responses by GOSH staff responding to the email questionnaire (appendix 4)
assessing the broader visibility and understanding of the service within the hospital (n=
68) ........................................................................................................................................ 42
Table 4. A selection of direct quotations from the post-advice questionnaires (appendix 2)
illustrating the value of the GOSH CAB service to some clients. ......................................... 42
Table 5. Reported utility of additional money from those clients reporting extra income or
reduced level of debt (n=110) on their post-advice questionnaires (appendix 2). ............. 43
Table 6. Summary of client responses to the question on post-advice questionnaire
(appendix 2): “Following contact with the GOSH Cab service, did you....” (n=110) ........... 43
Table 7. Reported time saved by GOSH staff (appendix 3) as a result of referring families to
the GOSH CAB service. ........................................................................................................ 44
Table 8. Areas that GOSH staff received second tier advice in, from the CAB Advisor....... 44
Helen Harris BSc PhD FFPH, January 2013
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FIGURES ................................................................................................................................... 45
Figure 1. Age distribution of the 745 GOSH CAB clients seen between October 2008 and
October 2011 (source: CAB CASE database) ....................................................................... 45
Figure 2. Ethnicity of the 745 GOSH CAB clients seen between October 2008 and October
2011 (source: CAB CASE database) ..................................................................................... 45
Figure 3. Income profile of the 745 GOSH CAB clients seen between October 2008 and
October 2011 (source: CAB CASE database) ....................................................................... 46
Figure 4. Occupation type of the 745 GOSH CAB clients seen between October 2008 and
October 2011 (source: CAB CASE database) ...................................................................... 46
Figure 5. Speciality caring for the children of parents/carers attending the GOSH CAB
service (n =493) (appendix 3). ............................................................................................. 47
Appendices .............................................................................................................................. 48
Appendix 1. Client pre-advice questionnaire ...................................................................... 49
Citizen’s Advice Bureau Service ....................................................................................... 49
Pre-advice client questionnaire ....................................................................................... 49
Appendix 2. Client post-advice questionnaire..................................................................... 50
Citizen’s Advice Bureau Service ....................................................................................... 50
Post-advice client questionnaire ..................................................................................... 50
Appendix 3. GOSH CAB Service referral form ..................................................................... 54
Appendix 4. Email questionnaire to wider hospital staff .................................................... 55
Appendix 5: Focus group discussion questions to help assess service activity, integration
and access. ........................................................................................................................... 57
Appendix 6: GOSH CAB Service Evaluation Framework, showing outcomes and indicators
............................................................................................................................................. 58
Helen Harris BSc PhD FFPH, January 2013
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EXECUTIVE SUMMARY
Background
To address the overwhelming evidence linking poverty to poor health and wellbeing, Great
Ormond Street Hospital (GOSH) established an on-site welfare rights advice service for
parents and carers of children attending the hospital.
A practical service evaluation framework is presented here to enable the impact of welfare
rights advice services in the acute hospital setting to be assessed.
Evaluation findings after the first three years of service are reported to illustrate how this
joined-up multi-agency service at GOSH helped to achieve improved health outcomes and
reduce inequalities.
Methods
Stakeholder interviews and a review of the literature were undertaken to define the
outcomes of interest; these were distilled into an evaluation framework with a variety of
outcome indicators. Indicators were identified that would help demonstrate whether
outcomes had been achieved and hence allow project progress to be monitored.
The source of existing data and the most appropriate vehicles for gathering new data were
prescribed, along with a timetable for reviewing progress and making any mid-term
modifications to the framework that might be necessary.
SPSS was used to undertake descriptive univariable statistical analyses of data collected
during the first 3 years of service.
Results
The evaluation framework
Seven outcome areas of importance in evaluating the success of the GOSH CAB service were
identified: the profile and background of service users; activity and access; service
Helen Harris BSc PhD FFPH, January 2013
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development and integration; client experience; uptake of benefits and extra financial
resources obtained; improvements in health and wellbeing; and economic outcomes.
Tools designed or identified to gather outcome indicator data included: a new local database
to store data as they were collected; the existing Citizen Advice Bureau (CAB) CASE database;
new pre-advice, post-advice and service referral forms; a staff email questionnaire; a staff
focus group; and quarterly CAB manager case reports to the GOSH CAB steering group.
Sample
CAB CASE data showed that between October 2008 and October 2011, 745 clients had been
seen. Between September 2008 and September 2011 (a roughly congruent period), 493
referral forms had been received by the GOSH CAB service and 467 pre-advice
questionnaires. One hundred and ten post-advice questionnaires were received from the
464 clients whose cases had been closed by September 2011; 65 of these had a matching
pre-advice questionnaire.
Outcomes
(i) Profile and background of service users: Outcome data suggest that the service was
accessible to individuals who are hard to reach. More than 40% of the clients seen
(313/736) were resident in one of the top 20 Local Authorities with the highest
levels of child poverty in England. Indices of Multiple Deprivation showed that 36%
(262/736) of the clients seen by the service came from the most deprived 20% of
Lower Super Output Areas in England. Compared to the GOSH population, the
service saw a disproportionately high number of Black and Asian clients, which
together represented 44% of all clients seen (326/735). Forty five percent of the
clients (317/698) were either permanently sick or disabled themselves or had
fulltime caring responsibilities for the elderly or children; a further 8% were
unemployed (53/698). Among the 110 individuals who completed a post-advice
questionnaire, 80 of the 101 (79%) who responded to this question reported that
this was the first time they had sought or received independent welfare rights
advice. The specialities/departments most represented by families attending the
GOSH CAB service were: outpatients; haematology/oncology and intensive care
which together represented nearly 60% of all families seen (239/407).
Helen Harris BSc PhD FFPH, January 2013
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(ii) Activity and access: Many of the 745 GOSH CAB clients seen between October 2008
and October 2011 presented with multiple issues and together brought 3469 issues
to the service during this period; the overwhelming majority of these were related
to benefits (n=2394) or debt (n=489); housing (n=217) and employment (n=153)
were also issues. Around 90% of the clients found the service easy to access and 87%
found the Advisor easy to get hold of when they needed him. Overall the opening
hours generally suited clients (87%) but some would have also liked the service to be
available everyday (62%), in the evenings (42%) or at weekends (48%). This was
echoed by staff during the focus group who also felt that some out-of-hours
provision would be highly desirable. Staff were supportive of the on-site service at
GOSH and felt that it served the needs of families, carers, and staff.
(iii) Financial Gains: Between October 2008 and October 2011, financial gains in excess
of £1.2 million were achieved for 35% (262/745) of the GOSH CAB clients,
approximating to a mean gain of £4,686 per benefitting client. In addition to this, the
service helped clients to manage debts approaching half a million pounds (£462,206)
over the study period. For many, additional monies were used to cover basics like:
food, essential items for the home, transport, care needs, household bills, and
housing.
(iv) Health and Wellbeing: Following contact with the GOSH CAB service, 73% of clients
reported feeling less worried or stressed, 67% reported feeling better in themselves,
and 54% reported an improved quality of life. A further 62% reported feeling better
able to cope with their day-to-day living, 73% felt that their problems/situations had
improved as a result of the advice that they had received, and 83% felt that they had
received useful, practical advice that helped them to manage things better. For
those clients completing both pre- and post-advice questionnaires, emotional
wellbeing was seen to improve significantly from a mean score of 47.8 (SD 21.2)
before receiving welfare advice, to a mean score of 61.3 (22.6) at close of case
(t=3.3, P=0.001). Significant improvements in role limitations due to emotional
problems were also observed, with mean scores rising from 35.1 (SD 40.9) before
receiving welfare advice to 62.2 (SD 44.2) at the close of case (t=3.2, P=0.002).
(v) Economic: The cost of staff time saved by the GOSH CAB service was estimated to be
£8690 per annum. During the period of evaluation, 5 cases were successfully
resolved by the GOSH CAB advisor that allowed discharge from hospital. In all 5
cases the CAB Advisor was able to help clients obtain accommodation that was
Helen Harris BSc PhD FFPH, January 2013
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suitable for their child’s complex needs, using homelessness and Human Rights
legislation as well as making applications under the Housing Act, petitions for
bankruptcy, and helping families to reschedule their debts and access the benefits
that they were entitled too.
(vi) Service development and integration: GOSH staff responding to the email
questionnaire who felt that a patient, carer or family would benefit from some help
with welfare rights or benefits advice, would mostly (94%) refer to the CAB directly
(13%) or to a group who serve as a referral gateway to the GOSH CAB service (81%).
There was some confusion and perception of an overlap between the services
provided by the CAB and those provided by PALS, Family support workers and Social
Work. Awareness of the service within the hospital was varied, and knowledge of
the service generally came via word of mouth. Awareness of the service outside
referral gateway groups was low. The focus group felt there was a need to enhance
the visibility of the service within the hospital, which would only be achievable if the
service was extended (the current Advisor was working at capacity).
(vii) Client experience: Levels of client satisfaction were extremely high; 91% of clients
completing the post-advice questionnaire (100/110) were either very (n=78) or fairly
satisfied (n=22) with the level of service they received. A similar number of clients
(103/110; 94%) felt that that the information and advice that they were given was
either very (n=76) or fairly (n=27) easy to understand. The overwhelming majority of
clients (96%; 106/110) felt the CAB Advisor to be very (n=83) or fairly (n=23)
informative and 75% (83/110) felt that the Advisor kept them up to date with
progress: 56 very well and 27 fairly well. Ninety five percent (104/110) of clients felt
that the Advisor listened to what they had to say either very (n=82) or fairly (n=22)
well and treated them fairly at all times (104/110; 95%). Similar numbers of clients
(92%; 101/110) were either certain (n=80) or likely (n=21) to recommend the service
to others needing legal help or advice and 89% (98/110) found the result of their
case to be either the same (n=29) or better (n=69) than the Advisor had predicted. A
mean rating of 8.5 (SD 2.1; Mode 10; Median 9) was achieved when clients (102/110
respondents) rated the value of the service to them on a scale of 1 to 10.
Helen Harris BSc PhD FFPH, January 2013
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Conclusions
Overall, the evaluation framework was well received and provided data that enabled the
success of the service to be measured. It provided data to inform service development and
helped to justify the existence of the service in challenging economic times.
The practical value of the increased incomes and reduced levels of debt that were achieved
by many of the parents and carers using the GOSH CAB service cannot be underestimated;
evidence from this study suggested that a positive effect on client’s mental health and
wellbeing can also be achieved. Welfare rights advice for families of children attending
GOSH, particularly its potential contribution towards improving psychological status in those
benefiting from increased incomes, has considerable potential to contribute to a long term
reduction in ill health associated with anxiety and stress.
GOSH recognises the need to extend their services beyond the medical, to meet the needs of
the whole child in the context of the social setting that they find themselves. By joining up
services, GOSH has helped to address the wider determinants of health to improve the
health and wellbeing of families of children at GOSH, and has addressed inequalities by
helping to improve the health of the poorest fastest. Such services will be increasingly
important as the impact of welfare reform in the current challenging economic climate takes
effect, often with disproportionate impact on the families of disabled children.
It is hoped that this evaluation framework can be used in other healthcare settings to help
establish and sustain welfare rights advice services in the NHS.
Helen Harris BSc PhD FFPH, January 2013
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INTRODUCTION
Few would dispute the overwhelming evidence linking poverty to poor health and wellbeing
(Whitehead, 1992; Acheson, 1998; Marmot Review, 2010), and as such Great Ormond Street
Hospital (GOSH) recognises the need to extend their services beyond the medical, to meet
the needs of the whole child in the context of the social setting that they find themselves.
This is particularly salient for GOSH, since families with disabled children are
disproportionately likely to be living in poverty (Every Disabled Child Matters Campaign
(EDCM), 2007; Equality and Human Rights Commission (EHRC), 2011). Recent analyses of
material deprivation and living standards in Britain (EHRC, 2011) shows that material wealth
has continued to grow, alongside a persistent gap between richest and poorest, but that
income poverty remains persistent for certain groups, including women with children, ethnic
minority groups and families with disabled members; over 1 in 4 families with disabled
people in Britain are living in poverty, 28% of those with a disabled child and 38% of those
with both a disabled child and adult (EHRC, 2011).
Child poverty persists in the UK, despite past Government commitments to eradicate it
within twenty years (HM Treasury, 2008; Child Poverty Action Group, 2011), and one of the
principle reasons why governments fail to meet their targets is that reduction in child
poverty assumes that families receive all the benefits to which they are entitled. In practice,
many entitled families do not claim benefits (DWP, 2007), and this means that children in
these households have not benefited from the main anti-poverty policies. Families of sick or
disabled children often have specific and multiple barriers arising from the complexity of
their situation that make accessing benefits and welfare rights advice difficult.
It is also recognised that childhood disability or ill health can frequently be a ‘trigger event’
for poverty as a result of additional costs, family break-up and unemployment that can
follow the birth or diagnosis of a seriously ill or disabled child (EDCM Campaign, 2007). Early
help dealing with people’s debt and welfare problems can be an effective way of preventing
and mitigating the associated mental and physical health problems that often follow
(London Health Forum, 2009) and can help to stabilise families quickly.
Feedback from practitioners at GOSH also suggested that there was an unmet need for a
welfare rights advice service in the hospital. Following discussions by the Trust’s Engagement
Strategy Group and a financial boost from a charitable funder, a pilot Citizen’s Advice Bureau
Helen Harris BSc PhD FFPH, January 2013
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(CAB) service was established at GOSH for a 3-year period from 2008. This on-site CAB
service provides timely face-to-face advice to families and carers of children at GOSH.
Referral to the service is via a managed gateway. The service is delivered by Camden CAB, to
a specification agreed with GOSH, and a steering group guides the development of the
service.
To enable judgements to be made regarding the success of the service, an evaluation
framework was developed which set down, from the outset, how the success of the service
would be measured.
The aim of this paper is to describe the development of the framework for evaluating the
new welfare rights advice service at GOSH, to report evaluation findings after the first 3
years of service, and to develop the framework for use in other healthcare settings to help
establish and sustain welfare rights advice services in the NHS.
METHODS
Designing the service evaluation framework
The CDC framework for Public Health Program Evaluation (Milstein & Wetterhall, 1999)
suggests a 6-step process for effective, systematic programme evaluation, and this
framework was used as a starting point for tailoring a bespoke evaluation framework for the
GOSH CAB service.
Review of the literature
A review of the literature was undertaken in 2008 to identify previous studies investigating
the health, social and financial impacts of welfare rights advice delivered in health care
settings. Because substantial amounts of grey literature exist in this area, both published
and unpublished articles were reviewed using electronic databases (e.g. Medline and the
Health Management Information Consortium) and websites accessed via commercial
internet search engines (e.g. http://www.google.com). Reference lists of relevant studies,
particularly relevant review studies, were also scanned to identify other studies of interest,
Helen Harris BSc PhD FFPH, January 2013
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along with websites of specific organisations that sponsor and conduct social policy
research, including the: Joseph Rowntree Foundation, Home Office, HM Treasury,
Department of Work and Pensions, National Audit Office, Department of Health, Nuffield
Trust, King’s Fund, and Institute of Fiscal Studies. To supplement this review, advice was
sought from Public Health professionals with practical experience of similar initiatives in the
field.
Stakeholder interviews
To help define the outcomes of importance for the evaluation framework, key stakeholders
were interviewed. These included GOSH: Strategic and Operational Leads, Board Members,
Patient Advice and Liaison Service (PALS) staff, Social workers, Family Support Workers
(FSWs), Chaplaincy staff, Research Nurses, Clinical Site Practitioners, and Senior Ward Staff.
Personnel from the Camden CAB Service and the private funder were also interviewed to
assess their expectations of the service.
Defining outcomes, indicators and data collection tools for the evaluation framework
Information from stakeholder interviews and the literature review were used to define the
outcomes of interest, and these were distilled into a framework with a variety of outcome
indicators. Indicators were identified that would help demonstrate whether outcomes had
been achieved and hence allow project progress to be monitored relative to the objectives
that had been set at the outset. The number of indicators selected was optimised since too
many would detract from the evaluation’s goals and too few would fail to track the
implementation and effects of the program. Qualitative and quantitative indicators were
identified to suit the different outcomes of interest, the information available, and the
planned data uses.
The source of existing data and the most appropriate vehicles for gathering new data were
prescribed, along with a timetable for reviewing progress and making any mid-term
modifications to the framework that might be necessary. Where different perspectives were
important, more than one source was used to gather evidence for a particular outcome.
Consideration was given to maximising data quality to ensure that data were reliable, valid
and fit for purpose. Likewise, the quantity of information gathered was balanced against the
Helen Harris BSc PhD FFPH, January 2013
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burden placed on respondents to supply it. At each stage of the process local logistics and
culture were taken into account to ensure that the evaluation framework was practical.
Implementation of the evaluation framework
Client pre- and post-advice questionnaires
The GOSH CAB service opened in June 2008 and the service evaluation framework was
introduced 3 months later in September 2008 once the service was fully up and running. All
clients using the service between September 2008 and September 2011 (the 3 year study
period) were invited to complete a pre-advice questionnaire (see appendix 1) and those
individuals whose cases were closed were also invited to complete a 20-item post advice
questionnaire (see appendix 2) even if their referral pre-dated the study period (i.e. all cases
closed between June 2008 and September 2011). Individuals who did not return their post-
advice questionnaires were sent a postal reminder after 4 weeks of non-response.
Service referral forms and second tier advice
All staff referring families to the GOSH CAB service were asked to complete a service referral
form (see appendix 3). Data on second tier advice was recorded in the CAB GOSH database,
by the CAB Manager, from December 2008 until September 2011.
Staff questionnaire
PALS, Social Work and Family Support Workers had a good understanding of the CAB service
and the service operational policy stated that all referrals to the service should come via
these three gateway groups in the first instance- a managed gateway referral system. To
assess the broader visibility and understanding of the service within the hospital, a short
questionnaire (appendix 4) was emailed to wider hospital staff. The questionnaire was
emailed out to the following groups: nurses (including clinical nurse specialists, sisters,
matrons, charge nurses, and nurse consultants), clinical unit managers, clinical site
practitioners, speciality leads, practice educators and psychologists.
Helen Harris BSc PhD FFPH, January 2013
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Staff focus group
Activity and access, as well as the success of service integration, were assessed via a focus
group of GOSH staff. The focus group consisted of 12 GOSH staff, a facilitator, and co-
facilitator to take notes. Staff who responded to the email questionnaire, as well others
identified by steering group members as having contact with families, were invited to
attend. Discussion was limited to 1.5 hours over lunch, and the group addressed 6 key areas
relating to GOSH CAB service activity, access, and service integration (appendix 5). The 6 key
areas were informed by preliminary analyses of data from client post-advice and staff email
questionnaires with particular consideration given to potential inequalities in service
provision and access that might exist (analyses not reported here).
Focus group members were invited to participate and sent a follow-up invitation with a
proposed agenda, session time and a list of questions that the group would discuss. The day
before the session, each member was called to remind them to attend. The facilitator kept
discussions focused, avoided leading questions, helped to maintain the momentum of
discussions and tried to ensure even participation and get closure on questions.
The CAB CASE database
Information on: the profile and background of services; service activity; uptake of benefits
and extra financial resources obtained was extracted from the CAB Service’s national CASE
database (appendix 6) for those clients using the GOSH CAB service between October 2008
and October 2011 (Q3 2008/09-Q3 2011/12).
Ethics and agreements
A section summarising procedures and clarifying the roles and responsibilities of those who
would execute the evaluation, was drafted and included in the ‘CAB at GOSH Operational
Policy’. The framework was referred to the Chair of the GOSH Research Ethics Committee
and was confirmed to not require further formal ethical review as it was considered to be
part of routine service evaluation.
Helen Harris BSc PhD FFPH, January 2013
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RESULTS
The evaluation design
Interviews with stakeholders, and a comprehensive review of the literature, revealed 7
outcome areas of importance in evaluating the success of the GOSH CAB service: (i) profile
and background of service users, (ii) activity and access, (iii) service development and
integration, (iv) client experience, (v) uptake of benefits and extra financial resources
obtained, (vi) improvements in health and wellbeing, and (vii) economic outcomes.
Outcome indicators were selected to measure the outcomes of interest (see below and
appendix 6) and a variety of tools were designed or identified to gather the necessary
outcome data (appendices 1-5); these included a new local database to store data as they
were collected, the existing national CAB CASE database, a new service referral form
(appendix 3), as well as 3 new questionnaires: client pre-advice (appendix 1), client post-
advice (appendix 2), and staff (appendix 4) questionnaires. A focus group of key GOSH staff
and quarterly CAB manager case reports to the GOSH CAB steering group were also key
components of the evaluation framework.
Sample
Between October 2008 and October 2011, the CAB CASE database showed that 745 clients
had been seen by the GOSH CAB Service. Between September 2008 and September 2011
(the 3 year study period), 493 referral forms had been received by the GOSH CAB service
(approximating two thirds of the clients seen) and 467 pre-advice questionnaires. One
hundred and ten post-advice questionnaires were received from the 464 clients whose cases
had been closed by September 2011 and who had been sent a post-advice questionnaire
and subsequent reminder by the CAB Advisor (24% response rate). A matching pre-advice
questionnaire was available for 65 of the 110 clients who had sent in a post-advice
questionnaire, representing 14% of all cases closed (65/464).
Helen Harris BSc PhD FFPH, January 2013
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Over 80 individuals were invited to attend the focus group. Of these, 25 accepted and 12
were able to attend on the day. These 12 individuals were employed in a variety of roles
within GOSH, including administrative, clinical and service roles.
Sixty eight staff members responded to the emailed questionnaire; 18 (26%) clinical nurse
specialists, 14 (21%) sisters/matrons, 6 (9%) paediatric/neonatal intensive care staff, 6 (9%)
psychology staff and 24 (35%) others.
Outcomes and Indicators
Profile and background of service users
(i) From the CAB CASE database
The age distribution of the 745 GOSH CAB clients seen between October 2008 and October
2011 is shown in figure 1; more than 80% of the clients seen were in the age range 25-50
years (569/685). Clients were predominantly female (66%; 488/744), around half were of
white ethnic origin (51%; 375/735) although many other ethnic groups were represented
(figure 2); roughly equal numbers of Black and Asian clients together represented 44% of all
clients seen (326/735; see figure 2). Nearly 40% of the clients (261/708; 37%) were either
divorced (n=14), separated (n=54), widowed (n=7) or single (n=186); the remainder were
either married, cohabiting or in civil partnerships (447/708; 63%). The income profile of
clients is summarised in figure 3.
When occupations were examined, 45% of the GOSH CAB clients (317/698) were either
permanently sick or disabled themselves (n=19) or had fulltime caring responsibilities for the
elderly (n=122) or children (n=176); a further 8% were unemployed (53/698; see figure 4).
The majority of clients had more than one dependent child (62%; 460/745); 30% had three
or more dependent children (227/745); 2% (n=13) were caring for at least one dependent
adult.
More than 40% of the clients seen (313/736; 43%) were resident in one of the top 20 Local
Authorities (LAs) with the highest levels of child poverty across England (LA’s with 34%-57%
of all children in that LA living in poverty, 2010; Child Poverty Action Group, 2011). Indices of
Multiple Deprivation (IMD scores; Department for Communities and Local Government,
Helen Harris BSc PhD FFPH, January 2013
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2011) generated from client postcodes showed that more than a third (262/736; 36%) of the
clients seen by the GOSH CAB service came from the most deprived 20% of Lower Super
Output Areas (LSOAs) in England.
(ii) From the service referral form
Half of all referrals came via the Social Work gateway (246/493). Other referrals came via
PALS (21%; 104/493), FSWs (16%; 79/493), or other routes (13%; 62/493). For some, the
referral route was not recorded (0.4%; 2/493).
Reasons given for referral were single or multiple, including advice on benefit entitlement
(n=336), with some of these 336 referrals expressly mentioning Disability Living Allowance
(DLA; n=123) and carers allowance (n=18). Other reasons given included issues around
housing (n=82), employment (n=65), and immigration (n=32), as well as requests for help
with benefit and other appeals (n=34), general financial (n=47), debt and mortgage (n=23),
and other (n=36) advice.
The 493 CAB clients were parents or carers of children being cared for by a variety of
different specialities within GOSH (see figure 5). The specialities most represented amongst
families attending the GOSH CAB service were outpatients (n=90), haematology/oncology
(n=72) and intensive care (n=77) which together represented nearly 60% of all families seen
(239/407).
(iii) From the post-advice questionnaire
Among the 110 individuals who completed a post-advice questionnaire, 80 of the 101 (79%)
who responded to this question reported that this was the first time they had sought or
received independent welfare rights advice.
Activity and access
(i) From the CAB CASE database
Many of the 745 GOSH CAB clients seen between October 2008 and October 2011 presented
with multiple issues and together they brought more than 3400 issues to the service during
this period (n=3469); the overwhelming majority of these were related to benefits (n=2394)
or debt (n=489); housing (n=217) and employment (n=153) were also often issues.
Helen Harris BSc PhD FFPH, January 2013
18
(ii) From the post-advice questionnaire
Around 90% of the clients found the service easy to access in the first instance, and also easy
to access after their first contact (see table 1). Similar numbers (87%) found the advisor easy
to get hold of when they needed him (see table 1). Eighty seven percent of respondents
agreed that the opening hours generally suited them, but some clients would have liked the
service to be available everyday (62%), in the evenings (42%) and at weekends (48%; see
table 1).
(iii) From GOSH staff focus group
Staff were aware of the service that CAB offered, and were familiar with the CAB brand.
They knew that the CAB gave advice and assistance regarding: debt, employment disputes,
holiday complaints, housing, and benefits. Staff thought that the service was useful in a
hospital environment to serve the needs of families, carers, and staff.
Half of the group knew that the service was available at GOSH; around 10% were aware of
the physical location of the CAB within the hospital.
It was generally agreed that families would probably be referred to Social Services & FSWs
first, and that these groups would, in turn, refer families to CAB if appropriate. It was felt
that for complex long stay families, a referral system via Social Services was preferred. In
particular, some felt that direct referral of these families might lead GOSH Social Workers to
miss a child in need. For less complex out-patient situations, direct referrals to CAB were felt
to be acceptable and appropriate.
Some out-of-hours provision was felt to be highly desirable by staff, even if it was only an
hour or two once or twice a week; 7-8 some evenings or Saturday/Sunday mornings were
suggested. Staff felt that parents were often occupied with clinical matters during the day
and that many would find it difficult to leave the bedside between nine and five.
Service development and integration
(i) From email questionnaire to GOSH staff
If respondents felt that a patient, carer or family would benefit from some help with welfare
rights or benefits advice, most (94%) would either refer to a CAB directly (13%) or to a group
who serve as a referral gateway to the GOSH CAB service (81%; table 2). Around 40% of
Helen Harris BSc PhD FFPH, January 2013
19
clinical nurse specialists/sisters and matrons responding were aware of the GOSH CAB; other
responding groups seemed less aware (table 3). Of those respondents who reported
knowing that GOSH had an in-house CAB service (17/63; 27%), nearly half reported knowing
what sort of service they provided, 40% reported knowing where the service was located,
but around two thirds did not know how to refer individuals to the service (table 3).
(ii) From GOSH staff focus group
There was some confusion and perception of an overlap between the services provided by
the CAB and those provided by: PALS, FSWs and Social Work. Group members were not
always clear who provided which services.
Awareness of the service within the hospital was varied. Knowledge of the service generally
came via word of mouth. Awareness of the service outside referral gateway groups was low.
The group felt that there was a need to enhance the visibility of the service within the
hospital; advertising on washroom panels or information sheets around the hospital were
both suggested.
The group were generally not keen to pass advice from the CAB advisor to families
themselves, due to pressures of time.
Client experience
(i) From the post-advice questionnaire
Ninety one percent of clients (100/110) were either very (n=78) or fairly satisfied (n=22) with
the level of service they received. A similar number of clients (103/110; 94%) felt that that
the information and advice that they were given was either very (n=76) or fairly (n=27) easy
to understand. The overwhelming majority of clients (96%; 106/110) felt the CAB Advisor to
be very (n=83) or fairly (n=23) informative and 75% (83/110) felt that the Advisor kept them
up to date with progress: 56 very well and 27 fairly well. Ninety five percent (104/110) of
clients felt that the Advisor listened to what they had to say either very (n=82) or fairly
(n=22) well and treated them fairly at all times (104/110; 95%). Similar numbers of clients
(92%; 101/110) were either certain (n=80) or likely (n=21) to recommend the service to
others needing legal help or advice and 89% (98/110) found the result of their case to be
either the same (n=29) or better (n=69) than the Advisor had predicted. General comments
made by several of the clients suggested that the service was invaluable for many families
Helen Harris BSc PhD FFPH, January 2013
20
(see table 4). A mean rating of 8.5 (SD 2.1; Mode 10; Median 9) was achieved when clients
(102/110 respondents) rated the value of the service to them on a scale of 1 to 10.
Uptake of benefits and extra financial resources obtained
(i) From the CAB CASE database
Between October 2008 and October 2011, financial gains in excess of £1.2 million were
achieved for 35% (262/745) of the GOSH CAB clients (£1,227,717), including £140,189 of
written-off debt (n=19 clients), £1030 in charitable payments (n=2 clients), £235,532 in one-
off benefit or tax credit payments (n=90 clients), and ongoing annual benefit or tax credit
payments of £832,922 (n=142). In total, this approximates to a mean gain of £4,686 per
benefitting client. In addition to this, the service helped clients to manage debts approaching
half a million pounds (£462,206) over the study period.
(ii) From the post-advice questionnaire
In total, 64% (67/105) reported that the GOSH CAB service had helped them to obtain extra
income and 28% (25/89) reported that the service had helped them to reduce their level of
debt. For many, additional monies were used to cover basics like: food, essential items for
the home, transport, care needs, household bills, and housing (see table 5).
Improvements on health and wellbeing
(i) From the pre- and post-advice questionnaire
Following contact with the GOSH CAB service, 73% (69/95) of clients reported feeling less
worried or stressed, 67% (62/92) reported feeling better in themselves, and 54% (51/94)
reported an improved quality of life (see table 6). A further 62% (57/92) reported feeling
better able to cope with their day-to-day living, 73% (69/94) felt that their
problems/situations had improved as a result of the advice that they had received, and 83%
(76/92) felt that they had received useful, practical advice that helped them to manage
things better (see table 6).
For those clients completing both pre- and post-advice questionnaires (n=65), emotional
wellbeing, as assessed by relevant items from the 36-Item Short Form Health Survey (SF-36;
Ware & Sherbourne, 1992), was seen to improve overall from a mean score of 47.8 (SD 21.2)
Helen Harris BSc PhD FFPH, January 2013
21
before receiving welfare advice, to a mean score of 61.3 (22.6) at close of case (t=3.3,
P=0.001). Of those cases with pre- and post-advice scores, 71% had improved scores for
emotional wellbeing by the close of their cases. Improvements in role limitations due to
emotional problems were also observed with mean scores rising from 35.1 (SD 40.9) before
receiving welfare advice, to 62.2 (SD 44.2) at the close of case (t=3.2, P=0.002). Of those
cases with pre- and post-advice scores, more than half (56%) had improved scores for role
limitations due to emotional problems by the close of their cases.
Economic
(i) From service referral form – time saved by GOSH staff
Three hundred and seventeen staff referring clients to the GOSH CAB Service reported that
they had saved time by passing these issues to the GOSH CAB service (79 reported not saving
time; 97 were not sure). The overall estimate of self-reported staff time saved over the 3
years of operation was 697 hours, or over 17 weeks of time (see table 7): 91 hours of PALs
time; 434 hours of SW; 2 hours of medical consultant; 21 hours of nursing; 100 hours of
FSW; 23 hours of care advisor; 11 hours of other healthcare professionals and 15 hours of
others’ time. Taking mean salaries for each of these groups, and assuming: (i) a 50 hour
working week for the medical consultant, (ii) a 37.5 hour working week for all other groups,
and (iii) that the unknown groups were conservatively salaried at the mid-point of Agenda
for Change Band 5, this equates to a saving of £17,245 over the study period, or
approximately £5750 per annum. If similar savings were experienced by the 252 individuals
who did not complete service referral forms, the cost of staff time saved by the GOSH CAB
service would be around £8690 per annum.
(ii) From the post-advice questionnaire – helping to deliver other services
In collaboration with the GOSH Information Manager, an information leaflet was produced
giving details of useful websites and resources relating to health and wellbeing, and the CAB
Advisor was asked to distribute this to all clients attending the service during the first 19
months of service. During this period, only 8% of clients (4/50) reported receiving the health
promotion information leaflet.
Helen Harris BSc PhD FFPH, January 2013
22
(iii) From GOSH staff focus group – helping to deliver other services
Following discussion, staff felt that, due to independence and lack of specialist expertise, the
CAB was not a suitable conduit for giving health promotion advice. The group did however
feel that it was GOSH’s responsibility to, at least, signpost to health promotion advice
because the service was located within a hospital.
(iv) From CAB manager reports – preventing unnecessary hospital stays
During the period of evaluation, 5 cases were successfully resolved by the GOSH CAB advisor
that allowed patients to be discharged from hospital. In all 5 cases the issue resolved related
to inappropriate accommodation preventing discharge home. In these cases the CAB Advisor
was able to help clients obtain accommodation that was suitable for their child’s complex
needs, using homelessness and Human Rights legislation as well as making applications
under the Housing Act, petitions for bankruptcy, and helping families to reschedule their
debts and access the benefits that they were entitled too.
(v) Second tier advice
Between November 2008 and November 2011, 231 instances of second tier advice were
given by the CAB Advisor to other GOSH staff members. This advice was given to Social
workers (151/231; 65%), FSWs (35/231; 15%), ward staff (8/231; 3%), PALS staff (7/231, 3%)
and others (30/231; 13%). Advice was given on a variety of issues and topics including
benefits, immigration, housing and employment (see table 8). Advice ranged from provision
of one-off technical detail to: attending a series of focus groups on transitional care involving
young people with disabilities, supporting others with complex case work, and providing
training and support to staff.
DISCUSSION
Sample
Between October 2008 and October 2011, the CAB CASE database showed that 745 clients
had been seen by the GOSH CAB Service, yet between September 2008 and September 2011
only 493 service referral forms had been received and entered into the GOSH CAB service
Helen Harris BSc PhD FFPH, January 2013
23
evaluation database. Although the above periods are not exactly congruent, this suggests
that service referral forms were completed for approximately two thirds of referrals. Nearly
all (95%) of the 493 clients completed pre-advice questionnaires. Pre-advice questionnaires
were handed out to clients on arrival by the receptionist for completion in clinic whilst
waiting to see the CAB Advisor. The high response rate to this questionnaire reflects the
effectiveness of this system. In contrast, the response rate to the post-advice questionnaire
only reached 24%. These questionnaires were issued, in batches, at close of case; postal
reminders were also sent. Despite reminders, the response rate remained low, albeit
anecdotally in line with those achieved by the Legal Service Commission in response to their
standard 10-item client feedback questionnaire (personal communication). Nevertheless, the
high rate of non-response may limit the general application of the findings reported here,
since those who responded to our post-advice questionnaire may differ in important ways
from those clients who failed to, or elected not to, respond.
The focus group was well attended by GOSH staff with a variety of roles within the hospital.
The theme was well defined and group members were able interact freely when discussing
the issues that were raised. Staff responded similarly well to the email questionnaire,
however, the lack of comprehensive denominator data limited the interpretation of these
data.
Outcomes and Indicators
Profile and background of service users
In order to monitor, tailor and develop the CAB service it was essential to gain some sense of
the client profile and the issues with which clients were presenting. Such information was
also key for assessing the effectiveness of the service in addressing inequalities.
The age distribution was consistent with parents of young children and the bias towards
women was likely to reflect the fact that women tend to be overrepresented in caring roles
(Young et al, 2006), especially in the care of children. Nationally women make-up around 54
percent of the CAB client population, therefore, it is also possible that this on-site service
was more accessible for women. Significant numbers of clients were from Black Minority
Ethnic (BME) populations, with Black and Asian clients together representing more than 40%
of all clients seen. When the ethnicity of GOSH CAB clients was compared to that of GOSH
Helen Harris BSc PhD FFPH, January 2013
24
admissions between 2003 and 2007, these BME groups were overrepresented in the GOSH
CAB population, providing some preliminary evidence that the service was particularly
effective at reaching these hard to reach groups (Proportion of each ethnic group in GOSH
CAB clients vs. GOSH admissions: Black 22% vs. 9%, and Asian 22% vs. 13% respectively).
Further evidence supporting accessibility of the service for hard to reach groups came from
the fact that more than 40% of the clients seen came from the Local Authorities with levels
of child poverty exceeding 33%, and more than 1 in 3 were resident in the most deprived
20% of LSOAs in England.
Having this service on-site was also likely to make it particularly accessible for the: nearly
40% of clients who were single, divorced, separated or widowed; the 45% of clients who
were either permanently sick or disabled themselves or who had fulltime caring
responsibilities; and the 62% of clients who had more than one dependent child at home.
These are all well described barriers to accessing welfare rights advice (Wiggan & Talbot,
2006) that have been overcome by providing a CAB service on-site to parents and carers of
sick children at GOSH.
At GOSH, the most common issues related to benefit entitlement and appeals, debt,
housing, employment, and immigration, as well as general financial and mortgage advice.
Families whose children become seriously ill or who give birth to children with significant
health problems can very quickly find themselves under financial and other pressures that
can result from being unable to work their usual hours or finding that their housing is no
longer suitable for the needs of their child. Half of all referrals came via the Social Work
gateway, with the remainder coming largely via PALS or FSWs. At GOSH, the CAB clients
were parents or carers of children being cared for by a variety of different specialities,
however, the families of children in intensive care and of those with a diagnosis of cancer
were most commonly seen. For other acute hospital trusts, the issues may be different, so
by identifying these client groups in the first year of service, the service can orientate itself
appropriately to the areas of most need.
Nearly 80% of the individuals who completed a post-advice questionnaire, reported that this
was the first time they had sought or received independent welfare rights advice. Several
studies suggest that CAB services located within healthcare settings reach individuals who
would not otherwise have accessed these services (Coppel at al., 1999; Moffat et al, 2004;
Sherratt et al, 2000). Data from this study support this, suggesting that many individuals
Helen Harris BSc PhD FFPH, January 2013
25
were benefiting from welfare rights advice at GOSH who may have otherwise slipped
through the net.
Activity, access
Levels of service activity often give insight into client awareness of the service, accessibility,
demand for, and capacity of, the service in its current format. Data on service activity were
useful for developing the service to better meet its objectives and the needs of the clients
for whom it was set-up. Low levels of activity can indicate low demand for a service, but can
equally be the result of low levels of awareness of the service, inappropriate referral
pathways, or inaccessibility in terms of location or hours of opening.
Accessibility of the service is often one of the key outcomes of importance to service users
(Jessop, 2006), and at GOSH around 90% of the clients completing the post-advice
questionnaire, found the service easy to access both in the first instance, and on subsequent
occasions. However, those individuals who found the service difficult or impossible to
access will inevitably be under-represented in studies of this type, so a cautious
interpretation of these findings should be taken.
However, for those who had connected with the service, similarly high levels of clients found
the advisor easy to get hold of when they needed him. While the vast majority (87%) of
respondents agreed that the opening hours generally suited them, there was some desire
for an out-of-hours service, with around half of respondents wishing there was some
provision at weekends. This was supported by staff attending the focus group who also felt
some out-of-hours provision to be highly desirable, even if it was only an hour or two once
or twice a week. The staff view, that parents were often occupied with clinical matters
during the day and might find it difficult to leave the bedside at these times, seemed to be
real. This may also be reflected in family’s preference for weekend over evening provision, if
bedside carers are more often joined by partners, friends and relatives at the weekend,
making accessing the service easier at weekends.
Only half of the focus group staff knew that a CAB service was available at GOSH, and even
fewer knew the physical location of the CAB within the hospital. However, it was generally
agreed that families requiring such a service would probably be referred to Social Services
and FSWs first, and then these groups would, in turn, refer families to the CAB if
appropriate. The focus group staff felt that for complex long stay families, this referral
system, via Social Services, was preferred. In particular, some felt that direct referrals to the
service might lead GOSH Social Workers to miss children in need. However, for less complex
Helen Harris BSc PhD FFPH, January 2013
26
out-patient situations, staff felt that direct referrals to the CAB would be acceptable and
appropriate.
Service development and integration
Information from the focus group showed that staff were familiar with the CAB brand and
were aware of the services that CAB offered. Notably staff thought that the service was
useful in a hospital environment and felt that it would help to serve the needs of families,
carers, and staff at GOSH. This is important as research broadly indicates that the most
successful welfare rights services tended to be where other health workers were fully
supportive of the initiatives and the welfare rights advisors became an integral part of the
health unit, with other health care staff aware of appropriate clients to refer on to them
(Wiggan and Talbot, 2006; Sherratt et al., 2000). Where advice workers were more
marginalised, due to location (lack of space) and/or lack of interest from healthcare staff, the
literature suggests their impact is less (Wiggan and Talbot, 2006).
GOSH patients, carers and families are extremely fortunate that GOSH has a large variety of
social welfare services on-site; Social Workers, PALS, the Chaplaincy and FSWs are just some
of key groups delivering such services. However, if the CAB service is to work optimally
within this environment, it is important that CAB areas of work are clearly defined and well
integrated with the work of other teams. Information from the focus group suggested that
there was some confusion and perception of an overlap between the services provided by
the CAB and those provided by other departments in the hospital, in particular with PALS,
Family Support Workers and Social Work. Further work will be required to ensure successful
integration of the CAB service to help maximise its efficiency and ensure it complements the
work of other teams working in this area so that GOSH staff working outside this immediate
area are clear about the service that is offered to patients, carers and their families.
Information from both the staff focus group and the staff questionnaire suggests that
awareness of the service within the hospital was varied, and generally came via word of
mouth; overall awareness of the service outside the referral gateway groups was low. This is
likely to be the result of a conscious decision to limit and control promotion of the service in
its early years while it became established. This was a wise decision, since the CAB Advisor
was working at capacity within three months of establishing the service at GOSH. Although
visibility of the service was low, the staff email questionnaires suggested that many families
in need of the service would be picked-up by the CAB anyway because staff would suggest
Helen Harris BSc PhD FFPH, January 2013
27
patients contact their local CAB directly or refer them to a group within the hospital who
serve as a referral gateway to the GOSH CAB service itself.
In the future, if service capacity can be expanded, it will be important to enhance the
visibility of the service within the hospital. Information from the staff email questionnaire
and focus group also suggest that further education of staff on what services the CAB can
provide, how to refer patients to it, and where it is located, would also be required.
Client experience
One of the essential core dimensions of system outcome is a measure of client satisfaction
with any new service, and this is usually best addressed via a direct survey (Jessop, 2006).
The national CAB service has a standard client feedback questionnaire that has been
endorsed by the legal services commission for this purpose, and this 10-item questionnaire
was integrated into the post-advice questionnaire used in the current study (appendix 2).
The overwhelming majority of responding clients were satisfied with the service provided by
the GOSH CAB and felt that that the information and advice they were given was easy to
understand. Clients felt that the CAB Advisor treated them fairly, listened to what they had
to say, was informative, kept them up to date with the progress of their case, and gave them
realistic expectations of its outcome.
In addition a supplementary free text question was included in the post-advice questionnaire
to gather patients’ general comments about the service as testimonials can be very powerful
in illustrating, in more human terms, what a difference the service made to individuals’ lives.
The overwhelmingly positive comments made by clients suggested that the service had been
invaluable to many families. To support this, respondents were also asked to rate the value
of the service to them, and the median rating of 9/10, and the fact that 92% of respondents
would recommend the service to others, is a testimony to the success of the GOSH CAB in
family’s eyes.
Uptake of benefits and extra financial resources obtained
There is now substantial evidence linking poverty to poor health and wellbeing (Whitehead,
1992; Acheson, 1998; Marmot, 2010). By lifting the income of families and carers of children
at GOSH either directly, by helping them to maximise their income via increased uptake-up
of benefits, or indirectly by reducing or managing their levels of debt, a potential positive
impact on their health and wellbeing should be possible.
Helen Harris BSc PhD FFPH, January 2013
28
CAB CASE data demonstrated financial gains exceeding £1.2 million for 35% of the GOSH CAB
clients, approximating to a mean gain of nearly £4,700 per benefitting client. In addition to
written-off debt and one-off payments, ongoing benefits and tax credits of more than
£830,000 per annum were achieved for GOSH CAB clients. Nearly 65% of respondents to the
post-advice questionnaire reported that the GOSH CAB service had helped them to obtain
extra income and nearly 30% reported that the service had helped them to reduce their level
of debt. Several studies designed to measure changes in individual health associated with
income increase that resulted from contact with benefits advice services within a health care
setting have shown that those who increased their income had significantly better outcomes
in mental health and emotional functioning when compared to those with no income
increase (see review: Abbott et al, 2006). Notwithstanding this association, the practical
value of securing additional resources and reducing financial hardship for those caring for a
sick child cannot be underestimated. For many in the present study, additional monies were
used to cover basics like: food, essential items for the home, transport, care needs,
household bills, and housing. Others have found that welfare advice delivered in healthcare
settings can lead to worthwhile financial benefits (Middleton et al., 1993; Coppel et al.,
1999; Greasley & Small, 2002; Borland & Owens, 2004, Hoskins et al, 2005; Adams et al.,
2006; Wiggan & Talbot, 2006), and qualitative studies investigating the impact of extra
resources from DLA on families with disabled children have found that extra resources can
positively affect families’ standard of living (Preston, 2005; Adams et al, 2006).
Improvements in health and wellbeing
The interactions between welfare advice, environment, socio-economic status, quality of life
(the wider determinants of health) and health are complex. This complexity, coupled with an
absence of good quality evidence, rather than evidence of absence of an effect, goes
someway to explain the mixed results regarding the impact of welfare rights advice on
health and social wellbeing that are reported in the literature. Overall, results from the most
robust studies suggest that an impact of welfare rights advice on an individuals’ physical
health is limited and/or hard to detect (Abbott & Hobby, 1999; Abbott, 2002; Wiggan &
Talbot, 2006; Adams et al., 2006). However, there is a growing body of evidence to suggest
that successful welfare rights intervention may have a positive impact on mental health and
social well being, and that placing advisory services in a health context is particularly
effective for reaching eligible non-recipients of benefits (Abbott & Hobby, 1999; Abbott
Helen Harris BSc PhD FFPH, January 2013
29
2002; Coppel et al, 1999; Abbott and Hobby, 2000; Greasley and Small, 2002; Harding et al,
2002; Caiels and Thurston, 2004; Moffatt et al, 2004; Citizens Advice Bureau, 2005; Adams et
al, 2006; Wiggan & Talbot, 2006).
Information assessing changes in emotional health and wellbeing were gathered in the
current study in a variety of ways, using statements that have been identified in previous
studies from quantitative non-scaler health and social outcome studies (Adams et al., 2006),
as well as via validated psychometric tools that are not limited by retrospective and recall
biases (SF-36; Ware & Sherbourne, 1992). Nearly three quarters of respondents to the post-
advice questionnaire, reported feeling less worried or stressed; over two thirds reported
feeling better in themselves; and more than half reported an improved quality of life
following contact with the GOSH CAB service. More than 60% reported feeling better able to
cope with their day-to-day living; more than 70% felt that their problems/situations had
improved as a result of the advice they had received and nearly 85% reported that they had
received useful, practical advice that had helped them to manage things better. For those
clients completing both pre- and post-advice questionnaires, statistically significant
improvements in emotional wellbeing and role limitations due to emotional problems (Ware
& Sherbourne, 1992) were observed.
Overall, these findings support the views of others (Veitch & Terry, 1993; Jarman, 1985;
Coppell et al., 1999; Abbott & Hobby, 2000; Abbott, 2002), suggesting that welfare rights
advice in a healthcare settings can decrease worry and anxiety and improve mental health
and quality of life.
Economic
While the present evaluation was not an economic one, it can be useful to collect evidence
of any economic savings that have been made along the way. This helps to make informed
judgements about whether the outcomes of a service were worth the cost. Such savings can
then be balanced against the known inputs of time, money and materials and can help to
secure the future of the service when resources are scarce and competition for them is high.
During stakeholder interviews with GOSH ward managers, charge nurses, ward sisters, social
workers and family support workers, it was clear that many of these individuals felt that
referring certain issues to the CAB service (that they would have previously dealt with
themselves) would free up a proportion of their time for other work. Information gathered
on the service referral form suggested that this was indeed the case with nearly two thirds
of all staff referring clients to the GOSH CAB, reporting that they had saved time by passing
Helen Harris BSc PhD FFPH, January 2013
30
these issues to the GOSH CAB service. Over the 3 year period of study approximately 17
weeks of staff time was saved; for this service this equates to savings of around £8,700 per
annum. Previous evaluations of the introduction of welfare rights advice services in primary
healthcare settings have also shown that considerable amounts of time can be free-up for
other work (Greasley and Small, 2002).
Interviews with key staff involved in the management and care of children on certain wards
felt that referral and prompt resolution of certain issues by the GOSH CAB service had the
potential to speed-up discharge home - something that is clearly desirable from both the
patient/family and Trust perspectives. This was indeed the case, and all reported cases
related to helping families obtain accommodation that was suitable for their child’s needs. In
all cases, families had extremely complex social and medical problems that could only be
resolved with timely, skilled and knowledgeable advocacy. It is likely that considerable
savings were made because the CAB service was able to resolve these issues that were
delaying patient discharge home.
Another approach that can help to justify a service on economic grounds is to utilise it to
deliver other important services. Helping children and families to make healthy lifestyle
choices is a government policy priority (DoH, 2010; HM Treasury, 2003; DoH, 2004; DoH,
2005), and a CAB may be an ideal setting for distributing public health literature or
interventions targeted in this area (for example, packs including health promotion leaflets
relating to health and wellbeing: healthy eating, exercise, mental health, smoking, obesity,
alcohol/drug use, etc.). Furthermore, those who seek or require welfare rights advice might
well include groups that are considered hard to reach. Consequently, initiatives of this type
might further contribute towards reducing health inequalities (Acheson, 1998). The national
CAB service has already identified contributions that it can make in response to past
government public health policy (CAB, 2004) and in line with this, information on the
delivery of a specially designed leaflet signposting clients to health promotion resources was
included within the evaluation framework. However, less than 1 in 10 of the clients recalled
receiving this leaflet. This figure is likely to be low, partly because clients did not recall
receiving it (which in itself suggests the impact of the leaflet was low) or be because the
leaflet was not distributed. At the focus group GOSH staff felt that, due to their
independence and lack of specialist expertise, the CAB Advisor was not an appropriate
individual to be giving health promotion advice, however, the group did feel that it was the
CAB’s responsibility to, at least, signpost to health promotion advice because the service was
Helen Harris BSc PhD FFPH, January 2013
31
located within the hospital. Further work looking at how and when such materials, or other
joined-up public health interventions, might be delivered will be required, perhaps via of
focus group of CAB clients and staff.
Despite the finding from the focus group that GOSH staff were generally not eager to pass
on advice from the CAB advisor to families themselves, around 230 instances of second tier
advice were given by the CAB Advisor to GOSH staff members. Staff from a variety of
backgrounds requested and received advice for patients on a variety of issues and topics
including benefits, immigration, housing and employment; support and training of staff on
these and other issues was also given.
The evaluation framework design and utility
Interviews with stakeholders and a comprehensive review of the literature revealed the
above 7 outcome areas to be of importance in evaluating the success of the GOSH CAB
service. Where stakeholders’ expectations were less clear, interviews gave an opportunity to
re-focus and discuss outcomes of potential importance from local and national policy
perspectives, as well as those that had been identified in the literature and by others.
Talking to public health professionals with experience of similar initiatives helped to identify
relevant outcomes of interest and was useful for identifying potential pitfalls and signposting
to relevant literature.
Outcomes identified were broadly of two types: those that evaluated program effects, like
benefit uptake or improvements in health and wellbeing, and those that measured program
activities and hence were more process-related, like client satisfaction or activity and access.
Relating indicators to both process and outcome allowed the detection of small changes in
performance faster than if a single outcome was the only measure used. Furthermore, this
approach resulted in a set of broad-based measures that revealed how health outcomes
were the consequence of intermediate effects of the program.
Defining the outcomes for the service was not straight forward because many of the
outcomes were concerned with far less easily measured results like improvements in quality
of life, health and wellbeing or reduced levels of stress. However, the framework did
Helen Harris BSc PhD FFPH, January 2013
32
succeed in capturing these long-term outcomes as well as others that were more process-
related.
Outcome indicators were selected to measure the outcomes of interest (appendix 6) and a
variety of tools were designed or identified to gather the necessary outcome data
(appendices 1-5). Practicality of any evaluation framework is critical if it is to be taken-up on
the ground, so the framework was developed in consultation with those who would be using
it. Care was taken to balance the quantity of information gathered against the burden placed
on respondents to supply it, and at each stage of the process local logistics and culture were
taken into account. Progress and utility of the evaluation framework were discussed at each
quarterly GOSH CAB steering group meeting to ensure that problems with implementation
were identified promptly. It was then possible to adapt and modify the evaluation
framework in an iterative way to ensure that the evaluation kept pace with changing
conditions, and any problems or improvements that were identified could be addressed.
One of the most challenging aspects of the framework design was maintaining the link
between pre- and post-advice questionnaires so that changes in health status could be
monitored using subscales from the SF-36 (Ware and Sherbourne, 1992). Linking was
achieved by allocating a unique identifier to each client that was derived from the client’s
name and their child’s hospital number (e.g. a client called Helen Harris with a child whose
hospital number was 123456 was coded HeHa123456). Because names were not
consistently reported, particularly those of non-UK origin, this sometimes made automated
questionnaire linking difficult. Linking also meant that questionnaires had to be coded
before issue. Overall, the additional work that linking created might be difficult to justify,
particularly if the challenge compromised participation in the evaluation. Practicality and
utility should underpin every evaluation framework, and since changes in health and
wellbeing were successfully captured via a variety of other questions on the post-advice
questionnaire, it may be appropriate to limit the framework to these other indicators and
exclude the questions from the SF-36. This would also have the benefit of shortening the
post-advice questionnaire from 20 items to 18 items (by deleting Qs 17 and 18) and remove
the need for a client pre-advice questionnaire altogether.
The focus group and email questionnaire to wider hospital staff were quick, relatively easy to
administer/run, and very useful for assessing, activity, access, and service integration. Their
findings were also useful for informing the ongoing development of the service. The service
referral form was acceptable to staff and became quickly embedded as part of routine
Helen Harris BSc PhD FFPH, January 2013
33
service delivery. It provided invaluable information on savings of staff time as well as
allowing service managers to monitor referral gateway activity. Regular CAB manager
reports of cases whose discharge was hastened as a result of CAB activity, allowed
systematic collection of this cost-saving activity.
CONCLUSIONS
Overall, the evaluation framework was well received and provided data that enabled the
success of the service to be measured. It provided data to inform service development that
also helped to justify the existence of the service in challenging economic times.
During its first 3 years of service, the on-site CAB at GOSH provided welfare rights advice to
more than 745 parents and carers of children at GOSH, helping them to access benefits,
manage debts, and solve a variety of other welfare problems while at GOSH. Many of the
service users were receiving independent advice for the first time and may well have slipped
through the net if the service had not been there. The on-site service was accessible to
groups that are hard to reach, including BME populations, single parents, those with
dependent children, disabilities and caring responsibilities, as well as to those living in some
of the most deprived areas of the country with known high levels of child poverty.
Levels of client satisfaction with the service were extremely high and it was clear that the
service provided a lifeline to many families within the hospital. For the parents and carers of
children in intensive care or with a diagnosis of cancer, the service was particularly valuable.
Since the introduction of the CAB service, the economic savings of staff time were not
insignificant, at around £8700 per annum, and the CAB Advisor was able to provide more
than 230 instances of second tier advice to GOSH staff. Even with the relatively low levels of
service visibility, the CAB Advisor was working at capacity, and so improvements to the
service seem to a large degree dependant on extending the existing service capacity, either
by employing a second advisor or by developing capacity in other innovative ways, for
example via use of trained volunteers. Increased capacity would also help to address the
need for some out-of-hours provision, particularly at weekends, and allow the possibility of
direct outpatient referrals to be explored. If service capacity could be extended, it would be
important to enhance the visibility of the service within the hospital and further educate
Helen Harris BSc PhD FFPH, January 2013
34
staff on what services the CAB can provide at GOSH, how they can refer patients to it, and
where it is located.
The practical value of the increased incomes and reduced levels of debt that were achieved
by many of the parents and carers using the GOSH CAB service cannot be underestimated.
Furthermore, evidence from this study suggested that a positive effect on client’s mental
health and wellbeing can also be achieved. Welfare rights advice for families of children
attending GOSH, particularly its potential contribution towards improving psychological
status in those benefiting from increased incomes, has considerable potential to contribute
to a long term reduction in ill health associated with anxiety and stress. Timely resolution, or
progress towards resolving, a whole variety of possible issues that might relate to debt,
housing, employment, immigration, education or strain on personal relationships was shown
to be invaluable for many families caring for sick children at GOSH.
Following a strategic review of health inequalities in England post 2010, it was concluded
that reducing health inequalities required action in six policy areas (Marmot Review, 2010).
On-site welfare rights advice services, like those at GOSH, will action four of these, namely:
helping to give every child the best start in life; enabling all children, young people and adults
to maximise their capabilities and have control over their lives; strengthen the role and
impact of ill health prevention; and ensuring a healthy standard of living for all. To be
effective in tackling health inequalities, support has to be tailored to the realities of
individuals’ lives, with services and support personalised sensitively and provided flexibly
and conveniently (DoH Choosing Health, 2004). People will not remain hard to reach if
services become easy to access.
A multidisciplinary approach to address the wider determinants of health across the NHS,
Public Health, and Social Care has recently been called for (DH, 2010; DH, 2011), and the
GOSH CAB service is aligned with this vision. By joining up services, GOSH has helped to
address the wider determinants of health to improve the health and wellbeing of families of
children at GOSH, and has addressed inequalities by helping to improve the health of the
poorest fastest. Child poverty, homelessness and self-reported wellbeing have all been
identified as key indicators by which progress in this area can be monitored (DH, 2011).
The on-site CAB service has helped GOSH to meet the government standards of quality and
safety in particular those relating to Personalised Care, Treatment and Support (CQC, 2010).
By co-operating with other providers, GOSH has enabled service users, and those acting on
Helen Harris BSc PhD FFPH, January 2013
35
their behalf, to access the other health and social care services that they need (Outcome 6;
CQC, 2010). Similarly, service users experience, safe and appropriate care, treatment and
support that meets their needs and protects their rights (Outcome 4; CQC, 2010) because the
service is centred on service users and their families, considers all aspects of their individual
circumstances and their immediate and longer-term needs, and sustains their welfare
enabling them to maintain, return to, or manage changes in their child’s health and their
family’s social circumstances. In a similar way, the service provides information and support
on benefit entitlement, which is part of the evidence sought by inspectors to help judge that
action is being taken by partners to support families in maximising their economic wellbeing,
one of the five outcomes in the Every Child Matters Outcomes Framework (DfES, 2005).
For parents, carers and families of children at GOSH, the practical realities of caring for a sick
child often compound to make the prospect of dealing with the day-to-day challenges of life
overwhelming. By providing an on-site welfare rights advice service, GOSH have been able to
alleviate some of the emotional stresses and financial hardship that are encountered by
many parents, carers and families attending the hospital. Such services will be increasingly
important as the impact of welfare reform in the current challenging economic climate takes
effect, often with disproportionate impact on the families of disabled children (Office of the
Children’s Commissioner, 2012)
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Abbott S and Hobby L. Welfare benefits advice in primary care: evidence of improvements in
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36
Abbot S, Hobby L, Cotter S. What is the impact on individual health of services in general
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Acheson D. Independent Inquiry into Inequalities in Health Report [ISBN 0 11 322173 8]. The
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Adams J, White M, Moffatt S, Howel D and Mackintosh J. A systematic review of the health,
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Borland J. and Owens D. Welfare Advice in General Practice – The Better Advice, Better
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Caiels J. and Thurston M. Evaluation of the Health and Social Welfare Support Service,
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Care Quality Commission. Guidance about compliance. Essential standards of quality and
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Child Poverty Action Group. End Child Poverty, Child Poverty Map of the UK – Part 1:
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Citizens Advice Bureau. ‘Choosing Health’ Citizen Advice’s response to the Department of
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Citizens Advice Bureau. Prescribing advice: Improving health through CAB advice services,
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Coppel DH, Packham CJ, Varnam MA. Providing welfare rights advice in primary care. Public
Health 1999; 113: 131-135.
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Department for Communities and Local Government. The English Indices of Deprivation
2010. ISBN: 978-1-4098-2922-5. Crown Copyright, London. March, 2011
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good relations in 2010, The First Triennial Review, pg 651, 2011.
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by the Every Disabled Child Matters Campaign. London, August 2007.
Greasley P and Small N. Welfare Advice in Primary Care, Nuffield Portfolio Programme
Report No. 17, Nuffield Institute of Health, Leeds, 2002.
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Harding R, Sherr L, Singh S, Sherr A and Moorhead R. Evaluation of welfare rights advice in
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Citizen’s Advice in General Practice. BMJ 1993; 307: 504.
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1999; 48(RR11): 1-40.
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Moffatt S, White M, Stacy R, Downey D and Hudson E. The impact of welfare advice in
primary care: a qualitative study. Critical Public Health 2004; 14: 295-309.
Office of the Children’s Commissioner. Child Rights Impact Assessment of the Welfare
Reform Bill. (http://www.childrenscommissioner.gov.uk/content/publications/content_555)
January, 2012
Preston G. Helter Skelter: Families, disabled children and the benefits system, CASE Paper
92, Centre for the Analysis of Social Exclusion, London School of Economics, 2005.
Sherratt M, Jones K, Middleton P. A citizens’ advice service in primary care: improving
patient access to benefits. Primary Health Care Research & Development 2000; 1: 139-146.
Veitch D, Terry A. Citizens’ Advice in General Practice: patients benefit from advice. BMJ
1993; 307: 262.
Ware JE, Sherbourne CD. The MOS 36-item Short-Form Health Survey (SF-36): I. Conceptual
Framework and Item Selection. Medical Care 1992; 30: 473-483.
Wiggan J and Talbot C. The benefits of welfare rights advice: a review of the literature.
Commissioned by the National Association of Welfare Rights Advisors, 2006.
(http://www.nawra.org/nawra/docs_pdf/Benefitsofwelfarerightsadvicelitreview.pdf)
Whitehead M. Inequalities in health: the Black Report and the Health Divide. Eds. Townsend
P and Davidson N. Penguin Books Ltd, Suffolk, 1992.
Young HC, Grundy E, Jitlal. Care providers, care receivers: A longitudinal perspective. ISBN
978 1 85935 516 9. Joseph Rowntree Foundation. York, 2006.
Helen Harris BSc PhD FFPH, January 2013
40
ACKNOWLEDGEMENTS
I would like to thank the following individuals for their advice and contributions to this
service evaluation framework: Jane Anderson (GOSH Social Worker); Melanie Anderson
(Chief CAB Officer, Hope Hospital CAB Service); Sebastian Carter (Manager, Holborn CAB
Service); Sue Chapman (GOSH Nurse Consultant); Maria Collins (GOSH Director of
Partnership Development); Dr Natasha Crowcroft (Consultant Epidemiologist) Ontario
Ministry of Health and Long Term Care, Toronto, Canada; Alan Eagle (Manager, Abbey
Charitable Trust); Maureen Fergusson (GOSH Charge Nurse); Christina Gray (Associate
Director of Public Health – Equality & Social Inclusion, Bristol Primary Care Trust); Denise
Gregory (GOSH Family Support Worker); Madeline Ismach (GOSH Head of Psychosocial and
Family Services); James Lewis (Senior GIS Project Scientist); Jon Linthicum (GOSH Chaplain);
Rachel Milford (GOSH Ward Sister); Grainne Morby (GOSH Family Advocate and PALS
Manager); Carolyn Payne (GOSH Senior Social Worker & FSW Manager); Jonathon Perks
(GOSH Charge Nurse); Sue Pike (GOSH Lead Nurse); Lysander Tennant (Camden CAB
Service); Geraldine Trimmer (GOSH Family Support Worker); Lucy Thomas (GOSH Ward
Manager) and Nick Wright (GOSH CAB Service Manager).
Two subscales from the 36-Item Short Form Health Survey are reproduced here with
permission from the RAND Corporation. Copyright © the RAND Corporation. RAND's
permission to reproduce the survey is not an endorsement of the products, services, or
other uses in which the survey appears or is applied.
Helen Harris BSc PhD FFPH, January 2013
41
TABLES
Table 1. Summary of client responses to service accessibility
statements on post-advice questionnaire (n=110) (appendix 2)
Statement Strength of response*
AS [n (%)]
A [n (%)]
NAD [n (%)]
D [n (%)]
DS [n (%)]
NR [n (%)]
I found the advice service easy to access in the first place
47 (43)
49 (45)
6 (6)
4 (4)
1 (1)
3 (3)
I found the advice service easy to access after my first contact
49 (45)
46 (42)
7 (6)
1 (1)
1 (1)
6 (6)
I was able to get hold of the advisor when I needed to
48 (44)
47 (43)
7 (6)
3 (3)
0 (0)
5 (5)
The opening hours suited me 40 (36)
56 (51)
8 (7)
2 (2)
1 (1)
3 (3)
I wish the service had been available every day
28 (26)
39 (36)
36 (33)
3 (3)
1 (1)
3 (3)
I wish the service had been available in the evenings
21 (19)
25 (23)
41 (37)
17 (16)
2 (2)
4 (4)
I wish the service had been available at the weekend
20 (18)
33 (30)
35 (32)
14 (13)
4 (4)
4 (4)
*AS – Agree strongly; A – Agree; NAD – Neither agree nor disagree; D – Disagree; DS – Disagree strongly; NR – no response.
Table 2. What GOSH staff responding to the email questionnaire (n=
68) (appendix 4) would do if they felt that a patient, carer or family
would benefit from some help with welfare rights or benefits advice...
Action CNS Sisters/Matrons
PICU/NICU Psychology Others Total (%)
Nothing 1 1 (1)
Refer to FSW 8 9 3 4 10 34 (29)
Refer SW 11 11 3 12 37 (31)
Refer Chaplaincy 1 1 (1)
Refer PALS 4 6 3 1 10 24 (20)
Contact a CAB 2 4 1 2 7 16 (13)
Not sure 1 1 2 4 (3)
Omitted Q 1 1 2 (2)
Total 26 32 11 8 42 119 (100)
Helen Harris BSc PhD FFPH, January 2013
42
Table 3. Responses by GOSH staff responding to the email
questionnaire (appendix 4) assessing the broader visibility and
understanding of the service within the hospital (n= 68) Questions C
NS
Sist
ers
/ M
atro
ns
PIC
U/N
ICU
Psy
cho
logy
Oth
ers
All
GOSH has an in-house Citizen’s Advice Bureau
Service. Did you know that? Yes [n (%)]
7/17 (41)
6/14 (43)
1/4 (25)
1/4 (25)
2/24 (8)
17/63 (27)
Do you know what sort of service they provide? Yes [n (%)]
3/7 3/5 1/3 0/1 1/1 8/17 (47)
Do you know where the service is located? Yes [n (%)]
6/7 2/6 1/1 0/1 1/2 10/17 (59)
Do you know how to refer individuals to this service? Yes [n (%)]
3/7 2/6 1/1 0/1 0/2 6/17 (35)
Table 4. A selection of direct quotations from the post-advice
questionnaires (appendix 2) illustrating the value of the GOSH CAB
service to some clients. Quotations
“I would like to thank you as you helped us to change our life”
“We could not have asked for a better service”
“[CAB Advisor] has made such a difference to our lives”
“This is the best place to talk about personal matters”
“Made a huge difference as I had never claimed benefits before and was unaware to what I was entitled”
“A very handy place to have an advice service as I couldn’t leave hospital to seek further advice”
“Having CAB services there took a great deal of pressure off my shoulders”
“It made a huge difference to me. I was lost, I didn’t know what to do but you made it so easy” “They listen to you, provide information. They took action on my behalf and kept me informed”
“The money obtained helped with heart transplant as my daughter lives a better life with less restrictions”
“CAB made a great difference to me and my family and we are grateful for all your help”
“The extra income I received helped me to pay for transport and an ‘easy rise’ chair”
Helen Harris BSc PhD FFPH, January 2013
43
Table 5. Reported utility of additional money from those clients
reporting extra income or reduced level of debt (n=110) on their
post-advice questionnaires (appendix 2).
Expenditure area Yes [n (%)]
No [n (%)]
Not known or reported [n
(%)]
Food costs 29 (26) 12 (11) 69 (63)
Transport costs 35 (32) 9 (8) 66 (60)
Essential items for your home 19 (17) 17 (16) 74 (63)
Paying for care needs 23 (21) 13 (12) 74 (67)
Paying for housing or to improve housing conditions 21 (19) 12 (11) 77 (70)
Household bills or debts 26 (24) 11 (10) 73 (66)
Enable you to socialise more 11 (10) 21 (19) 78 (71)
Table 6. Summary of client responses to the question on post-advice
questionnaire (appendix 2): “Following contact with the GOSH Cab
service, did you....” (n=110)
Statement Strength of response*
AS [n (%)]
A [n (%)]
NAD [n (%)]
D [n (%)]
DS [n (%)]
NR [n (%)]
... feel less worried or stressed? 23 (21)
46 (42)
22 (20)
4 (4)
0 (0)
15 (14)
... feel better in yourself? 19 (17)
43 (39)
27 (25)
3 (3)
0 (0)
18 (16)
... feel that you now have an improved quality of life?
19 (17)
32 (29)
34 (31)
9 (8)
0 (0)
16 (15)
... feel that you can now cope better with your day-to-day living?
11 (10)
46 (42)
28 (26)
6 (6)
1 (1)
18 (16)
... feel that your problem/situation improved as a result of the advice and information that you received?
30 (27)
39 (36)
21 (19)
3 (3)
1 (1)
16 (15)
... feel that you received useful, practical advice that helped you to manage things better?
29 (26)
47 (43)
12 (11)
4 (4)
0 (0)
18 (16)
*AS – Agree strongly; A – Agree; NAD – Neither agree nor disagree; D – Disagree; DS – Disagree strongly; NR – no response.
Helen Harris BSc PhD FFPH, January 2013
44
Table 7. Reported time saved by GOSH staff (appendix 3) as a result of
referring families to the GOSH CAB service.
Time saved
N (%) Estimated total hours saved*
Less than 1 hour 61 (19.2) 30.5
1-2 hours 97 (30.6) 145.5
2-4 Hours 87 (27.4) 261
4-6 hours 30 (9.5) 150
More than 6 hours** 2 (0.6) 22
Not known/reported 40 (12.6) 88
Total 317 (100) 697
*< 1hr is coded as 30 minutes; 1-2hrs coded as 1.5hrs; 2-4hrs coded as 3hrs; 4-6hrs coded as 5hrs; >6hrs coded as 8hrs if not specified; Not known/reported coded as 2.2hrs (the mean number of hours saved by the 277 reporting a time saved).
** One reported saving 14 hours of time
Table 8. Areas that GOSH staff received second tier advice in, from the
CAB Advisor
Principal advice area
N
Benefits Disability 45 General 55 Multiplier Appeals
6 2
Debt 5
Employment 16
Housing 25
Immigration 36
Other 41
Total 231
Helen Harris BSc PhD FFPH, January 2013
45
FIGURES
Figure 1. Age distribution of the 745 GOSH CAB clients seen between
October 2008 and October 2011 (source: CAB CASE database)
Figure 2. Ethnicity of the 745 GOSH CAB clients seen between October
2008 and October 2011 (source: CAB CASE database)
0
50
100
150
200
250
300
350
400
0-16 17-24 25-34 35-49 50-64 >65 Not known
Helen Harris BSc PhD FFPH, January 2013
46
Figure 3. Income profile of the 745 GOSH CAB clients seen between
October 2008 and October 2011 (source: CAB CASE database)
Figure 4. Occupation type of the 745 GOSH CAB clients seen between
October 2008 and October 2011 (source: CAB CASE database)
Helen Harris BSc PhD FFPH, January 2013
47
Figure 5. Speciality caring for the children of parents/carers
attending the GOSH CAB service (n =493) (appendix 3).
0
10
20
30
40
50
60
70
80
90
100
Neurology, neuromuscular, neurosurgery & craniofacialOrthopaedics
RespiratoryHaematology & Onchology
Cardiology & CardiothoracicUrology & Opthalmology
Dermatology & RheumatologyENT
Gastro & EndocrinologyRenal
ID and ImmunologyBMT
Metabolic medicinePsychological medicine
Audiology
0 5 10 15 20 25 30 35
Fre
qu
en
cy
Specialty caring for child
Outpatients
(n=90)
Helen Harris BSc PhD FFPH, January 2013
48
Appendices
Helen Harris BSc PhD FFPH, January 2013
49
Appendix 1. Client pre-advice questionnaire
Citizen’s Advice Bureau Service
Pre-advice client questionnaire
Your Name: ……………………………….. Child’s Name……………...…………………
Relationship to the child: ……………………………………………………………………..
Child’s Hospital Number: …………………………………………………………………….
In order to help us evaluate the effectiveness of our Citizen’s Advice Bureau Service here at Great Ormond Street Hospital, it would be really helpful if you could answer the questions below:-
1. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling
depressed or anxious)?
(Circle one number on each line)
Yes No
Cut down the amount of time you spent on work or other activities 1 2
Accomplished less than you would like 1 2
Didn’t do work or other activities as carefully as usual 1 2
2. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way
you have been feeling.
How much of the time during the past 4 weeks………
(Circle one number on each line) All of the time
Most of the time
A good bit of the time
Some of the time
A little of the time
None of the time
Have you been a very nervous person? 1 2 3 4 5 6
Have you felt so down in the dumps that nothing could cheer you up?
1 2 3 4 5 6
Have you felt calm and peaceful? 1 2 3 4 5 6
Have you felt downhearted or blue? 1 2 3 4 5 6
Have you been a happy person? 1 2 3 4 5 6
3. Please feel free to add any comments below:
……………………………………………………………………………………………………………..
Many thanks for completing this questionnaire.
Helen Harris BSc PhD FFPH, January 2013
50
Appendix 2. Client post-advice questionnaire
Citizen’s Advice Bureau Service
Post-advice client questionnaire
CAB CASE No: …………..………………………………………………………………….
20 Questions to help us out!
In order to help us evaluate the effectiveness of our Citizen’s Advice Bureau Service here at Great Ormond Street Hospital, and as part of our commitment to improving the service we provide, we send our clients this questionnaire. We would be very grateful if you could help
us by completing this form and returning it in the enclosed envelope (you do not need a stamp).
Please be assured that your responses will be completely confidential.
1. Is this the first time that you have sought or received independent advice?
Yes No
2. Please tell us how you heard about the Citizen’s Advice Bureau Service and whether it was easy or difficult to make initial contact. ………………………………………………………………………………………….. …………………………………………………………………………………………..
3. Please indicate whether you agree or disagree with the following statements (by
putting a tick in the box that best indicates how you feel):
Agree strongly
Agree
Neither agree nor disagree
Disagree
Disagree strongly
I found the advice service easy to access in the first place.
I found the advice service easy to access after my first contact.
I was able to get hold of the advisor when I needed to.
The opening hours suited me. I wish the service had been available every day.
I wish the service had been available in the evenings.
I wish the service had been available at the weekend.
Helen Harris BSc PhD FFPH, January 2013
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4. How satisfied were you with our overall level of service (including the quality, clarity, speed & usefulness of the information and advice that you received)? (Please tick just
one box) Very satisfied Fairly dissatisfied Fairly Satisfied Very dissatisfied Undecided
4a. If you were dissatisfied, could you please tell us briefly why this is?
………………………………………………………………………………………….. …………………………………………………………………………………………..
5. Did we give you information/advice that was easy to understand? (Please tick just one box) Very easy Fairly difficult Fairly easy Very difficult Undecided
5a. How might we improve?
………………………………………………………………………………………….. …………………………………………………………………………………………..
6. How informative did you find our staff? (Please tick just one box) Very good Fairly poor Fairly good Very poor Undecided
7. How well did we keep you up-to-date with progress? (Please tick just one box) Very well Fairly poor Fairly well Very poor Undecided Not Applicable - one off advice given
8. How well did we listen to what you had to say? (Please tick just one box) Very well Fairly poor Fairly well Very poor Undecided
9. Did we treat you fairly at all times? (Please tick just one box) Yes No Don’t know
9a. If you believe you were treated unfairly due to e.g. your ethnic background, sex, religion or any other reason please tell us briefly what happened. ………………………………………………………………………………………….. …………………………………………………………………………………………..
Helen Harris BSc PhD FFPH, January 2013
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10. Would you recommend us to someone else if they needed legal help or advice? (Please tick just one box)
Certain to Unlikely to Likely to Certain not to Undecided
10a. Please give your reason(s) for your answer to Q10.
………………………………………………………………………………………….. …………………………………………………………………………………………..
11. Was the result of your case better, worse or the same as we had advised you? (Please tick just one box)
Better Same Worse
12. Do you have any further comments or suggestions that may help us to improve our level of service? Please continue on another sheet if necessary. ………………………………………………………………………………………….. ………………………………………………………………………………………….. …………………………………………………………………………………………..
13. Are there any general comments that you would like to make about the GOSH CAB service, particularly if the service made a difference to you? ………………………………………………………………………………………….. …………………………………………………………………………………………..
14. On a scale of 1 to 10, how valuable has the service been to you? (Please circle your choice- 1 not valuable at all, 10 extremely valuable)
1 2 3 4 5 6 7 8 9 10
15. Did we help you to obtain any extra income? Yes No
16. Did we help you reduce your level of debt? Yes No
If you answered ‘yes’ to either question 15 or 16, did the extra income help you with any of the areas listed below? -
Food costs Yes No Transport costs Yes No Essential items for your home Yes No Paying for care needs Yes No Pay for housing or to improve housing conditions Yes No Household bills or debts Yes No Enable you to socialise more Yes No Any other benefit (please give brief details): …………………………………………………………...…………………… …………………………………………………………...……………………
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17. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?
(Circle one number on each line)
Yes No Cut down the amount of time you spent on work or other activities. 1 2 Accomplished less than you would like……………………………… 1 2 Didn’t do work or other activities as carefully as usual……………… 1 2
18. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling.
How much of the time during the past 4 weeks……… (Circle one number on each line)
All of
the time
Most of the time
A good bit of the time
Some of the time
A little of the time
None of the time
Have you been a very nervous person?
1 2 3 4 5 6
Have you felt so down in the dumps that nothing could cheer you up?
1 2 3 4 5 6
Have you felt calm and peaceful? 1 2 3 4 5 6 Have you felt downhearted or blue? 1 2 3 4 5 6 Have you been a happy person? 1 2 3 4 5 6
19. Following contact with the GOSH CAB service, did you…..
Agree strongly
Agree
Neither agree nor disagree
Disagree
Disagree strongly
…feel less worried or stressed? …feel better in yourself? …feel that you now have an improved quality of life?
…feel that you can now cope better with your day-to-day living?
… feel that your problem/situation improved as a result of the advice and information that you received?
…feel that you received useful, practical advice that helped you to manage things better?
20. Did you receive a free health promotion pack from the CAB advisor?
Yes No Please feel free to add any comments below: ……………………………………………………………………………………………… ………………………………………………………………………………………………
Many thanks for completing this questionnaire.
Helen Harris BSc PhD FFPH, January 2013
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Appendix 3. GOSH CAB Service referral form
Date of referral (dd/mm/yyyy): ……./……./…….
Gateway that the referral came via (e.g. PALS, SW etc.): ……………………......……
Child’s details:
Surname: …………………………………………. Forename: …………………………
DOB (dd/mm/yyyy): ……./……./……. Sex: M/F
Address: …………………………………………………………………………………....….
Telephone: ………………………………………………………………………………….....
Clinical details:
GOSH hospital number: ………………………. Ward: ……………...………………
Lead consultant: ……………………………………………………………………………
Diagnosis: ……………………………………………………………………………………………………………………………………………………………………………………………………
Parent/carer details:
Name(s): ……………………………………………………………………………………..
Reason for the CAB referral: ……………………………………………………………………………………………………………………………………………………………………………………………………
Details from source referrer (i.e. the individual who picked-up the issue and initiated the
referral)
Name of source referrer: …………………………………………………………………….
Job title: ………………………………………………………………………………………..
If you had not been able to refer this issue to the CAB service, would you have spent time dealing with the issue yourself or finding another to help sort it out?
Yes No Not known
If you answered ‘yes,’ from your experience, could you estimate how much time you think you might have spent on this?
…………………………………….. (hours)
Helen Harris BSc PhD FFPH, January 2013
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Appendix 4. Email questionnaire to wider hospital staff
1. If you feel that a patient, carer or family would benefit from some help with welfare rights or benefits advice, what would you do?
Please tick as many of the statements below that apply:-
Probably nothing as this would not fall within my area of responsibility
Probably nothing if I’m honest, as I do not have the time
Refer them to a Family Support Worker
Refer them to Social Work
Refer then to the Chaplaincy
Refer them to PALS
Suggest they contact a Citizen’s Advice Bureau (or other similar service)
I am not sure what I would do
Something else (please give brief details):
……………………………………………………………..
……………………………………………………………..
……………………………………………………………..
……………………………………………………………..
……………………………………………………………..
2. GOSH has an in-house Citizen’s Advice Bureau Service. Did you know that?
Yes No
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If yes, please answer the following questions:
i. Do you know what sort of service they provide (please tick)?
Yes No
If yes, please briefly describe
……………………………………………………………..
……………………………………………………………..
……………………………………………………………..
ii. Do you know where the service is located (please tick)?
Yes No
If yes, where is it:
……………………………………………………………..
……………………………………………………………..
……………………………………………………………..
iii. Do you know how to refer individuals to this service (please tick)?
Yes No
If yes, how please say how:
……………………………………………………………..
……………………………………………………………..
……………………………………………………………..
Helen Harris BSc PhD FFPH, January 2013
57
Appendix 5: Focus group discussion questions to help assess service
activity, integration and access.
Q1: Do GOSH staff think it is a good thing to have a CAB service within the hospital?
Are staff broadly supportive of it, or do they feel it is really outside their remit?
Q2: Are GOSH staff aware of the service that is offered by the GOSH CAB? If GOSH
staff felt that a family would benefit from welfare rights advice, where would they
direct them internally/externally? Any confusion over who provides what service?
Q3: Is the visibility (to GOSH staff and potential clients) of the service sufficient? Is its
visibility sufficient/appropriate to reach those in greatest need of its services? What
about its physical location?
Q4: Do GOSH staff feel that the current service referral pathways are
appropriate/adequate? Are any important client groups missed......non-parent
carers, BME groups? If so, who are they and why are they missed?
Q5: Is there a need for an extended service e.g. outside of routine office hours? Are
any individuals excluded from accessing the service because it only operates within
certain office hours?
Q6: In some instances, would/do GOSH staff find it useful to seek advice from the
CAB advisor themselves and then pass this information onto families? Do some
families prefer this approach? Are there common issues that crop up habitually that
GOSH staff would like to learn more about? Any staff groups in particular?
Helen Harris BSc PhD FFPH, January 2013
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Appendix 6: GOSH CAB Service Evaluation Framework, showing outcomes and indicators
OUTCOME
INDICATORS
SOURCE
Profile and
background of
GOSH CAB service
users
Age
Sex/Gender
Ethnicity
Occupation
Disability
Marital status
Household type
Occupation type
Income profile
Housing tenure
Number of child dependents
Number of adult dependents
Postcode and Local Authority of residence
Summary of issues brought (e.g. benefits, housing, immigration, debt, employment)
CAB CASE
database
Reason for referral
Source (gateway) of referral (e.g. PALS, SW, etc.)
Service referral
form
Q: “Is this the first time that you have sought or received independent advice?”
Client follow-up
questionnaire
Activity and access
Numbers of clients seen (n/yr) [Funder KPI]
Numbers of issues presented (n/yr)
CAB CASE
database
Q9. from CAB client feedback questionnaire (see appendix 4) ……….”Please tell us how you heard about our organisation and whether it was easy or difficult to
make initial contact?
Client follow-up
questionnaire
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Q. Please indicate whether you agree or disagree with the following statements:
…… I found the advice service was easy to access in the first instance. [Funder KPI]
…… I found the advice service easy to access after my first contact. [Funder KPI]
…… I was able to get hold of the advisor when I needed to.
…….The opening hours suited me.
…… I wish the service had been available every day.
…… I wish the service had been available in the evenings.
…… I wish the service had been available at the weekend.
Respondents could be asked to grade their responses on a Likert scale:-
Strongly disagree; Disagree; Neither agree nor disagree; Agree; Strongly agree
Assess access in relation to service location, perceived demand, awareness of the service and the adequacy/acceptability of referral pathways.
Key staff/CAB
workers focus
group
Service
development and
integration
Assess the adequacy/acceptability of access/referral pathways.
Assess how well the CAB service has integrated with existing welfare services to work together to meet the needs of patients.
Key staff/CAB
workers focus
group
Q. If you feel that a patient, carer or family would benefit from some help with
welfare rights or benefits advice, what would you do?
Please tick as many of the statements below that apply:-
Email questionnaire
to wider hospital
staff
Helen Harris BSc PhD FFPH, January 2013
60
Probably nothing as this would not fall within my area of responsibility
Probably nothing if I’m honest, as I do not have the time
Refer them to a Family Support Worker
Refer them to Social Work
Refer then to the Chaplaincy
Refer them to PALS
Suggest they contact a Citizen’s Advice Bureau (or other similar service)
I am not sure what I would do
Something else (please give brief details):
……………………………………………………………..
……………………………………………………………..
Q. GOSH has an in-house Citizen’s Advice Bureau Service. Did you know that?
If yes, please answer the following questions:
Yes No
1. Do you know what sort of service they provide (please tick)? Yes No
If yes, please briefly describe
……………………………………………………………..
……………………………………………………………..
2. Do you know where the service is located (please tick)? Yes No
If yes, where is it:
……………………………………………………………..
……………………………………………………………..
3. Do you know how to refer individuals to this service (please tick)? Yes No
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If yes, how please say how:
……………………………………………………………..
Client experience
CAB client feedback questionnaire (see appendix 4) incorporated within the client follow-up questionnaire, with slight modification to Q.4 to enable reporting of Funder KPI. [Funder KPI]
Free-text Q: Are there any general comments that you would like to make about the GOSH CAB service, particularly if the service made a difference to you?
On a scale of 1 to 10, how valuable has the service been to you? (please circle your choice- 1 not valuable at all, 10 extremely valuable)
1 2 3 4 5 6 7 8 9 10
Client follow-up
questionnaire
Uptake of benefits
and extra financial
resources obtained
Total lump sum/one off payments gained (£/year); also stratified by benefit type (e.g. DLA, AA etc.)
Mean lump sum/one-off payments per client seen (£)
Total yearly recurring benefits gained (£/year); also stratified by benefit type (e.g. DLA, AA etc.)
Mean yearly recurring benefit gained per client seen (£)
Total debt written off (£/year)
Total number of clients whose debts were successfully rescheduled (n) [All Funder KPI’s]
CAB CASE
database
Q. Did we help you to obtain any extra income? Yes No
Q. Did we help you reduce your level of debt? Yes No
If you answered yes to either of the above questions, did the
extra income help you with any of the areas listed below:
Client follow-up
questionnaire
Helen Harris BSc PhD FFPH, January 2013
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Food costs Yes No
Transport costs Yes No
Essential items for your home Yes No
Paying for care needs Yes No
Pay for housing or to improve housing conditions Yes No
Household bills or debts
Enable you to socialise more Yes No
Any other benefit (please give brief details):
Improvements in
health and
wellbeing
Two subscales from the 36-Item Short Form Health Survey (SF-36; Ware and Sherbourne, 1992) assessing role limitations due to emotional problems and emotional wellbeing.*
Client pre-advice
questionnaire AND
AGAIN on Client
follow-up
questionnaire
“Following contact with the GOSH CAB service, did you…..
……feel less worried or stressed?”
……feel better in yourself?”
……feel that you now have an improved quality of life?”
Client follow-up
questionnaire
Helen Harris BSc PhD FFPH, January 2013
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……feel that you can now cope better with your day-to-day living?”
……feel that you received useful, practical advice that helped you to manage things better?”
……feel that your problem/situation improved as a result of the advice & information you received?
[Funder KPI]
Respondents could be asked to grade their responses on a Likert scale:-
Strongly disagree; Disagree; Neither agree nor disagree; Agree; Strongly agree
Economic Q: Did you receive a free health promotion pack from the CAB advisor?
Client follow-up
questionnaire
Name of source referrer: …………………………………………………………………….
Job title: ………………………………………………………………………………………..
Q: If you had not been able to refer this issue to the CAB service, would you have spent time dealing with the issue yourself or finding another to help sort it out?
Yes No
If you answered Yes, from your experience, could you estimate how much time you think you might
have spent on this?
……………………………………….. (hours)
Service referral
form
Quarterly CAB manager report of cases where speedy resolution of issues (that had been preventing or delaying discharge) by the CAB service resulted in faster transition or discharge home
Estimated savings (£) = (Daily cost of caring for a patient on a particular ward) x (Ward
Manager/Charge Nurse’s estimate of the number of bed days saved).
Reported quarterly
at GOSH CAB
steering meetings
* Could be omitted to reduce workload and make the evaluation framework easier to implement on the ground (If omitted, the client pre-advice
questionnaire in appendix 1 is not needed nor are questions 17, and 18 in the client post-advice questionnaire in appendix 2).
64 Helen Harris BSc PhD FFPH on behalf of the GOSH CAB Steering Group
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