Delivering welfare rights advice in the acute hospital settingadviceservicestransition.org.uk/wp-content/uploads/2015/05/Harris... · Delivering welfare rights advice in the acute

Helen Harris BSc PhD FFPH, January 2013

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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: [email protected]

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:

mailto:[email protected]


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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


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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


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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


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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


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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).


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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


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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.


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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.


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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


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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,


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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


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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.


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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.


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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).


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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,


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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


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.


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(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


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


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


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)


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.


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


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


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


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


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


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.


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


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


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


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


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


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


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


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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Borland J. and Owens D. Welfare Advice in General Practice – The Better Advice, Better

Health Project in Wales, 2004. (http://www.priory.com/fam/advice.htm)

Caiels J. and Thurston M. Evaluation of the Health and Social Welfare Support Service,

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Citizens Advice Bureau. ‘Choosing Health’ Citizen Advice’s response to the Department of

Health. Citizens Advice, London, June 2004.

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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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.

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January, 2012

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patient access to benefits. Primary Health Care Research & Development 2000; 1: 139-146.

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Framework and Item Selection. Medical Care 1992; 30: 473-483.

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Commissioned by the National Association of Welfare Rights Advisors, 2006.

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Whitehead M. Inequalities in health: the Black Report and the Health Divide. Eds. Townsend

P and Davidson N. Penguin Books Ltd, Suffolk, 1992.

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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.


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)


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”


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.


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


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


46

Figure 3. Income profile of the 745 GOSH CAB clients seen between


Figure 4. Occupation type of the 745 GOSH CAB clients seen between



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)


48

Appendices


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.


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.


51

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. ………………………………………………………………………………………….. …………………………………………………………………………………………..


52

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): …………………………………………………………...…………………… …………………………………………………………...……………………


53

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.


54

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)


55

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


56

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:

……………………………………………………………..

……………………………………………………………..

……………………………………………………………..


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?


58

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


59

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


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


61

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


62

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


63

……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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