Carers and work report for Birmingham

A REPORT FOR BIRMINGHAM CITY COUNCIL CARERS’ COMMISSIONER

Carers and work
A study looking at barriers and aids to
returning to or staying in work,
for carers or recent carers, including pointers
for the development of a support pathway

Lesley Pattenson and Steve Bedser

July 2010

Carers and Work – a report for Birmingham City Council

CONTENTS
EXECUTIVE SUMMARY ............................................................................................ 7
Summary of key pathway pointers ............................................................................. 8
General Services for Carers ................................................................................... 8
Opening Doors for Carers (Crossroads) ................................................................. 9
Reality and Sensitivity........................................................................................... 11
Early Skills Building .............................................................................................. 11
Employment .......................................................................................................... 13
Other factors affecting employment prospects ..................................................... 14
Creative Pathways and Outcomes........................................................................ 14
Other Best Practice Issues ................................................................................... 15
INTRODUCTION AND BACKGROUND................................................................... 16
The commission brief ............................................................................................ 16
Pre-existing research ............................................................................................ 16
The research methodology ....................................................................................... 16
The carers‟ experience ......................................................................................... 16
Recruiting participants ....................................................................................... 17
Characteristics of the cohort of participants ...................................................... 17
Interviews .......................................................................................................... 18
Findings and analysis ........................................................................................... 19
Employers and employer support agencies .......................................................... 19
THE CARERS‟ RESPONSIBILITIES AND IMPLICATIONS FOR WORK ................ 20
Caring responsibilities .............................................................................................. 20
Parent-carers of children under 18 ....................................................................... 20
Transition to adulthood ...................................................................................... 21
Parent-carers of adult children .............................................................................. 22
Carers of partners ................................................................................................. 23
Carers of parents or other older relative ............................................................... 23
Planning for and following death of cared for person ........................................ 23
Multiple caring roles .............................................................................................. 24
DIVERSITY AND PERSONAL CHARACTERISTICS OF THE CARER AND THE
IMPLICATIONS FOR WORK ................................................................................... 25
Gender.................................................................................................................. 25
Partnership status ................................................................................................. 25
Lone parents/ carers ......................................................................................... 26

Lesley Pattenson and Steve Bedser 2


Relationship breakdown .................................................................................... 26
Residency in relation to the cared-for person ....................................................... 27
Age ....................................................................................................................... 27
Disability (of carer) ................................................................................................ 27
Sexual orientation ................................................................................................. 28
Ethnicity and country of origin ............................................................................... 28
Language.............................................................................................................. 29
Faith and culture ................................................................................................... 30
BARRIERS TO AND / OR FACILITATORS OF POTENTIAL FOR PAID WORK ..... 31
Recognition and acceptance of the carer role ...................................................... 31
Attitude to caring ................................................................................................... 32
Motivation for seeking / retaining paid work .......................................................... 32
Fears and concerns about juggling caring and work responsibilities .................... 34
Good organisation of work and home / domestic life ............................................ 35
FINANCIAL FACTORS IMPACTING ON CARERS GETTING OR STAYING IN
WORK ...................................................................................................................... 37
Maximising income – to work or not to work? ....................................................... 37
Benefits advice ..................................................................................................... 38
Carer‟s Allowance ................................................................................................. 39
FORMAL AND/OR ALTERNATIVE CARE ARRANGEMENTS ................................ 41
Statutory service provision .................................................................................... 42
Social Services.................................................................................................. 42
Children and Family Services ........................................................................... 42
Domiciliary care................................................................................................. 42
Day centres ....................................................................................................... 43
Education and school holiday schemes ............................................................ 44
Transport ........................................................................................................... 45
Health services.................................................................................................. 45
Direct Payments ................................................................................................... 46
SUPPORT FOR CARERS ....................................................................................... 50
Formal support ..................................................................................................... 50
Carer‟s Assessment.............................................................................................. 50
Carer support agencies ........................................................................................ 51
Carers‟ Emergency Response Service – CERS ............................................... 52
Birmingham Carers‟ Centre ............................................................................... 53
Funded carer support schemes......................................................................... 54
Carer and parent-carer support groups ............................................................. 55
Condition specific support groups ..................................................................... 56



Multiple support agencies and networks ............................................................... 57
Informal support networks .................................................................................... 57
Family ............................................................................................................... 57
Friends .............................................................................................................. 58
Faith and cultural groups ................................................................................... 59
MOVING TOWARDS WORK-READINESS ............................................................. 61
Access to information ........................................................................................... 61
Libraries ............................................................................................................ 62
Internet .............................................................................................................. 62
Informal sources................................................................................................ 63
Via service providers ......................................................................................... 63
A one-stop shop ................................................................................................ 64
Guidance and support .......................................................................................... 65
Careers advice .................................................................................................. 65
Mentoring or life-coaching ................................................................................. 65
Confidence building........................................................................................... 66
Language support ............................................................................................. 67
CV development and job applications ............................................................... 67
Other support .................................................................................................... 68
Unpaid work/ Volunteering .................................................................................... 68
General voluntary work ..................................................................................... 68
Volunteering in a workplace setting................................................................... 69
Unpaid work placements as part of a training course........................................ 70
Education and training .......................................................................................... 70
Previous educational attainment ....................................................................... 70
Training ............................................................................................................. 71
Guidance on accessing training ........................................................................ 72
Adult Education Centres and courses ............................................................... 73
Open University (OU) ........................................................................................ 74
EXPERIENCE OF SUPPORT TO GET WORK, OR WORK-READY....................... 75
Opening Doors for Carers (Crossroads) Project ................................................... 75
Job Centre Plus (JCP) .......................................................................................... 75
Experience with other agencies ............................................................................ 79
Ingeus / Work Directions ................................................................................... 79
CONSIDERATIONS FOR CHOICE OF EMPLOYMENT FOR CARERS ................. 81
Type of work sought ............................................................................................. 81
Educational assistants ...................................................................................... 81
Counselling and therapeutic roles ..................................................................... 81



Other caring roles.............................................................................................. 82
Professionals..................................................................................................... 83
The ideal employer ............................................................................................... 83
Openness about caring responsibilities and employer response ...................... 84
Local to home.................................................................................................... 85
Part-time post .................................................................................................... 85
Hours and start and finish times ........................................................................ 86
Term-time working in school hours ................................................................... 86
Shift working ..................................................................................................... 86
„Zero hours‟ contracts........................................................................................ 87
Trial or probationary periods or short term contracts ......................................... 87
Flexibility to take time off for crisis events or planned appointments ................. 88
An understanding manager and supportive colleagues .................................... 88
Good organisational and employment policies .................................................. 90
Staff support ...................................................................................................... 91
Home working options....................................................................................... 91
ALTERNATIVES TO DIRECT EMPLOYMENT ........................................................ 93
Agency and locum work........................................................................................ 93
Self-employment as sole trader ............................................................................ 93
Setting up a small business .................................................................................. 94
Home-based contracts for services ...................................................................... 95
Informal economies and creative opportunities .................................................... 95
Social enterprises ................................................................................................. 96
INFORMATION GATHERED FROM EMPLOYERS AND EMPLOYMENT SUPPORT
AGENCIES............................................................................................................... 97
Support for carers seeking employment ............................................................... 97
Job Centre Plus (JCP) ...................................................................................... 97
Ingeus ............................................................................................................... 97
Care through the Millennium - Case Study of Best Practice ............................. 98
Working Neighbourhoods Fund......................................................................... 99
Disability Employment Solutions (Birmingham City Council) ........................... 100
Pertemps People Development Group............................................................ 100
The Learning Hub ........................................................................................... 101
Groundwork West Midlands ............................................................................ 101
Fircroft College of Adult Education and Newman University College .............. 101
Freshwinds ...................................................................................................... 101
ASDA (Barnes Hill).......................................................................................... 102
Support for carers starting self-employment ....................................................... 102



Business Link .................................................................................................. 102
Business Insight - Birmingham Central Library ............................................... 102
Support for carers already in employment .......................................................... 103
Trade Unions................................................................................................... 103
Statutory Employment Rights for Carers ............................................................ 103
Other background information ............................................................................ 104
Carers UK Report – Who Cares Wins ............................................................. 104
Crossroads Report – Juggling Work and Care ................................................ 104
AREAS FOR FUTURE INVESTIGATION AND DEVELOPMENT .......................... 105
Strategic approach to developing carer support ................................................. 105
Networking and information sharing ................................................................... 105
Direct Payments ................................................................................................. 105
Collective approach to developing businesses or home-working opportunities .. 105
Parent-carers of children with Autism Spectrum Disorder .................................. 106
Faith groups ........................................................................................................ 106
APPENDIX 1: OTHER RESEARCH ....................................................................... 107
“Carers‟ aspirations and decisions around work and retirement” Department of
Work and Pensions Report 290 – Summary....................................................... 107
“Employment Support for Carers” - September 2009 ......................................... 110
“Understanding workless people and communities: A literature review” ............. 111
“Provisions for people with strokes in rural communities”, 2009 - The Institute of
Public Policy Research report for the Rural Commission ................................... 111
APPENDIX 2: RECRUITMENT .............................................................................. 112
APPENDIX 3: PARENTS VIEWS COUNT MEETING - GROUP DISCUSSION,
FEBRUARY 2010 ................................................................................................... 113
APPENDIX 4: INTERVIEWEE PROFILES ............................................................. 114
APPENDIX 5: LINES OF ENQUIRY....................................................................... 117
APPENDIX 6: ORGANISATIONS PROMOTING THEMSELVES AS OFFERING
SUPPORT TO CARERS AND PARENT-CARERS ................................................ 119
APPENDIX 7: THE CONSULTANTS ..................................................................... 120
Lesley Pattenson ................................................................................................ 120
Steve Bedser ...................................................................................................... 120



EXECUTIVE SUMMARY
This report highlights the very significant challenges facing a carer as they attempt to
balance their caring responsibilities with employment. The report draws evidence
from a series of interviews conducted with carers from Birmingham in early 2010,
and showcases a number of interventions from a range of agencies. In particular the
report provides evidence that has implications for Birmingham City Council in its
strategic intent to promote the economic well-being of carers, informs the future role
of Crossroads and its Opening Door for Carers project, as well as capturing rich data
that has more general implications for carers‟ services.

Carers are a diverse community, with differing individual needs. As such, there is no
reason to expect that the support needs for a carer seeking work will be any less
complex, and this highlights the need for personalised support packages, sensitive to
the individual circumstances of the carer (and cared for). Our interviews with carers
have already highlighted how, all too often, misjudged interventions can create
barriers for carers seeking to become economically active.

Carers come from a range of socio-economic backgrounds and have differing skills
and experience. However, it is useful to broadly categorise carers seeking work as
follows:

 Carers who have been economically inactive for a considerable time, with little
formal work history and few formal work-related qualifications.
 Carers who have an economically useful skill, qualification or profession, but
have taken a break from working to prioritise caring responsibilities and now
wish to return to the world of work.
 Cares who recognise that their current caring responsibilities prohibit a
conventional employment role, but who wish to be economically active in
some way.
 Carers who are in employment, but who need support to balance their caring
responsibilities alongside their contractual commitments.
 Carers who do not wish to become economically active. For example, some
carers might be at or near to retirement age and do not view employment as
an appropriate option.

Clearly, these categories are neither exhaustive nor mutually exclusive, but it sets a
useful framework for prioritising action to meet the needs of carers.

In the course of our research we identified some common barriers to employment:

 Lack of work related skills
 Lack of work related qualifications
 Lack of formal work experience
 Low confidence/self-esteem
 Onerous caring commitments provided for limited availability for work
 Lack of confidence in the availability, quality and reliability of alternate care
provision



 Inability to prioritise action to return to work above immediacy of caring
responsibilities
 Lack of support and advocacy to guide people back to work
 Lack of access to advice about financial consequences of starting work (in
respect of benefits) and consequential cost of alternate care arrangements

We also looked at the pathway for carers seeking to (re)enter employment and
identified a number of options for them to consider:

 Status Quo – any other options are too challenging or unfeasible with current
caring responsibilities
 Move towards work-readiness through training and personal development
 Gain (additional) work-related qualifications
 Identify potential employers who are able to offer flexible terms and conditions
which match caring responsibilities
 Identify alternate caring arrangements which generate more opportunity for
economic activity
 Identify opportunities for home working
 Identify opportunities for self-employment
 Identify opportunities for volunteering

Our research prompted a series of observations which we have recorded as pathway
pointers. They are highlighted in the text at the relevant part of the report, but for
ease of reference, they are grouped together in broad categories and summarised
below.

Summary of key pathway pointers
General Services for Carers

 Need for better co-ordination
There appears to be a large number of organisations which offer services to
carers, either as part of their core role, as an element of their service provision to
a particular target audience (e.g. BME community associations) or indirectly
through a type of service provision which is beneficial to carers, amongst others.
Consequently there is a complex network of advice, service and support that is
difficult to map and even more difficult to navigate. There is a need for systematic
review that would enable ease of access and cross-referral according to individual
needs, but there is also scope to re-think carer related investment. We pose the
question, is it better to fund (at a relatively low level) a diverse range of
organisations to programme carers into their work stream or is it more effective to
commission a single, carer-focussed service that has diversity at its heart?

In any event, some form of widely accessible directory or database would be a
good place to start, but it needs to be proactively used rather than being a list that
sits on a web page, waiting for the right people to find it.

 Need for specialist expertise
There is an undoubted need for a central repository of information and expert
guidance, specific to carers. This service should recognise the limitations of its



own expertise and be adept at making referrals to other specialist organisations in
other fields where appropriate, but maintain responsibility for the progress of the
individual through regular contact and review. The expert role could be combined
with an advocacy role, championing carers and challenging as a critical friend in
the wider pool of employment related services.

 Protocols to be in place for:
 Sharing and updating information between organisations
 Sign-posting to other agencies
 Referral to other agencies
 Joint briefings and training on carer related issues

 Provision of forums for friendship, mutual support and information
exchange
There is a hierarchy of need amongst the carers we have interviewed that starts
with some very basic issues. Social isolation and lack of confidence are common
factors and tackling these is an early prerequisite if the ambition of economic
activity is to be realised to its full potential. Many carers use such forums as a first
point of access for information. Where such services exist, they need to be better
publicised. Where they do not, they need to be developed.

 Routine referral to Job Centre Plus (JCP) Carers’ Champions
The current policy framework for JCP provides a significant resource for carers
who are contemplating employment, or who are working fewer than 16 hours per
week. Whilst this prioritisation remains in force, routine referral to JCP Carers‟
Champions would seem to be an obvious element of any pathway at an early
stage in the support of any carer meeting these criteria. (JCP cannot support
carers who need advice and support with a caring related issue that affects their
current employment; they can be directed to ACAS [Advisory, Conciliation and
Arbitration Service], CAB [Citizens‟ Advice Bureaux]), trade union or employment
law specialist.

 Tailored, high quality advocacy
Each of the carers we interviewed had their own personal story. If the ambition is
to maximise economic outcomes for the caring population, the skills required to
get the best out of carers as a group will be complex. Services directly concerned
with carers and employment need to engage with each individual carer and rapidly
understand, empathise and advise them, according to their own needs, caring
responsibilities and family circumstances. The service providers will also need to
be able to interface with other agencies and be effective advocates, promoting
high awareness for the complex needs of individuals and the carer population as a
whole. Inevitably, there will be occasions when services fail to match themselves
sufficiently closely to the needs of the individual. In such circumstances there will
be the need for encouragement, support, tenacity and diplomacy. A gold standard
service is required for maximum success.

Opening Doors for Carers (Crossroads)

Instinctively, we are certain that there is an important and pre-eminent role for
Opening Doors for Carers (ODfC) in the process of enabling carers to take up



employment. We observe dedicated, compassionate individuals who make
strenuous effort with very modest resource. Our concern is to make suggestions
which might enable the most effective use of limited capacity and create
opportunities to help more carers in more substantial ways.

 Need for greater awareness of service
Very few of our interviewees had heard of or engaged with ODfC. Where
appropriate, many of them were referred to the service at the end of the interview
process. We have come across numerous occasions where ODfC would be the
obvious agency to link carers into, and we would recommend a systematic review
of how ODfC promotes itself to carers and carer related organisations.

 Potential to be pivotal
It is obvious to us that, suitably visible and sufficiently resourced, ODfC could play
a pivotal role in the pathway for carers, facilitating important outcomes for
individuals. We would recommend a review of the purpose of the service and a
rethink of what elements should be directly provided by ODfC and which should
be sourced from third parties with particular expertise. ODfC should retain an
oversight role to ensure quality of offer and supportive redress when things (often)
don‟t go according to plan.

 Need for redesign (of pathway and function)
There is a need to map the pathway(s) that might enable the transition of carers
towards employment. These will not be linear, and will often require several
strands to operate in parallel. If the pathway could be codified on paper (or as an
e-resource) it would provide a valuable tool for ODfC, their client group and
ancillary services alike. There are two aspects of pathway which operate in
tandem; firstly the steps any individual will need to take to achieve their
aspirations and goals and secondly the sequence of organisations which will need
to be engaged to advise and support them on this journey. ODfC are in a strong
position to provide this support through a personalised case management system
which aims to enable and empower the carer to meet their individual goals.

 Need for greater clarity about purpose and strategic fit
It is our view that if ODfC attempts to provide a total, one stop service, it will not
achieve its full potential in two material ways. Firstly, an all encompassing service
provision would severely limit the number of individuals who could be assisted
within available resources. Secondly, it could compromise the quality of the
service, by operating outside of its core area of expertise. We recommend that
ODfC re-orientate itself away from „doing‟ activity and towards a strategic,
enabling role. It might also be necessary to offer differential levels of services
according to the potential of an individual to achieve and sustain employment.
ODfC might adopt a „triage‟ approach, allowing for the prioritisation of clients with
the most potential for economic activity, signposting others to alternate services,
better matched to their needs.

It occurs to us that the advent of a new worker, combined with the finalisation of
this report, creates an opportunity for a fundamental review of ODfC within a
rigorous business planning framework. This process would need to be supported
by a robust critical friend.



It is relevant to add here that carers have significant support needs not just in
seeking work but in sustaining work too. It is critical that agencies that see
themselves as having a role to play in this field do not exclude carers already in
employment from their remit. We know from our interviews that maintaining work
in the face of conflicting pressure from caring responsibilities is a key concern of
many.

Reality and Sensitivity

 Sensitive direction about aspiration versus reality check
Some carers might aspire to an employment arrangement that might not be
feasible. This could be in terms of type of role, degree of flexibility or level of
remuneration (amongst others). Good advice to carers will include the ability to
sensitively challenge unrealistic expectations and give positive direction to more
credible employment scenarios, or direct them to alternatives such as home-
working, freelance arrangements, informal economies or voluntary work.

 Proper audit and advice about whole household’s financial circumstances
A significant number of carers are in receipt of Carer‟s Allowance and/or some
other form of means tested benefit. Additional complications arise when the cared
for person is in receipt of benefit combined with the consideration of additional
income from other members of the same household. We do not profess to
understand the detail of the issue, but it is readily apparent that, at an early stage,
there is a need to properly audit the income of the entire household, so that carers
can make informed decisions about how many hours to work and what level of
income to aspire to through a „Better off‟ calculation. There may well be
circumstances where the net change in household income is too low to justify a
move to employment (although for many of our interviewees, increased income
was not the most important motivation for seeking work) or, worse still, where the
household income might decline. Careful attention should be given to the cost
consequence of sourcing additional, paid caring support to substitute for the carer
when out at work.

 Develop appropriate ways of talking about the death of the cared for person
(before and after)
In some cases, the death of a cared for person might be the event that makes
employment a feasible option. Whilst recognising the obvious sensitivity of this
issue, it would appear that sometimes, sensitivity may have morphed into
paralysing taboo. There is a need to create a culture that finds appropriate ways
to talk about the death of the cared for person, both in advance and after the
event. To ignore the issue only serves to undermine any progress that a carer
might want to make.

Early Skills Building

 Confidence
The issue of confidence and self-esteem affects carers in a general way and has
the capacity to affect more than just their employment prospects, for example,



securing better services for the cared for person and improving their own mental
health. Many of the services targeted at carers address the confidence need of
their client group either directly or indirectly. It is certain that many carers who
have the potential to be employed exclude that possibility as a consequence of
their low confidence and low self-esteem. Any service seeking to support carers
into employment should recognise this and, in tandem with a service that sets out
to support more motivated individuals who have presented with an aim to seek
employment, set out to build confidence amongst a wider group (possibly targeted
at demographic priority groups) at a pre-employment readiness stage.

 Advocacy
Some of the carers we interviewed identified the dilemmas faced in employment
against a back drop of significant caring responsibility, either as an employee or a
job applicant. There will be occasions when the advocacy of a third party could
materially assist in the negotiation of more flexibility in reaction to changing
circumstances or from the outset of an employment relationship.

Such advocacy also has an important role to play with employment support
organisations that might not have expert knowledge of the issues affecting carers.
It may also be crucial in securing additional or alternative support for the cared for
person in order to release the carer‟s time to pursue training or employment. We
recommend that advocacy is a function central to any service supporting carers in
or into employment.

 Basic information
We identified that there were often crucial gaps in the knowledge of carers about
some very basic issues. In tandem with this, we observed a lack of consistency in
the application of the Carer‟s Assessment and variable experience in following
through the outcomes of any individual assessment whether for themselves, or
the cared for person. It is unlikely that, in the absence of minimum standards of
basic support, a carer would be in a position to seek to make the challenging
transition from full-time caring into some kind of employed role.

 The need to cover the expense of any pre-employment activity
The financial circumstances of carers are often extremely modest. Incurring cost
of any kind, prior to increased income through employment, is likely to create an
insurmountable barrier. Carers need to be supported to identify ways in which any
pre-employment expenses are met. We have evidence that some carers have
realistic (in terms of their ability and potential) aspirations to obtain qualifications
that would secure employment (e.g. NVQ Level 3 to become a classroom
assistant) but lack the resources to complete the courses that would achieve such
qualifications.

Given that such courses cost hundreds, rather than thousands of pounds, we see
the potential to pilot a scheme that gives affordable, interest-free loans to carers
that can be paid back in a manageable way once in employment. Such a scheme
should have relatively strict criteria to ensure mutual success. The provision of a
loan should be contingent on a realistic assessment of a likely successful outcome
and, perhaps, should be targeted to demographic groups where the achievement
of employment would be more likely.



Employment

 Need to identify flexible employers
The carers we interviewed reported a hesitance to disclose their caring
responsibilities during the process of recruitment, fearing that they might be
discriminated against, with one interviewee citing actual examples of such
discrimination taking place. There is the potential, through a systematic piece of
work, to identify (perhaps larger) employers that have the capacity to
accommodate the flexibility sometimes required by working carers1.

A number of potential flexible schemes were identified ranging from zero hours
contracts, term-time working, trial periods, late starts, condensed weeks (full-time
hours in four working days), opportunities to catch up missed time by varying
hours or taking some work home. Actively promoting examples of good practice
would give carers the confidence to apply to those employers, safe in the
knowledge that some level of awareness already existed in the employing
organisation.

 Opportunity to develop good practice check list
In tandem with the above, we think that a good practice check list should be
developed, so that employers have a clear understanding of the potential needs of
their employees. The ability to promote good practice would be helpful in
removing the pressures from a carer who faced the need for support from their
employer at the moment of crisis. Transparent policies and procedures, already in
place, would greatly assist both employer and employee, as well as enabling the
carer to make an informed judgement about the suitability of an employer at the
pre-employment stage.

 Potential to develop an Employers Index, based on Stonewall model
We note the success of the Stonewall Diversity Index, which has transformed the
workplace environment for LGBT (lesbian, gay, bisexual and transgendered)
employees over a few short years. Blue chip companies and other major
employers now compete for the accolade of being ranked in the top 100
employers. We see the potential for a similar scheme to transform the work
prospects of carers either, in a modest way within the Birmingham economy, or, to
greater effect, through the stimulation of a national model, perhaps in partnership
with a national carers‟ organisation.

 Ensure CERS (Carers Emergency Response Service) registration early on
It is readily apparent that CERS offers a robust service that provides very
significant support to carers and could ease the fears of those in or contemplating
employment. Not all of the carers that we talked to were aware of, or registered
with the service. We recommend that this should be considered at an early stage
of any individual pathway. We would also suggest a review of eligibility for support
to extend the circumstances in which support was provided so that short-term
cover where the carer is suddenly incapacitated at home could also be offered.

1
We have been advised that the terms of the European Union Working Time Directive allow a degree of flexibility
which may help accommodate the needs of carers; some employers may not be aware of this.



Other factors affecting employment prospects

Caring responsibilities often run alongside other factors that affect the employment
prospects of an individual. This generates additional complexity that should be taken
into account. Such factors include:

 Lone parenting
A number of the interviewees were single parents. While presenting further
challenges for the carer wanting to work, additional routes to support into
employment may also be open to these carers as a result of their lone parent
status, and these should be exploited where they exist.

 Disability
Similarly, disability may impose both restrictions and opportunities through any
training or employment support initiatives targeted at people with disabilities;
many of the interviewees had significant health problems of their own.

 Childhood transition
In particular, for carers of children, we recommend that in parallel with
assessments for childhood transition of the cared for, a separate assessment is
made of the needs of the carer. Childhood transition is a critical juncture that will
have impact on the employment prospects of a carer. For some, it will make
seeking employment more feasible if caring responsibilities can be reduced
through the young adult securing more independence through college or work
themselves. For others it will make sustaining employment more challenging, with
the imminent withdrawal of schooling (and by implication respite time for the
carer). For yet others, it could generate novel opportunities. For example, we see
the potential to develop the concept of dual employment for parent and cared for
young adult. Many of the parents we talked to had responsibility for an autistic
child. We can envisage circumstances that would create meaningful employment
for both parent and child with the merit of the parent being on hand in the same
workplace in the event of unpredicted emergency. Assessment and advice on the
implications and potential for the carer should therefore be integrated into the
childhood transition support package.

Creative Pathways and Outcomes

 Not a straight line – some things need to happen in parallel
It should not come as a surprise that, given the complexity of individual caring
situations, a linear design of a pathway into work would be inappropriate. Different
people will need different interventions, at different times. It will not be unusual for
a carer to benefit from several different strands of support at the same time.

 Sometimes employment is not the appropriate outcome and carers may
benefit from sign posting into other directions
There will undoubtedly be occasions where a carer might present seeking
employment but, upon closer inspection, employment might not be the appropriate
outcome. It should be the goal of supporting organisations to empower the carer
to identify the most suitable outcome for themselves and to signpost accordingly.
To attain work, a period of study may be required, or it may be more appropriate



to establish self-employment. There is the potential for this to conflict with some
employment support agencies if they are rewarded on the basis of job outcomes.
Expert agencies, such as ODfC need to be vigilant that carers are not overly
directed into work and seek to rectify the commissioning environment if the
commissioning structure works against the best interests of carers.

 Early and frequent review will ensure ongoing success and provide a
structured, supportive framework
We frequently came across individuals who were highly motivated to seek work,
but, by their own estimation, were easily knocked off track by the day-to-day
reality of their caring responsibilities. Carers seeking employment need early and
frequent review in the context of a supportive coaching and mentoring relationship
with a third party. This creates the potential for realistic goal setting and ongoing
encouragement to make progress towards work by organising this support
through a casework management system.

Other Best Practice Issues

A number of issues were identified in the course of the study which fall outside the
scope of any pathway supporting carers in or into work, but which would benefit from
the attention of relevant service providers and commissioners.

 Developing awareness of carers‟ issues and services within BME community
specific services.
 Particular complex and challenging needs of carers who are asylum seekers
and refugees as well as migrant European nationals who may experience
cultural and/or linguistic barriers as well unfamiliarity with national and local
systems and structures.
 Particular complex and challenging needs of carers who have English as a
second (or third) language.
 Lack of a consistent approach to Carer‟s Assessment and subsequent follow-
up.
 Variable experience of Direct Payments. Many carers told us about negative
experiences generating a significant level of mistrust. However, we also
recorded some extremely positive examples of how Direct Payments have
benefitted carers and cared for alike. There is potential for carers to be
recruited to deliver paid care to others through the scheme
 Sustainable alternate caring arrangements. This is a dominant issue that
dramatically constrains the ability of carers to make regular commitments
outside of their caring role. In particular, we noted the impact of closures of
day centres on carers of adults, and the increased caring responsibility for
parent-carers during school holidays. A more systematic and concerted effort
to provide holiday schemes for children with special needs would widen the
employment opportunities for their parents.



INTRODUCTION AND BACKGROUND

The commission brief

This report was commissioned jointly by Birmingham City Council and Birmingham
and Solihull Crossroads Care in late 2009. We (Lesley Pattenson and Steve Bedser)
were appointed and work started in January 2010. A prime objective of the report
was to gain „a clear understanding from the carers‟ perspective of what carers need
in order to get back to work, highlighting barriers‟. We were also asked to map
services already in place to help carers; identify support systems that need to be put
in place; gather employers‟ perceptions of employing carers and be aware of best
practice in supporting carers into employment, both locally and nationally.

The report also builds upon and significantly expands some of the themes identified
in the tender documentation; specifically a briefing report prepared for the Service
Director for Policy Strategy and Commissioning.

In subsequent Steering Group meetings we were asked to concentrate on the carers‟
perspective and the breadth of our research changed to accommodate the different
emphasis that Job Centre Plus had placed on carers in December 2009.

Pre-existing research

A web search revealed a number of related studies undertaken by the Department of
Work and Pensions (DWP), but there appears to have been little focus by other
agencies on supporting carers or recent carers back to work.

The most comprehensive is a detailed qualitative survey undertaken by the
University of York for the DWP2. This study covered broadly the same areas as this
study, plus retirement plans, but did not explore in as much depth, the sort of support
which would help people return to or stay in work. The work was undertaken in 2004
and published in 2005, prior to, but perhaps contributing to, the development of the
Government‟s National Carers‟ Strategy. Their key findings were very consistent with
the ones found in this study. Two other studies also drew very similar conclusions.
Summaries of the reports mentioned are reproduced in Appendix 1.

The research methodology

The carers‟ experience

A qualitative research methodology was adopted in which a cohort of carers was
identified and interviewed in order to identify and explore carers‟ experience in all
aspects of their lives which impacted upon their ability to obtain or retain work.

2
Report no. 290 “Carers‟ aspirations and decisions around work and retirement”, Hilary Arksey, Peter Kemp,
Caroline Glendinning, Inna Kotchetkova and Rosemary Tozer, 2005, ISBN 1 84123 896 1
http://research.dwp.gov.uk/asd/asd5/report_abstracts/rr_abstracts/rra_290.asp



Recruiting participants

Participants were recruited through a variety of carer related organisations, services
or networks. We made direct contact with a number of organisations including carer
projects supported by Birmingham City Council (BCC) and attended a number of
meetings to present the study, seek support from participants and in some cases,
make direct contact with carers. (See details of recruitment process in Appendix 2)

While it had been anticipated that some sources would lead to multiple potential
participants, who could be brought together in a focus group in a familiar setting, this
did not materialise. (However, we were present at a meeting organised by Parents
Views Count, at which a break-out group discussed „employment, experience and
expectations‟, from the perspective of the parents/ carers. The bullet points charted
reflect many of the themes explored in more depth within this report, and can be
found in Appendix 3.)

Effort was therefore concentrated on securing support for individual interviews. The
relatively small numbers coming forward who met the criteria for the study may be
indicate that large numbers of carers are not actively interested in returning to work,
or it may simply mean that they were not interested in taking part in the study, for
which no material recompense other than travel expenses was offered.

The research focus was always intended to be qualitative, with the intention of
covering a spread of experience. However there was no attempt at random or other
type of sampling to recruit interviewees, so the spread was achieved by targeting
certain agencies, in particular to fill gaps. The spread across type of carer, working
or not, ethnic and faith background and area of residence is impressive as follows.

Characteristics of the cohort of participants

27 carers and recent carers were recruited to the study. 10 were working in either full
or part-time posts or in self-employment and the remainder were interested in
seeking work. Some had only recently ceased their last job, others had not worked
for over 30 years.

Participants were from a wide spread of areas across Birmingham, having postcodes
as follows: B3 x2, B8 x2, B10, B12, B13 x2, B16 x2, B17, B18, B19, B20 x2, B21 x2,
B24, B26, B27, B31 x2, B32, B72, B74, B75

The gender breakdown of 22 women and 5 men reflects the gender imbalance
amongst carers in general so the relative infrequency of male participants was to be
expected.

There is a predominance of participants in older age brackets with some coming up
to, or past normal retirement age: 30-39 x6, 40-49 x6, 50-59 x10, 60-69 x3, 70-79 x2

Targeted approaches through a number of channels failed to recruit a carer in the
age range 18-293. (Although this is a deficit in the cohort, it should be noted that

3
The study did not attempt to recruit carers still at school since they are accessible and supported through
existing routes including usual support for further education, training and employment



several participants had started caring while still at school and their experiences are
reflected in the report.) This suggests that younger carers are either accessing
training and employment support through the many channels that already target this
age range, and/or they are less likely to be connected into the various carer support
networks and agencies which led to the recruitment of many of our cohort.

Half (13) of the participants had some disability, illness or condition which potentially
restricted or impacted the nature of potential work they could undertake. While this
seems high, bear in mind the skew to older age groups.

In terms of self-defined ethnicity, nationality and faith group, there was a good
reflection of diversity, with 18 White, 3 African, 3 Asian, I Chinese, 1 Caribbean, 1
mixed heritage; 21 being British and the others having nationalities or dual
nationalities including four from European countries and one from Hong Kong. There
were 6 Muslims (2 converts); I Sikh, I Baha‟i, I spiritualist, I non-believer and 17
Christians including 12 Church of England, 2 Methodist, 1 Roman Catholic, 1
Pentecostal and 1 not stated.

Seven of the participants were currently caring for more than one person and
virtually all the interviewees had substantial caring responsibilities in terms of hours
and the level of support needed by the cared for person(s). All but one lived in the
same household as the main cared for person.

Of 16 parent-carers, 6 cared for 1 child, 3 cared for 2 children, 3 cared for adult
children, one cared for child and partner, 2 also cared for an older relative and 1 was
a parent-carer of both an adult and children as well as siblings; 7 cared for partners
(2 deceased; one same-sex), 5 for parents (2 deceased). In addition, several parent-
carers had also cared for additional relatives in the past, mostly deceased parents.

Interviews

All interviewees selected an alias to protect their identity and signed a consent form
for use of the material. Appendix 4 gives a brief pen portrait of each interviewee.
Information was collected using a loosely-structured interview on a one-to-one basis
either in person or over the telephone. All interviews were recorded bar one.

The broad areas covered in the interviews included:
 Personal and family background
 Details about the cared for, and the caring role and responsibilities of the carer
 Support services, paid care, Carers‟ Assessments and Direct Payments
 Work history and aspirations
 Training, education, voluntary work
 Steps taken, if any, to progress to paid work or remaining in work
 Barriers to work, sources of information, aids to starting or remaining in work
 Financial issues, benefits advice, professional support
 Informal support networks and sources including family, friends and faith groups
 Awareness and experience of key sources of support including Carers‟ Centre,
Opening Doors for Carers and Job Centre Plus
 Experience of work, good and bad employment practice or innovative and creative
approaches by carers and employers



See Appendix 5 for question prompt maps elaborating potential lines of enquiry. 4

Findings and analysis

During the research process, emerging themes were fed back to a selected group of
users and stakeholders, who confirmed that our findings reflected the general
direction of their expectations and experience.

The main findings from the research are sequenced in the remainder of the report.
Many of the findings and recommendations are drawn from or illustrated by direct
quotes from interviewees. Implications from the findings are extracted as „pathway
pointers‟ which include a number of more general messages to come out from the
research. Inevitably, in establishing issues for informal carers, many factors relating
to the statutory or funded care of the cared for person, (or more often, the lack of it),
also emerged. Where relevant they are highlighted in this report, as inadequacies in
formal care are a major barrier to carers being able to undertake a work role.5

The first section of the findings relates to the personal characteristics of the carers,
their family circumstances and their caring responsibilities, and as such cannot be
influenced by the pathway. However, such factors may be useful in determining
types of carer who should be targeted or prioritised, or who need additional specialist
or specific input to complement the general pathway.

The second section looks at a range of factors which help or hinder a return to work,
including attitudes to caring, motivation for working, financial impact, existing and
alternative care arrangements, and formal and informal support for the carers.

The third section looks at moving towards work readiness including through
volunteering, training and education. It identifies the sources of support and
information on returning to work known to or accessed by the carers and their
experiences, good and bad, of using them.

The fourth section looks at considerations of choice of employment and alternatives
to direct employment. This includes the experience of carers in seeking work and
those in, or recently in work, and highlights good and bad practice exhibited by
employers.

Employers and employer support agencies

To complement the direct interviews with carers, a series of meetings was held, in
person and by telephone, with a wide range of agencies concerned with employment
and employment training. In addition, contact was made with employers and other
third parties with an interest in employment circumstances (e.g. trade unions). The
outcome of this research is summarised in the final section of the report.

4
Not all areas were covered depending on whether relevant to the carer‟s life circumstances.
5
In particular, a significant section on Direct Payments is included because they offer huge potential to release
carers so that they can work.



THE CARERS‟ RESPONSIBILITIES AND IMPLICATIONS FOR WORK

Caring responsibilities
By definition, a carer‟s immediate restriction on work is the responsibility of caring for
another person. There are therefore implications for work depending on who the
cared for person is, what their needs are and what the demands may be in the
future.

A distinction can be made between those with ongoing indefinite caring
responsibilities e.g. those caring for someone with a chronic but not terminal
condition or an adult child with special needs, those where the role may alter (e.g.
parents of children as they get older) and those who will inevitably experience a
cessation of their caring responsibilities, where the cared-for person is a terminally ill
partner, or an elderly parent. (e.g. Following her mother‟s death, one ex-carer was
now seeking work for the first time in over three decades.) Although potentially with
the highest possibility of returning to paid employment, such carers may be reluctant
to plan for life following bereavement and though referred to cautiously by some, it
was not explicitly explored due to the sensitivity of the topic.

Some transitions can be accurately anticipated (e.g. child leaving school) and
planned for in terms of the carer returning to work, and others (death) are a little
more unpredictable in terms of time-scale.

Pathway pointer
 In exploring potential for paid work, there is a need for a range of options and
solutions for carers each of whom is individual with a unique set of circumstances,
constraints, skills and aspirations and each of whom needs a tailor made support
pathway.

Parent-carers of children under 18

Some conditions are apparent from birth or diagnosed pre-school, others manifest in
problems which may not be diagnosed for years, often leaving parents „in limbo‟, not
knowing what is wrong, unable to make plans and possibly unable to access formal
support.

“In the early stages, after my son was diagnosed, I didn‟t know how he was going to be from
one day to the next, so to be able to commit yourself to a job would have been extremely
difficult, it really would. I couldn‟t have contemplated having a job because of not just his
care needs, but the emotional strain of dealing with it.” Laura

Pathway pointer
 It may be unrealistic to expect parent-carers of children to work in the early stages
of recognising, understanding and adjusting to caring for a sick or disabled child or
one with other special needs, whose priority will be getting the correct services
and support in place for their child.



While children are at school, there are hours in the day when the carer could
potentially work, but this is also the only time they may have to themselves, to
undertake leisure activities, go to support groups or undertake domestic
responsibilities that they cannot do when their children are back home.

“Some carers of older people seem to think that parent-carers aren‟t carers like they are,
because you have to care for your children anyway, so [caring for your children] was a bit
devalued. They go to school so your respite is when they are at school, regardless of the
fact that you might have to spend the whole night awake with them.” Laura

Transition to adulthood

This transition to adulthood may present new possibilities for their parent(s) to work.
When a child leaves school there are various options – going to college, into work,
day-care in an adult facility, supported living away from home, a residential setting,
or simply staying at home 24/7. Some carers saw the transition following the end of
schooldays as a positive step for the child to develop alternative support and
potentially independent living, giving them the opportunity to return to or extend paid
work, albeit recognising that they would still have to be in a job that allowed them to
respond to the needs of their child if needed.

Vera has a teenage son with autism whose needs are currently preventing her from working.
“I‟m hoping he will go to university, whether he would cope or not, I don‟t know. I hope he will
increasingly become more independent and take it from there. I‟ve got a friend with a
daughter at university, she still has to be ready, she can‟t switch off. Again, it limits the kind
of job you can do, I definitely can‟t go back to teaching unless it was very few hours.”

Other carers saw it as a time of greater dependency as, without school providing a
break, or the prospect of any viable alternative which they could imagine, they
presumed they would become full-time carers for their adult child living at home,
indefinitely.

Yee doesn‟t know what will happen in three years time when her son, who has learning
disabilities, has to leave school at 19. She thought she might in fact need to be at home
even more for him.

“You can‟t go out at 9a.m. to get to work, you could do a year ago because he was at school
but you can‟t now, once you get into the adult system it‟s a nightmare, but hopefully, these
younger parents won‟t put up with it, because they‟ll be asking for Direct Payments,”
Margaret

Parent-carers of children still in school are a more accessible group than many other
carers, since they can be reached via schools which obviously know which children
are statemented/have additional support. The Council already provides transitional
support using a recently developed „Transition Pathway‟ tool 6 to review options for
the child from around the age of 14, but this focuses on the child‟s needs and does
not specifically include any consideration of the opportunities presented for the carer.
This is a missed opportunity to encourage carers to start planning how to maximise
this potential by for example, starting a two or three year training course at day

6
Kate Race, Transition Development Co-ordinator, Birmingham City Council – kate.race@birmingham.gov.uk



classes, or remote learning opportunities such as the Open University (OU), on-line,
part-time or correspondence courses in readiness for future work.

However, it must be remembered that the best laid plans are subject to the ongoing
and changing needs of the cared for person.

Mary‟s son started at a specialist education college “I assumed I would have more time to
complete my studies, get a placement and accreditation and a part-time job, but
unfortunately it doesn‟t seem to be working out at college either.”

When Ellie‟s son left school he went to college for 2 years but it was way beyond him and he
had six months off during this period due to illness when she had to care for him 24/7.

Pathway pointer
 Childhood transition support services need to be linked into the carers‟ pathway,
and include specific identification of carer aspirations and sign-posting onto
support to help them explore opportunities to return to or extend work if desired.

Parent-carers of adult children

Unless the adult child has a terminal condition, this is often a static situation, with
anticipated years of caring ahead and no foreseeable change in caring
responsibilities.

Ellie, 52, has a 27 year old son with severe learning difficulties, She cannot see any changes
in the care or support her son will need in the foreseeable future and as her husband has no
intention of retiring, her commitments to her son, which are her priority, are likely to continue
for many years to come, potentially way past her own retirement age. She hasn‟t worked or
had any training in 30 years yet would love to work. The only solution she can see is to
access training to develop computer skills e.g. in web design or desk-top publishing, which
she could use to work from home.

Louise cares for her daughter who she hopes will go to a college for people with special
needs when she is 16 in 2 years time, but beyond that Louise is uncertain what the future
will hold and anticipates that she is likely to remain living at home.
Louise also supports her elderly mother who lives locally and whom she sees most days,
helping her with hospital visits and general support. As an only child any future additional
support her mother needs will fall to Louise to provide. Her husband is due to retire in 5
years time and could offer more support but by then Louise will be in her mid-50s. She would
nevertheless love to do some part-time work.

Pathway pointer
 If a carer aspires to return to paid work, opportunities and support needs to be
designed round the limitations and demands of this ongoing caring role or
reducing the need for the carer to provide support. (See formal and alternative
care arrangements).



Carers of partners

Most of the partners cared for had a condition with an onset later in life so the carer
had already had considerable work experience, which they could then adapt. As
they had become the sole breadwinner, most of these in the cohort had found ways
to maintain the family income while also providing significant care for their partner.

Pathway pointer
 Such carers may be reasonably well qualified and experienced plus be highly
motivated to maintain work and so a relatively small input of support may generate
a high proportion of positive outcomes.

Carers of parents or other older relative

Some carers had picked up the care of their parent, aunt, or grandparent as the
rigours of age had affected them, but notably, several had also had lifelong caring
responsibilities where a parent had had mental health problems.

Maxine‟s mother had paranoid schizophrenia since before Maxine was born; Maxine cared
for her mother (and younger siblings) from the age of 9, 40 years in all until her death a few
months ago. For the past 20 years Maxine has been the sole carer, looking after her mother
every day as well as looking after her own family. Her mother developed early dementia,
then had a stroke 6 years ago and needed 24 hour care so she moved into Maxine‟s home.
Maxine could not consider work before her mother died because she was caring full-time
from 6 – 2a.m. daily. “It would have been impossible but now I really want to do something.”

Planning for and following death of cared for person

This is a very sensitive subject, which both the cared for and carer may be very
reluctant to talk about, being particularly careful not to let the cared for person know
they are taking steps to prepare for life after their death7. The national organisation
„Caring with confidence‟ runs programmes for carers in Birmingham8. Although it
includes sessions on how caring fits with other aspects of life, and on maximising
income, this does not appear to go as far as how to seek paid work. Furthermore,
the course includes an optional extension to the programme with an additional five
sessions for carers of people nearing end of life‟ but doesn‟t appear to specifically
look at support and planning for carers to flag up the possibility of looking at training
or other development activities in preparation for return to work.

Pathway pointers
 An opportunity for planning for life after the cared for‟s death should be available if
requested, but perhaps not promoted too actively except in the context of an in-
depth personal review where appropriate sensitivity and support can be applied.
 Omega, who developed „Caring with confidence‟ and have the expertise in
delivering successful training courses for carers, could be encouraged to develop
an optional programme extension for carers wanting to return to paid work.

7
Conversation with provider of the courses
8
, Omega, the National Association for End of Life Care, 0800 849 2349



“Now, my mum‟s died, they‟ve offered me to go to CRUSE, but I don‟t need that, I go to see
my mum at the cemetery twice a week, but I would like to work. I know some people leave it
a year or two after someone‟s died, but I want to get back, I want to do something. “I was on
Carer‟s Allowance and I expected it to stop after my mum died, but they sent me a letter to
say that I could have the Carer‟s Allowance for two months; that they didn‟t expect you to go
and look for a job straight away, but no-one‟s been in touch to say, „Your mum‟s died now,
would you like some sort of help?‟ I‟m not on any benefits now, and I‟m just forgotten about.
There must be quite a few people like that, when the caring comes to an end, we don‟t really
get support, whereas if you‟ve been signing on for 12 months they say, „Would you like to go
on this training course?‟ and encourage you.” Maxine

Pathway pointer
 After the death of a known for cared person, a referral to Opening Doors or to
another co-ordinating group could be generated (in conjunction with the DWP)
which could check whether the ex-carer needed any help, and sensitively offer to
signpost to financial review, counselling or support, training, work review etc. This
offer should be wider than just a pathway to work, but could link to the Job Centre
Plus as a conduit, regardless of whether the person was signing on as
unemployed or seeking benefits.

Multiple caring roles

The opportunities are even more limited for carers whose caring responsibilities are
for several people, particularly where they are of different generations.

Mary cared for her late mother since her schooldays, has looked after several terminally ill
siblings and three children with special needs, the youngest of whom are now approaching
adulthood. She has nevertheless been studying hard in order to fulfil her aspiration of paid
employment in a few years. “I‟ve had a very long term plan for some time really, my life, my
movement in life has been very much determined by caring responsibilities, and I‟m not
complaining but it sometimes alarms me. It‟s always overshadowed by having very lofty
responsibilities at home and that‟s what dictates my moving into work”.



DIVERSITY AND PERSONAL CHARACTERISTICS OF THE CARER
AND THE IMPLICATIONS FOR WORK

Gender

The participants interviewed were predominantly women, reflecting the gender
balance of carers in the community. The men were mostly caring for a partner or
parent. Being the main carer of a child remained women‟s role in the cohort.

Yee thinks that her husband would approve of her trying to get paid work so long as she was
available to take care of her son; they see her primary role as that of mother and carer.

Asked whether her husband would be supportive if she said she wanted to prioritise going
back into paid work Shazia said: “He‟s not really interested so long as his dinner is on the
table when he comes home from work.” So long as she fulfils her responsibilities as wife,
mother and carer, although he wouldn‟t be particularly supportive he wouldn‟t block it either.

This was quite a common response; so long as it didn‟t affect their lives, men were
reported as not caring whether their wives worked or not. Equally they may not
understand the barriers and reasons why their partners are not making progress
obtaining work.

“My husband has a male outlook on things – he can‟t understand why I just don‟t get on with
it, he doesn‟t appreciate all the stress surrounding it, he thinks a good idea if I just got on
with it”. Vera

Pathway pointer
 Female carers in common with non-carers need the support of their family if they
want to go out to work. Additional support in securing this may be helpful.

Partnership status

Quite a lot of the interviewees who had partners stayed at home as full-time carers.
The need to maintain the role of bread-winner mitigates against partners being able
to share care or even to offer crisis care in an emergency, which in turn impacts on
the work prospects of the primary carer. (By definition, those caring for a partner did
not have the option of their assistance).

Christine‟s eldest son had a combination of communication and behavioural problems from
an early age. His nursery frequently called her to fetch him early. “Me and my husband took
it in turns to go and fetch him. We were both called into the office by our companies, and told
„you‟re going to have to do something about this‟. In the end, because he was the main
bread winner, we took the decision that I had to give up my job.”

My husband is in a position to continue working full-time for the foreseeable future and
wishes to do so. He‟s supportive in emotional terms but can‟t help in practice in the event of
a crisis with our son during the day as he is at work.” Ellie



Pathway pointer
 Families are likely to prioritise safeguarding the employment of the higher earner,
often resulting in the primary caring role falling to the woman even where there
are good intentions of shared caring.

Many carers reported that their partners were supportive in emotional terms, and
some also played a practical role in caring as well.

“My husband used to look after my mum a lot as well, he was excellent, he‟d finish work, or
because he‟s got his own business, sometimes he‟d not go in till 12, he‟s quite flexible, so he
looked after her.” Maxine

However, some partners were reported as playing no role at all in caring for their
child although they were financially supporting their partner so they could be the
primary carer.

Lone parents/ carers

In contrast, there were a number of single female carers who were surviving on
benefits sometimes topped up with very low paid part-time work. Many of these were
single parents of young or adult children with special needs. The lack of support at
home was a significant constraint on their ability to work. This also applied to single
people caring for parents.

Pathway pointers
 Carers with supportive partners who were able to share some of the caring role
could be more likely to be able realistically to seek or sustain work.
 Where there is a partner supporting the family the financial imperative to work was
often secondary to the carer‟s desire to „get out of the house‟ and do something
other than be a carer. Single people put a higher emphasis on the need for
money. (See also motivation to work)
 Some „back to work‟ programmes are targeted at single parents. The pathway
needs to identify which carers also fit this category as it may open up additional or
alternative support opportunities for them.

Relationship breakdown

The strains of caring for someone within the family can also place immense and
sometimes irretrievable pressures on relationships. Several carers reported
temporary or permanent breakups because of it.

To try to juggle both caring and working, Christine‟s husband “Also changed his job to try to
accommodate our life, but we were like ships in the night, when I came home he‟d go to
work, so we were never able to sit and talk through our problems, or have a nice time
together. Our oldest was very very demanding. The combination of anxieties about my son
along with the problems at work all got so stressful at home that my husband and I
separated for a while.” They later sorted out their problems and had their second child (who
also turned out to have special needs).



Pathway pointer
 Employability will not be enhanced by avoidable strains on relationships, so the
pathway needs to help people look at the whole situation including work-life
balance, additional support available, and the knock-on effect of training or
working on the whole family.

Residency in relation to the cared-for person

Virtually all the carers interviewed lived in the same household as the person they
were caring for; one that didn‟t recognise that a change in living arrangements might
soon be needed. This could suggest that there is a greater limitation on work for co-
residents than those living independently from the cared for person, since only one
has appeared in the cohort.

Age

The age of the carer was not necessarily an indicator of the person they were caring
for or of their desire to return to or remain in paid work. Several older carers currently
working expressed a need to remain in work as long as possible for financial
reasons. However, where carers were not in work but were nearing the end of what
is usually considered to be „working age‟ then realistically their chances of returning
to work may be lower than those of younger carers. Conversely, carers who have
been caring since their schooldays may have accrued little work experience and
need additional support to get them onto the pathway to work.

Sharina, 36, cares for her son with ASD (Autism Spectrum Disorder) and her visually
impaired aunt. She has been caring continuously since the age of 9, when her father died
and she took on the main responsibility for looking after her older severely handicapped
brother. She missed a lot of school and was frequently investigated by truancy officers even
though they knew the situation at home. She was offered absolutely no help as a young
carer by the school or social services. Her education suffered badly as a result.

Pathway pointers
 The pathway may need to help older carers look for self-generating schemes of
paid income, identify employers sympathetic to older employees and promote
non-paying alternatives providing stimulating and rewarding activities outside the
home and caring role.
 The pathway may need to consider the pros and cons of supporting younger
carers inexperienced in working but with many potential years ahead of wage
earning, against resources invested in getting older carers who may be better
qualified and skilled to get back to work for a shorter period.

Disability (of carer)

Although not a quantitative survey, it was noticeable that half the carers in the cohort
reported disabling conditions themselves ranging through bad backs, depression,
asthma, arthritis, diabetes, autism, to complications following surgery. Some of these
conditions in themselves presented limitations to seeking or maintaining
employment.



Several of the carers approached during the recruitment process who were
discounted because they did not meet the criteria of seeking work, said that this was
because they were disabled themselves.

Pathway pointer
 Some „back to work‟ programmes are targeted at disabled people. The pathway
needs to identify which carers also fit this category as it may open up additional or
alternative support opportunities for them.

Sexual orientation

One participant was openly gay; sexual identity was not explicitly asked for but most
of the rest of the cohort were in or had had heterosexual relationships.

Alastair cares for his male partner. Since he worked for an agency providing services to gay
men, his sexual orientation was not an issue for him in his workplace. “It‟s totally unique, I‟m
very privileged, I don‟t know what it would be like if I was in a public sector or blue chip
organisation whether there would be potential discrimination, it might not be an issue at all
but it‟s something I‟ve not even had to think about here.”

However, the majority of gay, lesbian or bisexual (LGB) carers seeking or working in
other work environments, who are not already out, potentially face having to „out‟
themselves by explaining the nature and significance of their relationship to the
cared for person, in order to also explain the implications of their caring role on their
work, and this creates a situation of „double jeopardy‟.

Pathway pointer
 Additional support, guidance, advocacy or referrals may be needed for lesbian
and gay carers in this situation, as well as, where available, access to other LGB
carers. 9

Ethnicity and country of origin

As well as white, black, Asian and mixed heritage British participants the cohort
included people from European, Irish, African, and Chinese ethnic groups who had
moved to the UK. Other than any pre-existing barriers or restrictions experienced by
some ethnic groups seeking work in common with non-carers, ethnicity did not seem
to impact other than through its associations with culture or language.

Two carers were identified through direct approaches to cultural support
organisations (Chinese and Somali). Three more relatively recent migrants emerged
through the wider recruitment processes. Three of the five carers concerned had
arrived in this country with the special care and support needs of the cared for
person already diagnosed.

9
This work should therefore be considered in conjunction with the contemporaneous study of lesbian, gay,
bisexual and transgendered carers by the LGBT Consortium for Birmingham City Council, completion expected
summer 2010.



A unifying feature of this group was very inadequate information about basic services
and support for the cared for person, themselves as carers or indeed any other
support they could access e.g. for their other children. Several had floundered since
arrival and although all had had limited contact with statutory services they appeared
to have been very poorly served.

Amie arrived in Birmingham in 2004 from Africa via another European Union country with her
6 year old son with behavioural problems. She said that when she first came to England she
didn‟t realise she could get childcare (but her English [as her third language] was very poor)
and contextually she most likely meant child benefit. Many of the things she said in her
interview reflected that she was relatively new to the country and had not yet recognised or
found her way around all the different systems and services.

Anna, whose husband had a stroke two days before the birth of their first child, said “When
the visa came up, we had a legal representative who did the paperwork and fought for us, I
wouldn‟t have known how to deal with it, but that was via friends, not via services. The good
thing was that before his stroke, my husband was working with the Pensions Service and
afterwards his line manager contacted me and told me about child benefits and child tax
credits because I didn‟t have a clue.”

Pathway pointers
 In establishing an effective pathway, close links need to be developed with
immigration, asylum seeker, refugee, cultural and new communities support
services and groups, to ensure that there are links to general carer support
organisations and specifically into the carers and work pathway.10
 It should not be assumed that people, particularly those who are new to this
country, understand about different agencies and extra help may be needed to
clarify the different organisations involved. (This is good practice regardless of
language or length of residence.)

Language

Problems in accessing support and information are obviously exacerbated where
English is not well spoken or understood.

Both the Chinese and Somali interviews were conducted through interpreters
because these carers were not yet competent in English. The latter was working in a
job which required little communication. There are obvious limitations on the scope
of work available which is conducted in languages other than English, particularly in
the smaller minority groups, and may be exacerbated by an absence of a culturally
based commercial infrastructure and a cultural lack of acceptance of carers‟ needs.

Because of her lack of English language Yee agreed that work would have to be with the
Chinese community and that she would look for jobs in China town, with Chinese
businesses, or supermarkets. However, in a catch 22 situation she feels that the Chinese
culture doesn‟t yet appreciate or recognise the needs of carers. So, while she feels she is
limited to Chinese businesses because of the language, she also believes that Chinese

10
If the pathway is set up correctly, it should in turn signpost sideways when other information and support needs
come to light.



businesses would not employ her because she is a carer and could not understand or
accept that she has to put the needs of her son as her first priority.

Pathway pointers
 When English is not the first or even second language, service providers need to
be very careful that information provided has been clearly understood, and if
necessary provide extra help or advocacy to support them in accessing it.
 Direction to appropriate language support or ESOL classes (English for Speakers
of Other Languages) will be an important part of the pathway for people whose
first language is not English. In turn, providers of ESOL and related courses need
to understand the limitations on carers in terms of timing, availability, absenteeism
and cancellation at short notice etc.
 Alternative means of delivering language support such as befrienders and
communication practice volunteers who can work with carers at home, on line or
on the phone may need to be explored. Other carers might themselves be able to
be matched up to fulfil these roles.

Faith and culture

Some cultures are perceived as being more supportive and understanding of issues
of disability and caring than others and their attitudes towards working women vary.

Mahmood, a British born Asian, has provided emotional support to his mother who has long
had mental health problems but since she has had a stroke he has to do absolutely
everything for her. Although originally living in a large extended family all siblings, nieces and
nephews have left and take no interest in him and his mother. Mahmood felt that there was
a cultural expectation by Social Services staff that Asian families stuck together and did not
understand that the rest of the family were not involved in caring decisions or support.

Pathway pointer
 Stereotyping might lead to people making assumptions about alternative or
additional care available to (in particular) Asian carers seeking work and should
be avoided by ascertaining each individual situation.

It seems that there is very limited information available to carers from the Chinese
community, due to limitations of the Chinese Carers‟ group support role and because
of the language barrier in accessing other sources of support and information.

Pathway pointer
 Because of the relatively self-contained sector, there might be potential to do an
innovative piece of work with the Chinese business community in conjunction with
the Chinese Community Centre and the Council funded Carers Support scheme
based there, to try to improve understanding and create some work placements or
opportunities for carers.

The potential support available through faith and cultural networks was explored in
the interviews; see faith and cultural groups.



BARRIERS TO AND / OR FACILITATORS OF POTENTIAL FOR PAID
WORK

Recognition and acceptance of the carer role

It may be some time before carers recognise or acknowledge that in taking on some
or all responsibility for looking after another person, that they have become a carer.

“It‟s only the last four years I‟ve classed myself as a carer, isn‟t that what a son or daughter
or friend does? So I didn‟t see myself as a carer. When my mum was ill, she‟d ring the GP
who would say, „Ask your carer to bring you up to the surgery‟, and mum would say, „I
haven‟t got a carer‟, and the GP would say, „Yes you have, Maxine‟, and she‟d say, „No,
she‟s my daughter‟. It was the social worker who told me that I was a carer, four years ago,
she was doing an assessment for my mum, and asked if I‟d ever had a Carer‟s Assessment.
My mum said „She‟s not the carer she‟s my daughter‟ and the social worker said, „No, you‟re
the carer‟. That was the first time I had anyone to talk to.” Maxine, carer for 40 years

“Only in the last 18 months did I recognise I‟d actually been caring a lot longer than I
thought. I met Simon 7 years ago, and I knew then he wasn‟t a well man. He hadn‟t been
diagnosed with epilepsy then and we didn‟t know what was wrong. So about 3 months into
the relationship I started attending health appointments with him. I had to buy another house
that was more accessible, and I realised that this has had a real impact on my life, I‟m a
carer.” Simon had a number of falls, resulting in several lots of surgery including emergency
brain surgery. Any opportunity for him to work again was dashed, putting Alastair in the role
of sole breadwinner. “That was when I became the full-time carer and the full-time worker. I
don‟t feel like a real carer because generally you can see the disability but with him it‟s
disguised, the pain, seizures, all that, it‟s only when he wears his [protective] hat and looks
like this [shows photo of bruises resulting from a fall during a fit] that I realise he‟s in such a
bad state and that I‟m dealing with this on my own, and I have dealt with that on my own all
this time.” Alastair

Pathway pointer
 People often don‟t recognise or label themselves as carers, so any initiatives
directed towards them may need to use a broader vocabulary or explanation to
register with some carers who would benefit from all sorts of targeted support.

This limited interpretation of „carer‟ may also apply to professionals, who may
interpret the caring role as physically based and underestimate or discount the
amount of emotional and organisational support many carers provide.

Anna, a doctor working in a hospital setting, now provides less personal care for her
husband than when he first had a stroke four years ago, when he needed almost everything
doing for him. “Usually „carer‟ as we understand it is those that help with physical needs and
that‟s obviously much less involvement now. In one way I‟m still a carer because there are
still things that he can‟t do.” Yet although he was formerly doing a PhD, he can now barely
read, has speech problems that mean he isn‟t confident on the phone, cannot drive, and has
mobility problems which mean he does not really do anything outside the house on his own,
Anna appears not to consider the fact that she still has to undertake most necessary tasks of
life on his behalf as part of her caring role (while also working full-time and bringing up two
small children.)


Carers and work report for Birmingham

Carers and work report for Birmingham

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Carers and work report for Birmingham