Carers in employment

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A Road Less Rocky - Supporting Carers of People with Dementia 

In May 2012, Carers Trust commissioned the Social Policy Research Unit at the University of York, and Firefly Research & Evaluation, to undertake research to ‘understand more about the caring journey undertaken by carers of people with dementia and the challenges they face, from initial concerns that there may be something wrong to experiences at the end of life and afterwards’.

England and Wales

The Mental Health Act 2007 amends the previous 1983 Act, which governs the compulsory treatment of certain people who have a mental disorder.

In 2015 the government published a new Code of Practice for the Mental Health Act (1983), Carers Trust published a briefing on the key points and what this means for carers.

Carers Trust Mental Health Act Code of Practice 2015 Briefing

Mental Capacity Act 2005

The Mental Capacity Act sets out how people who lack capacity now or may do in the future should be treated and their rights protected.

Scotland

Mental Health (Care and Treatment) Scotland Act 2003

This Act outlines how individuals with a mental disorder are to be treated in community and inpatient settings. 

Adults with Incapacity (Scotland) Act 2000

The Adults with Incapacity (Scotland) Act provides safeguards and standards for the rights of adults who are assessed to lack capacity to make decisions.

Northern Ireland

The Mental Health (Amendment) (Northern Ireland) Order 2004

This Order outlines how individuals with a mental disorder are to be treated in community and inpatient settings.

Current Mental Health Research

Research specifically on mental health caring is more sparse, but examples can be found on the sites below.

 

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Good Practice

The Carers Star

The Carers Star is a holistic and collaborative tool, designed for use in services that support carers one-to-one over a period of time.
Outcomes: 
PreventionWellbeingHealth inequalitiesCarers in employment
I work in: 
Carers services
Location: 
Whole UK
Date Revised: 
Tuesday, May 1, 2018 - 15:00
Body: 

The Carers Star helps services to assess carers’ quality of life and identify the support they need to continue caring. It also supports services to capture and evidence outcomes for carers and to engage carers in the process of change. Part of the family of Outcomes Star tools, it’s a tried and tested framework to assist services and commissioners in supporting carers more effectively.

How it works

The Carers Star is a holistic and collaborative tool, designed for use in services that support carers one-to-one over a period of time. It covers seven areas where carers often need support, including confidence in their caring role, balancing caring with work or time to relax, and finances.

Underpinning these scales is a ‘Journey of Change’ – five stages carers go through as they improve their lives, moving from ‘cause for concern’ up to ‘as good as it can be’. This gives a measure of progress, or distance travelled, and a set of manageable steps carers can take to become more independent.

Workers in services that support carers (both third sector and public sector) use the Carers Star at assessment and subsequent reviews to find out where a carer is on their journey and to plan appropriate actions to help them move up each scale.

All workers using the Carers Star need appropriate training and support to realise the benefits described below for commissioners, services and carers.

Supporting commissioners

The Carers Star helps local authority commissioners fulfil the requirements of the Care Act by providing a framework for effective assessment, action planning and review, combined with the ability to measure the impact of interventions in a way that is clear to everyone. It also supports services in undertaking preventative work with carers.

Carers Star data is easily collated using the Star Online web application or other IT systems, so services can report on outcomes for carers, examining both the big picture and the detail. Reports cover the key outcomes of interest to commissioners, using a consistent format and facilitating learning across different services.

Because the Carers Star is an integral part of assessment, support, planning and review, it doesn’t divert valuable resources from direct work with carers, making it popular with both workers and the people they support. It can also help improve the quality and consistency of support provided. 

“Not only is this a useful tool for assessment and identification of needs, its use over time can demonstrate to commissioners that they are getting the right outcomes from the services they fund.” 
Department of Health Green Paper, 2009

Supporting services

Workers and carers like the Star because it is simple to use, highly visual, holistic and focused on the reality of carers’ lives. Because it is collaborative, carers are engaged in their own process, rather than assessment being something ‘done to them’.

The completed Star gives a clear picture of carers’ needs and where they are on their journey, and helps to break change down into manageable steps so that support is more effective and better targeted.

For service managers, the collated Carers Star data provides information on carer outcomes to pinpoint good practice, gaps in provision or areas for improvement. Aggregated data can be used to compare services, and is also helpful in worker supervision.

Supporting carers

Carers complete the Carers Star in collaboration with a worker and plot their scores on a visual of the Carers Star, allowing them to see clearly where they are on their journey. The worker can then help the carer plan which areas to address and how.

At later meetings, worker and carer re-visit the Carers Star and get a clear picture of the progress that has been made and identify any further support needs.

Tried, tested and recommended

The Carers Star was developed by Triangle Consulting Social Enterprise in collaboration with Carers Trust and other carer organisations. Carers Trust secured funding from the Triangle Trust 1949 to develop a subsidised programme to roll out the adoption of the Carers Star across the The Carers Trust Network.

Outcomes Stars are widely used in the UK by voluntary organisations large and small, housing associations, NHS Foundation Trusts and local authorities, and have been backed by the Department of Health, the Big Lottery, NESTA, the National Social Inclusion Programme, the Chartered Institute of Housing, the London Housing Foundation, Homeless Link and the Mental Health Providers Forum, among others.

International interest in the Outcomes Star is also growing and it is used in several countries around the world. 

Further information

The Outcomes Star™ is a family of tools for supporting and measuring change when working with people. For more information, see www.outcomesstar.org.uk or email info@triangleconsulting.co.uk or call 020 7272 8765.

Carers Trust is a key collaborator on the Carers Star. For more information contact Carers Trust.

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Research

A survey of the experiences and needs of male carers

Husband, Partner, Dad, Son, Carer? is the report of a survey of the experiences and needs of male carers, carried out by Carers Trust and the Men’s Health Forum at the start of 2014.
Area of Care: 
Mental HealthPhysical illnessSecondary CareAcute Care
Outcomes: 
WellbeingCarer awarenessCarers in employment
I work in: 
Carers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning
I work with: 
Adult carersParent carersFamilies
Caring for: 
Young peopleChildren
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 10:15
Body: 

Caring is often seen as a ‘female’ issue but it is something that affects a large number of men too. The 2011 Census found that in England and Wales more than four in ten carers are male (42.3%) - amounting to 2.44 million men providing care, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction.

Despite their vast number, there has been little research to understand the experiences of these men or the vital role that they play in their families.

Carers Trust and the Men’s Health Forum sought to learn more about men’s experiences of caring, the impact it has on their lives and the support services they feel would be helpful to them. A total of 609 male carers from across the UK took part in a survey which included 119 fathers, all of whom were caring for a child or children with a disability, long term conditions or mental health or addiction issue. PDF iconDads care too: A survey of the experiences of fathers who are carers showcases the experiences of these dads.

Key findings

  • 119 dads responded, of all ages.
  • The highest proportion (72%) care for a son or daughter with a learning disability or autism.
  •  Nearly 20% had been caring for 21 years or more.
  • 35% cared alongside being in employment. 40% of those spent 60 or more hours caring per week.
  • A third of dads reported that they never get a break.
  • 46% said caring had a negative impact on their mental health, and 43% said it had a negative impact on their physical health.
  • Almost three quarters said they missed out on spending time with friends and family members as a result of being a carer.
  • The most common support wanted but not received was breaks from their caring role.
  • 55% said they felt the needs of male carers were different from female carers.
  • Many felt their role as a carer was not recognised, or that services were not designed in a way which met their needs.

Further information

Download Dads Care too.

Read the reportPDF iconHusband, Partner, Dad, Son, Carer: A Survey of the Experiences and Needs of Male Carers

Exexutive Summary (PDF iconEnglish language version(PDF, 1,728KB).

Executive Summary (PDF iconWelsh_language version(PDF, 728KB).

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Educational

About Time Grant Evaluations

Following the successful delivery of two About Time Grant programmes, Time for Change and Take Action and Support which addressed issues that can lead to young adult carers becoming disengaged from society, independent evaluations of the two programmes have been produced.
Area of Care: 
Mental HealthPhysical illness
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carersCarers in employment
I work in: 
Primary careMental health careHealth and wellbeingCarers involvementCarers breaksInformation and adviceCommissioning for carersEmploymentSocial careEducationCommissioning
I work with: 
Young adult carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Monday, February 12, 2018 - 10:00
Body: 

Key points: 

The objectives of the evaluations were to:
  • Provide an overall evaluation of all data to assess the progress of funded projects against the aims and objectives of the About Time grant programmes and of the wider About Time programme.
  • Conduct a qualitative study with funded projects to identify effective strategies and approaches for supporting and enabling young adult carers.
  • Provide a focused evaluation of data derived from outcomes measurement tools designed to measure the extent of care undertaken, the positive and negative impacts of caring for young adult carers and changes in their lives because of taking part in the funded intervention.
  • Evaluate the impacts of programme delivery and Carers Trust grant making processes on funded organisations.

About Time evaluations

The evaluations of the Time for Change and Take Action and Support grant programmes were structured in three phases and each had its own evaluation report with an overview of the whole programme also produced.

Phase one: February–October 2015

 

Phase two: November 2015–November 2016

PDF iconAbout Time Grant Programmes Evaluation Report Phase 2 November 2015 to November 2016 Executive Summary PDF (177 KB)

PDF iconAbout Time Grant Programmes Evaluation Report Phase 2 November 2015  to November 2016 PDF (323 KB)

Phase three: December 2016–October 2017

PDF icon About Time Grant Programme Evaluation Report Phase 3 December 2016 to October 2017 Executive Summary PDF (251 KB)

PDF icon About Time Grant Programme Evaluation Report Phase 3 December 2016 to October 2017 PDF (483 KB)

Overview Report

PDF icon About Time Grant Programme Evaluation Overview Report PDF (519 KB)

Key achievements and learning from the programmes include:

  • Around 7,200 young adult carers have benefited from 114 projects delivered by Carers Trust Network Partners, exceeding the original target of 6,200 young adult carers.
  • Programmes provided support to significant numbers of young adult carers for the first time, with over half of the young people participating being new to Carers Trust Network Partners.
  • Programmes developed a flexible response to the needs of young adult carers, including individual support, group activities and access to small grants for individuals, alongside the development of partnerships.
  • The programme design involved young adult carers and Network Partners, ensuring programmes reflected specific needs across UK.
  • Projects have been successful in reaching a representative group of young adult carers and there was a good geographic spread of projects across the UK.
  • Carers Trust has enabled Network Partners to deliver effective projects by being flexible about delivery approaches and providing good quality support, information and training.
  • The Carers Trust Network has a unique role in supporting the needs of young adult carers.
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Toolkit

Toolkit for Initial Teacher Education (ITE) Providers

This toolkit provides essential tools, templates and guidance for ITE providers who already include young carers as a key topic within their training programmes and ITE providers who are developing their training content regarding young carers.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needs
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health careMental health careHealth and wellbeingCarers servicesCarers involvementInformation and adviceCommissioning for young carersSocial careEducationCommissioning
I work with: 
Young adult carersYoung carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Wednesday, April 19, 2017 - 13:15
Downloads: 
PDF icon Supporting Young Carers in Schools: A Toolkit for Initial Teacher Education Providers
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Toolkit

Commissioning Services for Young Carers and their Families - examples of practice

Examples of practice - including the National Young Carers Coalition and links to further information.
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carersCarers in employment
I work in: 
Carers servicesCommissioning
I work with: 
Young carersSibling carersFamilies
Location: 
England
Date Revised: 
Tuesday, November 25, 2014 - 09:30
Body: 

Examples of Practice

PDF iconYoung carers talking: Your carers' views on what helps them

This report presents the voice of young carers on the issues that matter to them and their views on current interventions.

PDF iconYoung carers' involvement in a local authority commissioning process

The commissioning exercise enables members of the Norfolk Young Carers Forum to have their say on the design of local services, scrutinize bids and influence the awarding of contracts for young carers services made by Norfolk County Council.

Young carers forum to influence activities and services

VOICE YC – which stands for Views, Opinions, Ideas and Choice for Every Young Carer – is the young carers’ forum for Bromley. It provides a place for young carers to discuss issues that are important to them and to influence policy and decisions that affect young people in Bromley.

National Young Carers Forum

Supported by Carers Trust and The Children’s Society, the National Young Carers Coalition developed two resources to support services set up and run their own local young carers forum to influence local policy and practice:

Links to further information

Working together to support young carers and their families - A template for a local memorandum of understanding between statutory directors for Children’s Services and Adult Social Services.

Recognised, Valued and Supported: Next Steps for the Carers Strategy - published by the Department of Health in 2010.

The Whole Family Pathway - listening to children within a 'whole family' context.

Young Carers Personalisation and Whole Family Approaches 2011 - Young carers: personalisation and whole family approaches (Association of Directors of Adult Social Services / Association of Directors of Children’s Services).

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Toolkit

Commissioning Services for Young Carers and their Families

Awareness and support for young adult carers has vastly increased along with recognising the importance of dedicated support and services as they grow into adulthood.
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carersCarers in employment
I work in: 
Carers servicesCommissioning
I work with: 
Young carersSibling carersFamilies
Location: 
England
Date Revised: 
Tuesday, November 25, 2014 - 09:30
Body: 

Over the last decade services supporting young carers have evolved significantly. Many have expanded the services they offer from providing respite activities, to delivering more targeted support (such as one to one sessions and advocacy) and more recently to supporting the whole family in order to reduce the caring role of any children in the household.

Support for young adult carers

Awareness and support for young adult carers has vastly increased along with recognising the importance of dedicated support and services as they grow into adulthood. This includes key transitions between children’s and adults’ services and access to further education and employment.

There is now general recognition that the best way to support young carers is to take a ‘whole family approach’. Whole family working involves understanding and addressing the needs of the family as a whole.

This means considering the impact of an individual’s additional needs on the rest of their family and addressing a child’s needs within the context of their family, instead of in isolation.

The need for this holistic approach has been recognised in the new changes to legislation in both the Children’s and Families Act and the Care Act.

Young carers are experts

It is crucial that young carers and their families are involved in the development of services that affect them. Young carers know what would make their lives better and are the experts when it comes to their needs and their caring roles. Young carers’ voices need to be heard. Think Local Act Personal have developed Making it Real for Young Carers to support commissioners with this.

Carers Trust Toolkit: Commissioning Services for Young Carers and their Families

Carers Trust has written Commissioning Services for Young Carers and their Families which aims to support the commissioning of services for this vulnerable group in line with the principles of the new legislation coming into effect in 2015 and the Government’s National Strategy for Carers.

The toolkit:

  • brings together into one place key facts about young carers
  • informs commissioners of the needs of young carers and their families and the importance of listening to the voices of young carers when developing services
  • draws together many practical examples of how services are currently supporting young carers and what has been found to be effective in supporting this vulnerable group
  • emphasises the importance of both a ‘whole family’ and ‘preventative’ approach
  • suggests outcomes to aim for and tools for measuring the effectiveness of interventions.

Further information

Commissioning Services for Young Carers and their Families - examples of practice

Downloads: 
PDF icon Toolkit: Commissioning Services for Young Carers and their Families
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Key Info

Young carers and their education

Young carers are a particularly vulnerable group of pupils, specifically mentioned in Ofsted’s evaluation inspection schedule.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health careCarers servicesSocial careEducation
I work with: 
Young adult carersYoung carers
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 16:30
Body: 

Young carers’ experiences in education

Young carers are a particularly vulnerable group of pupils, specifically mentioned in Ofsted’s evaluation inspection schedule.  Often, these children are caring for relatives without their teachers’ knowledge, yet if unidentified and unsupported, their caring roles can seriously affect their future wellbeing, life chances and levels of aspiration. 

Research shows that:

  • Around one in 20 young carers miss school because of their caring responsibilities, affecting not just their education but their chances of longer term employment.
  • They have significantly lower educational attainment at GCSE level, the equivalent to nine grades lower overall than their peers (i.e. the difference between nine B’s and nine C’s).
  • They are more likely than the national average not to be in education, employment or training (NEET) between the ages of 16 and 19, which reduces their future life chances.
  • Although young carers need extra support, they are no more likely find it from statutory agencies than other children.
  • A quarter of young carers said they were bullied at school because of their caring role. Only half had received additional support from a member of school staff.

Source: 1-4 Hidden from View: the experiences of young carers in England (The Children’s Society 2013) / 5 Young Adult Carers at School: Experiences and Perceptions of Caring and Education (Carers Trust 2013).

Young adult carers at transition

Transitions from school are particularly complex and challenging for young adult carers.  Research shows that:

  • Around 1 in 5 young adult carers become NEET when they leave school.
  • Over half of young adult carers at college or university said they experienced difficulties because of their caring role and 16% were concerned they might have to drop out.
  • Less than half of young adult carers thought they had received good careers advice and only 19% though that it took their caring role into account.
  • Over three quarters of young adult carers at college or university had communicated their caring role to their college or university but nearly half still felt there was no one there who recognised them as a carer and helped them.

Source: 1 Young Adult Carers and Employment (Carers Trust 2014) / 2 & 4 Young Adult Carers at College and University (Carers Trust 2014) / 3 Young Adult Carers at School: Experiences and Perceptions of Caring and Education (Carers Trust 2013). 

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Guidance

How you can support young adult carers in employment

Your workplace could have policy in place that specifically deals with issues that carers could face for example periods of absence or requesting flexible working.
Outcomes: 
PreventionWellbeingHealth inequalitiesCarer awarenessCarers in employment
I work in: 
Employment
I work with: 
Young adult carers
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 16:30
Body: 

Create a carers policy for your workplace

Your workplace could have policy in place that specifically deals with issues that carers could face for example periods of absence or requesting flexible working.

By creating a policy specifically for carers, you are showing that you support, value and understand the needs of your employees. Macmillan have developed a template Carers Policy that you may find helpful.

Be aware of your duties as an employer under the Equality Act 2010

Under the Equality Act 2010, you must prevent your employees being discriminated against by association with a protected characteristic. Carers are included in this group.

Raise awareness of young adult carers in your workplace

By creating a working environment where young adult carers feel accepted and supported by all members of staff you will be giving them better support and, as a result, they should feel more valued as a member of the team.

Engage with local carers services

Most areas will have a local carers service nearby where young adult carers can access support. You can find them by looking at the carers services map or via your local authorities’ web page or advice line.

Carers services will be able to advise you on the appropriate steps to take to support young adult carers in the workplace.

Carers Services may be interested in working with employers and businesses to raise awareness so see if anyone would be available at your local service. Give them a call to see what they can offer you.

What is being done to support young adult carers in the workplace?

Carers Trust is holding a series of very successful events in partnership with several global companies for young adult carers. The events show young adult carers that they will be accepted in large workplaces whilst showcasing the skills that young adult carers have.

(The event) opened my eyes about the support companies offer carers and jobs available within these companies. I realised my caring role has taught me transferable skills.

(I enjoyed) the tour workshops, feeling of acceptance and understanding respect.  Increasing aspirations and hearing real life stories. Talking to recruitment agency workers about CV’s, It meant a lot to see how being a carer doesn’t have to stop your aspirations or hold you back.  You can be successful.

Carers Trust is managing the Take Action & Support and Time for Change programmes that aim to help young adult carers in taking action to address barriers to their engaging with educational, employment or training aspects of society and support them in doing so.

The programmes will run from June 2014 – December 2016 and will provide young adult carers with a series of activities promoting personal development, wellbeing and new skills to help support their transition to adulthood whilst recognising that they may have additional barriers relating to their caring role.

Employers for carers

This resource is geared towards employers of all adult carers however the information provided is still relevant to supporting young adult carers in your workplace.

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Guidance

Young adult carers - employment and training

Guidance on some of the challenges young adult carers face in employment, including a young adult carers experiences of employment.
Outcomes: 
PreventionWellbeingHealth inequalitiesCarer awarenessCarers in employment
I work in: 
Employment
I work with: 
Young adult carers
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 16:30
Body: 

What challenges do young adult carers face in employment?

Young adult carers aged 16-18 are twice as likely to be not in education, employment, or training (NEET) as their peers without caring responsibilities due to the additional challenges they face in the workplace and their caring role.

It is likely that you have carers working alongside you in your job although you might not know it. Some signs that your college may be a carer are:

  • being late
  • high levels of absence
  • Fatigue.

Vulnerable to unemployment

Young adult carers are particularly vulnerable to periods of unemployment because of their caring responsibilities which can be misunderstood by employers. This is particularly difficult when a young adult carer is at the outset of their career and has not yet had the opportunity to establish themselves or their capabilities professionally.  

In 2014 Carers Trust published research into the experiences of PDF iconyoung adult carers in employment or training. Young adult carers gain many skills through their caring role for example budgeting, prioritising, increased empathy and deeper understanding of others.

However, young adult cares are struggling to put these skills into practice because of the demands placed on them due to their caring role. On average, the young adult carers that Carers Trust surveyed were absent from work for the equivalent of 17 days per year, and were late or had to leave early on approximately 79 days per year because of their caring responsibilities.

Young adult carers are communicating their situation to their managers but few offer support. 67% of the young adult carers surveyed informed their manager of their caring role but 41% reported that their managers have not been supportive.

Flexible work

Based on these statistics, it is not surprising that young adult carers often choose flexible work that is based close to the person they care for to minimise the potential for disruption to their working lives. Although understandable, the tight criteria on potential jobs leaves them vulnerable to periods of unemployment.

Young adult carers have reported that they do not get clear careers advice that takes the skills gained from their caring role into account. Again, this means that their employment choices are restricted.

Young adult carers experiences of employment

Terry is 20 years old and dreams of opening his own restaurant and becoming a chef. Terry cares for his father and he is determined to make his Dad proud and achieve his goals, even if they do get side-lined at times. He has been caring for his father since he was a small child and was supported by a young carer’s project until he was 18 when he moved to a young adult carer’s project.

Terry has worked a few jobs off and on but has had great difficulty in maintaining stable employment because of his caring role.

He has made his employers aware of his caring role, even going so far as to introduce his managers to his father. His manager said that Terry could take time off if he needed to care for his father.

Terry’s father was suddenly taken to hospital with a life threatening condition so Terry called his employer to tell them that he was unable to come into work. His employer was understanding on the telephone but when he returned to work the next week, Terry found he had half the number of shifts he would normally expect. Eventually Terry had to leave because he could not support himself on the low number of shifts he was offered.

Terry believes that this was because he had to put his caring role first.

Further information

How you can support young adult carers in employment

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