Carers involvement

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Guidance

Partners in Care

The Royal College of Psychiatrists and The Princess Royal Trust for Carers (now Carers Trust) joined forces and launched the Partners in Care campaign. The partnership produced a range of leaflets on specific conditions and a comprehensive toolkit.
Area of Care: 
Mental Health
Outcomes: 
IntegrationCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers involvementCommissioning
Location: 
Whole UK
Date Revised: 
Thursday, May 10, 2018 - 14:30
Body: 

The Royal College of Psychiatrists and The Princess Royal Trust for Carers (now Carers Trust)  joined forces and launched the Partners in Care campaign in January 2004.

The objectives of the campaign were to highlight the problems faced by carers of all ages of people with different mental health problems and learning disabilities, and encourage true partnerships between carers, patients and professionals.

The partnership produced the following leaflets:

  • checklist for professionals working with mental health carers
  • checklist for professionals working with children of parents with mental health problems
  • checklist for carers meeting with psychiatrists
  • confidentiality leaflet.

The partnership also produced a range of leaflets on specific conditions and a comprehensive toolkit.

To find out more and access the leaflets, visit the Partners in Care website.

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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

Supporting Students with Caring Responsibilities: A Resource for Further Education Providers to Help Young Adult Carers Succeed In Further Education in Wales

A Wales-specific, user-friendly resource, this toolkit was developed in partnership with Learning and Work Institute to increase awareness of student carers and their specific needs, promote existing good practice from colleges and carers services and offering expert recommendations.
Area of Care: 
Mental HealthSpecial education needs
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers servicesCarers involvementInformation and adviceCommissioning for young carersEducation
I work with: 
Young adult carersYoung carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Wales
Date Revised: 
Tuesday, October 9, 2018 - 10:45
Body: 

Student Carers in Further Education

In 2015 Carers Trust worked with the National Institute for Adults Continuing Education (NIACE) to develop a practical resource for colleges. In 2017 Carers Trust Wales and Learning and Work Institute worked together to develop Supporting Students with Caring Responsibilities: A Resource for Further Education Providers to Help Young Adult Carers Succeed in Further Education in Wales, drawing on good practice from colleges and carers centres across Wales. 

This interactive resource has been designed to generate momentum for identifying and supporting student carers within colleges. We hope that it will inspire and assist all colleges to build on good practice to develop their own approaches to identifying and supporting this student group. In doing so, this will ensure that students who are caring for others - students whom, in many instances, will have overcome very difficult circumstances and have aquired valuable transferable skills along the way - are able to reach their potential and successfully achieve their educational aims. 

Feedback

Carers Trust Wales will be contacting colleges across Wales in September 2018 for feedback on the implementation on the toolkit.

Downloads: 
PDF icon Supporting Students with Caring Responsibilities: A Good Practice GuidePDF icon Cefnogi Myfyrwyr a chanddynt Gyfrifoldebau Gofal: Canllaw Arfer Da
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Good Practice

Supporting carers of people with dementia in black, Asian and minority ethnic communities

A good practice example of working with carers of people with dementia from diverse communities by the Dementia Information and Support for Carers (DISC) service hosted by Sandwell Crossroads Birmingham
Area of Care: 
Mental HealthPhysical illnessSpecial education needsSpecialist servicesDay centreRehab CentreHospitalCare homesDementia care
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingPharmacy ServicesCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning
I work with: 
Adult carersFamilies
Caring for: 
AdultsOlder adults
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 13:45
Body: 

DISC Dementia information and support for carers

The Disc Service was launched 11 years ago, it is hosted by Sandwell Crossroads and funded by Sandwell and West Birmingham, Cross City, South Central CCG’s, and Birmingham City Council through the Birmingham Bettercare Fund

The service originally operated in West Birmingham, but had funding extended to cover the entire Birmingham City Council area.

The service is focused on supporting carers from the diverse communities in the Birmingham area. The DISC service prides itself on being proactive in recruiting staff from local black, Asian and minority ethnic (BAME) communities who have both the language skills and understand the cultural sensitivities.

The service supports over 400 carers and offers Iiformation, advocacy and support for carers, though one-to-one contact and successful weekly information and support groups.

It also offers a signposting and referral service into other local statutory and voluntary sector services.

Examples of the type of help and support carers have receive:

  • Accessing respite
  • Liaising with district nurses, occupational therapists and social workers.
  • Continence advice and support.
  • Advice in managing changing and unusual behaviours.
  • Finding the right care such as day centres, care homes and care agencies.
  • Talking to the wider family.
  • Advice on benefits and carers' rights.
  • Information on the Mental Capacity Act.
  • Information on lasting power of attorney

DISC's strengths

  • Building relationships with carers over a long period of time.
  • Stepping in to offer support before a crisis develops.
  • Bridging the gap between clinical diagnosis and families coping alone.
  • Making carers feel welcome – 14 of them formally volunteer in supporting other carers.
  • Being led by carers, listening to carers and developing services to meet need.
  • Feeling passionate about the service.

Further information

For more information on the service contact Jo.Moon@sandwellcrossroads.org or visit the Sandwell Crossroads website.

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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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Children and young people’s mental health can be affected by their caring role, whether the condition of the person they care is related to physical health, mental health, an addiction or frailty in old age. 

The mental health of young carers, aged 17 or under

The evidence shows that young carers have worse mental health than their peers:

  • A survey of 348 young carers found 48% said being a young carer made them feel stressed and 44% said it made them feel tired. 
  • A survey of 61 young carers in school found that 38% had mental health problems. 
  • The 2011 Census showed that young carers providing 50+ hours of care a week were up to five times more likely to report their general health as ‘Not good’. 

The mental health of young adult carers, aged 16-25 

Young adults with caring roles report higher rates of anxiety and depression. The GP Patient Survey finds that a third more young adult carers report anxiety or depression than other young people- 39% for young adult carers, in contrast with 28% of young people without caring responsibilities.  

A Carers Trust survey of young adult carers found that 45% reported mental health problems. 

Improving the mental health of young carers and young adult carers

The Time to be Heard campaign calls for better support for young adult carers and their families to address caring roles that have a negative impact on their health, including mental health. We are also calling for local plans to improve children’s mental health services, sometimes called Local Transformation Plans, to include measures that improve the mental health of young carers and young adult carers.

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Guidance

Policy and legislation in Scotland

The law relating to carers differs across the UK. The Scottish Parliament has responsibility for health, the NHS and social care, so most of the legislation which affects carers in Scotland is discussed in the Scottish Parliament.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Carers servicesCarers involvementInformation and adviceCommissioning for carersCommissioning for young carersSocial careCommissioning
Caring for: 
Adults
Location: 
Scotland
Date Revised: 
Wednesday, April 1, 2015 - 11:15
Body: 

The law for carers in Scotland

The law relating to carers differs across the UK. The Scottish Parliament has responsibility for health, the NHS and social care, so most of the legislation which affects carers in Scotland is discussed in the Scottish Parliament. The Equality Act 2010, laws around flexible working for carers, and legislation relating to benefits for carers is UK-wide and so is also applicable to carers in Scotland.

There is also a specific piece of legislation for carers introduced in early 2015. The Carers (Scotland) Bill will consolidate existing rights from other pieces of legislation as well as enshrining new rights for carers in law. Like all Scottish legislation it will go through a three-stage process, allowing for debate and discussion in committees, evidence to be gathered and amendments to be made. This allows opportunities for the Bill to be further strengthened and we will be working closely with the Scottish Government, MSPs and other decision-makers, carers and Network Partners to make sure the Bill can make a real difference for carers and carers’ services.

Key legislation

A strategy for carers

Scotland has a Carers’ Strategy. Caring Together: The Carers Strategy for Scotland 2010-2015 is a framework for policy and legislation development in Scotland and has driven the development of a range of projects and initiatives that aim to improve the lives of Scotland’s carers, ensure that organisations and services are able to support carers and recognise them as equal partners in care, and support carers to have a life outside of caring and to care with confidence. 

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Carers Rights Charter

As set out in the Carers’ Strategy, Carers Scotland and the Minority Ethnic Carers Project (MECOPP) have been commissioned by the Scottish Government to develop a Carers Rights Charter. Consultation on the Charter took place in 2013 with carers and carers’ organisations, and the final Charter of Rights will be launched in conjunction with the Convention of Scottish Local Authorities in 2014.

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Self-directed support

Legislation on Self-directed support (SDS) was passed in 2012. The Social Care (Self-directed support) (Scotland) Act 2013 ensures that all individuals and families who receive social care support (including carers) have choice and control over how this support is delivered, by being offered different options on how they take the support.

Carers can help the person they look after to manage these support options, or if carers are receiving a support service in their own right, they are also entitled to options when getting support.

Carers Trust Scotland has produced a guide for carers on SDS. The Scottish Government’s SDS website also gives more detailed information on SDS options, how SDS works in practice, and examples and case studies of SDS users. 

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Integration of health and social care

The Public Bodies (Joint Working) (Scotland) Act came into force in 2014 and legislates for health boards and local authorities to integrate budgets and services and to ensure that health and social care provision across Scotland is joined-up and seamless, especially for people with long term conditions and disabilities and their carers.

The legislation and the regulations and guidance that accompany it support the arrangements for integrating health and social care, in order to improve outcomes for patients, service users, carers and their families. This will enable health boards and local authorities to work together effectively to deliver quality, sustainable care services.

Carers and service users are supported to be involved and make decisions about services in their areas, with consultation required when integration schemes are being developed, when strategic plans are being developed and reviewed, and at any other time when a decision might significantly affect the provision of services in an area. 

Since the consultation stage of the Act, we have been calling for carers and service users to be involved in a supported and meaningful way so that their participation is as valuable as possible.

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A Carers’ Bill for Scotland

In October 2013, at the second Carers’ Parliament, Alex Salmond announced the Scottish Government’s intention to legislate for carers before the Scottish General Election in 2016.

A consultation on the proposals for a Carers’ Bill ran from January 2014 to April 2014 and examined the possibilities to introduce further duties for statutory bodies, and new rights and entitlements for unpaid carers.

All aspects of the carer journey were consulted on, from identification and assessment through to service provision, carer involvement and service review. Young carers were also explicitly included in these legislative proposals.

The Carers (Scotland) Bill was launched on 9 March 2015 and will consolidate existing rights from other pieces of legislation as well as enshrining new rights for carers in law. Like all Scottish legislation it will go through a three-stage process, allowing for debate and discussion in committees, evidence to be gathered and amendments to be made. This allows opportunities for the Bill to be further strengthened and we will be working closely with the Scottish Government, MSPs and other decision-makers, carers and Network Partners to make sure the Bill can make a real difference for carers and carers’ services.

The Bill sets out a range of measures to improve identification and support to carers, including the introduction of a new duty on local authorities to support carers who meet certain eligibility criteria.. This is a big change from the current system where local authorities have a power to support carers if they choose to.

Carers Trust Scotland has produced a PDF iconbriefing on the Carers (Scotland) Bill, and a summary specifically looking at its PDF iconprovisions for young carers.

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Charging

Regulations that are part of the Social Care (Self-directed support) (Scotland) Act 2013 prevent carers from being charged for social care services that they have been assessed as needing to be provided to them in order to support them to provide care. This includes (but is not limited to)

  • the provision of information and advice
  • advocacy for carers and young carers
  • emotional support and counselling
  • training for carers and young carers
  • support with housework or gardening or other similar activity
  • cost of taxi fares and driving lessons in special circumstances
  • short breaks
  • translation and interpretation services.

Carers assessment

Most services are provided following the identification of need through a Carer’s Assessment. If the carer is not eligible for a Carer’s Assessment, because he or she does not carry out a substantial amount of care on a regular basis, then local authorities have the discretion to provide support to the carer without an assessment having been carried out. Charges should also be waived in this situation. 

There are some limitations to waiving of charges around short breaks, driving lessons and taxi fares, and household tasks. The briefing below goes into greater detail about these limitations and the impact on carers who are receiving these kinds of services and support.

This right of carers not to be charged for support applies to services provided to both adult carers and to young carers for services provided under the Social Care (Self-directed support) (Scotland) Act 2013 and under S22 of the Children (Scotland) Act 1995.

Carers Trust Scotland, along with the other national carer organisations, has produced an easy-read briefing about PDF iconwaiving of charges for carers who are receiving self-directed support.

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PDF icon Waiving of charges for carers - summaryPDF icon Carers (Scotland) Bill - briefing
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Key Info

Young Carer Services

Young carers’ services provide a level of expertise in supporting young carers that universal services, by virtue of being universal, cannot provide.
Area of Care: 
Mental HealthPhysical illness
Outcomes: 
PreventionCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersSocial careEducationCommissioning
I work with: 
Young carers
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 11:45
Body: 

Young carers’ services provide a level of expertise in supporting young carers that universal services, by virtue of being universal, cannot provide.

Many are able to be flexible and creative in how they deliver services. By championing the needs of young carers and families, many local services have also driven forward strategic change and workforce development in local areas.

Early intervention

Young carer services offer a range of early intervention and prevention support to young people with caring responsibilities aimed at:  

  • identifying and supporting young carers early
  • reducing inappropriate or excessive caring roles
  • improving young carers physical, mental and emotional health
  • reducing barriers to accessing and sustaining education, training and employment
  • Improving young carers’ life chances and helping them reach their potential.

Young carer services range in size and services offered, with funding coming from a range of sources including local authorities and voluntary sector grants.

Many young carer’s services have now also adopted a whole family approach. Many are now assessing and responding to the needs of the whole family by directly supporting families or by actively coordinating the support of other services.

Different types of activities offered include

  • activities and breaks
  • peer and community support, including young carers groups and peer mentoring schemes
  • information, advice and guidance, including 1:1 support and age appropriate information
  • emotional support
  • advocacy
  • brokerage and support planning
  • training in subjects such as health and safety, wellbeing and life skills
  • supporting families and young carers to apply for appropriate benefits
  • emergency planning support
  • whole family support
  • raising awareness and upskilling the workforce, including engagement with education, health and social care professionals
  • Young carers informing service development.

Where are young carer services located?

The Children's Society website has a map of young carers projects around the UK. Use the postcode, address or county search to zoom in to find local projects.

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