Whole UK

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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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Toolkit

Young Carers Pharmacy project

Pharmacies are visited by about 1.6 million people every day in England so they are ideally positioned to identify carers of all all ages including young carers. They can therefore play a key role in the early initiation of assessment and support which can be life changing.
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Health carePrimary carePharmacy ServicesCarers servicesSocial care
I work with: 
Adult carersYoung adult carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 15:30
Body: 

The Engaging with Pharmacies toolkit is aimed at young carer services to support them to work collaboratively with pharmacies. It draws on the Young Carers Pharmacy Project that took place between 2014 and 2016. This was delivered by Carers Trust Network Partner Salford Carers Centre as one of Carers Trust’s Innovation Generation projects.

Further information

Download the following resources:

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Guidance

Supporting Young Carers Aged Five to Eight

This resource aims to bring clarity for services working with young carers, as to whether or not it is necessary for them to register with Ofsted if they choose to work with children under eight years old..
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Carers services
I work with: 
Young carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 14:45
Body: 

Part two presents some local practice being undertaken by Carers Trust Network Partner, Carers Lewisham, with young carers aged 5–8. Although Part 1 of this resource is specific to England, many of the ideas and practice in Part 2 are applicable across the UK.

Further information

Download  the Carers Trust resource – PDF iconSupporting Young Carers Aged 5 to 8 a Resource for Professionals Working with Younger Carers

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Educational

Protecting Young Carers from Bullying

Protecting Young Carers from Bullying: A Guide for Schools, Community Groups and Policy Makers
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Education
I work with: 
Young adult carersYoung carersSibling carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 14:30
Body: 

This guide is aimed at all professionals who work with young people and are therefore likely to come across young carers. It aims to raise the awareness and understanding of the relationship between being a young carer and bullying, in order that proactive steps can be taken to help prevent young carers from being bullied.

Further information

Download the Carers Trust resource – PDF iconProtecting Young Carers from Bullying a Guide for Schools Community Groups and Policy Makers

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Research

A Road Less Rocky Supporting Carers of People with Dementia

A Road Less Rocky is a report from Carers Trust that found that carers of people with dementia are not getting the support and advice they often desperately need.
Area of Care: 
Mental HealthDay centreRehab CentreHospitalCare homesPrimary CareSecondary CareAcute CareDementia care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingPharmacy ServicesCarers servicesInformation and adviceCommissioning for carersSocial careCommissioning
I work with: 
Adult carersYoung adult carers
Caring for: 
AdultsOlder adults
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 14:00
Body: 

The report found that there were a number of critical points along a carer’s journey where they would most value information and support. These critical points include:

  1. When dementia is diagnosed.
  2. When the carer takes on an 'active' caring role.
  3. When the capacity of the person with dementia declines.
  4. When the carer needs emotional support and/or a break from caring.
  5. When the person with dementia loses their mobility.
  6. When the person with dementia has other health problems.
  7. When the carer has to cope with behavioural problems.
  8. When the carer's own circumstances change.
  9. When the person with dementia becomes incontinent.
  10. When decisions about residential care and end of life care have to be made

We have designed a toolkit around these ten points,the issues carers face at these points and what will make a positive difference. It has been produced to sit alongside A Road Less Rocky and gives guidance to professionals who come in contact with carers. The toolkit is useful for anyone who works with or treats patients with dementia and is therefore likely to come into contact with carers. 

A Road Less Rocky – Supporting Carers of People with Dementia complements the Triangle of Care Carers included: A Guide to best Practice for Dementia Care. This document describes how meaningful involvement and inclusion of carers can lead to better care for people with dementia, identifying six key standards required to achieve better collaboration and partnership with carers.

Although the terminology and legislation referred to in this toolkit applies to England the standards and rationale are applicable across the whole of the UK.

Further information

Find further information and download the full report A Road Less Rocky – Supporting Carers of People with Dementia (PDF, 962KB).

Download the toolkit PDF iconA Road Less Rocky: Making the Road Less Rocky for Carers, A Guide on how to Support Carers of People with dementia

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Research

Retirement on Hold

Our Retirement on Hold report highlights some of the challenges faced by older carers and makes recommendations to improve their experience now and in the future. Thank you to all the carers and Network Partners who contributed.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsSpecialist services
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health careCarers servicesSocial careCommissioning
I work with: 
Adult carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 13:45
Body: 

Key findings from our report

  • Care coordination – carers said they were spending too much time, and became stressed and anxious when trying to organise care and support for the person with care needs. 
  • Carers are caring for someone else when they have their own age-related health condition.
  • The pressures around carers feeling they had a 'duty to care' – the Care Act recognises that caring should be a choice.
  • Lack of appropriate replacement care to enable carers to take a break. 

Our key recommendations

  • Access to a 'care coordinator' – many older carers felt this would help them navigate the health and care system. It is recognised that with limited resources this may not be feasible, however, earlier referral to a carer organisation may help improve the situation for carers. 
  • Appropriate and timely access to information and advice about support available locally, nationally and UK wide. This information would need to recognise that not all older carers are able to access the internet.
  • Improved access to appropriate and good quality replacement care.

Further information

You will find our more information and our Retirement on Hold report on Carers.org.

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Good Practice

Identification of carers in GP practices

Not enough carers are likely to be receiving the support they need or are entitled to. One of the main obstacles to carers getting the right support is identification – both self-identification and identification by health professionals.
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health carePrimary care
I work with: 
Adult carersYoung adult carersYoung carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Friday, April 27, 2018 - 12:45
Body: 


There are an estimated seven million unpaid carers in the UK, however not enough carers are likely to be receiving the support they need or are entitled to. One of the main obstacles to carers getting the right support is identification – both self-identification and identification by health professionals.


Self-identification can be problematic as many carers, understandably, see their relationship with the person they care for as one of being a parent, child, neighbour, friend or partner and don’t recognise 'carer' as a term they would use.


This is why identification by health professionals becomes even more important.


Carers Trust’s Raising the voice of carers project works with local Network Partners and aims to give carers the tools and confidence to campaign on issues that matter to them.

Further information

Read our resource –  PDF iconIdentification of Carers in GP Practices (PDF 434 KB).

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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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Good Practice

Carers Trust ADVANCE mentoring scheme

ADVANCE was an innovative volunteer mentoring programme developed by Carers Trust for chief executives of Network Partners in The Carers Trust Network across the UK. It ran from 2015 to 2018 and is backed by materials for you to download (all available below).
I work in: 
Carers services
I work with: 
Adult carersYoung adult carersYoung carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Wednesday, March 21, 2018 - 09:00
Body: 

ADVANCE Mentoring Programme – introduction/overview

Is good leadership about:
  • Knowing all the answers, pretty much all of the time?
  • Coming up with clear-cut solutions to complex problems?
  • Keeping your thoughts to yourself and not being swayed by other people?
Not so, according to a three-year impact study of ADVANCE, an innovative volunteer mentoring programme developed by Carers Trust for chief executives of Network Partners in The Carers Trust Network across the UK – local charities delivering a range of services addressing the needs of unpaid carers and the people they care for. The traditional ‘heroic’ approach to leadership was considered by participants in the 12-month programme to be much less effective than the ability to:
  • Ask searching questions.
  • Listen carefully to different views.
  • Take time to reflect before acting.
Participating in ADVANCE enabled board members and chief executives to re-interpret their leadership role to fit a drastically changing world – a world where flexibility trumps rigidity every time. 
 
There is much to be learned from the experience of senior leaders who learned ‘on the run’ to enhance their confidence and skills in order to regain control of their lives and organisations. 
 
The independent impact study of the ADVANCE mentoring programme, commissioned by Carers Trust and carried out by Marsaili Cameron and Sheila Marsh from PublicServiceWorks, developed materials to support chief executives, board members and others to work separately and together in a focused way to ensure effective strategic leadership.
 
Findings from this study fed in regularly over three years to the ADVANCE mentors (senior volunteers from a wide range of backgrounds) and to the Carers Trust design team for the programme. This process enhanced the learning culture that characterised ADVANCE, supported by the work of Lead Mentor, Hilary Samson-Barry.
 

What materials are available, and how might you use them?

Want a summary of the impact of the ADVANCE mentoring programme?Deep Learning for Hard Times

  • PDF iconDeep Learning for Hard Times (PDF, 219KB) – a booklet summing up the impact of the ADVANCE mentoring programme.
  • Info cards – to support implementing the learning in similar local charities:
    • PDF iconADVANCE Cards A-C  (PDF, 190KB) – focusing on building sustainability, strengthening governance and developing partnership/collaboration – the three top issues tackled through the ADVANCE mentoring programme.
    • PDF iconADVANCE Cards 1-5  (PDF, 351KB) – focusing on transferable skills and practical insights gained by participants in the ADVANCE mentoring programme.

Want to make a presentation or work with a group?

Want to know more about the ADVANCE mentoring programme impact study and see the evidence behind the summary?

Want to discuss ADVANCE further?

If you would like to hear more about the context of  the ADVANCE mentoring programme and its introduction, email Carers Trust.
 
If you would like to know more about the methodology of the impact study, email Sheila Marsh or Marsaili Cameron of PublicServiceWorks.
Downloads: 
PDF icon Deep Learning for Hard Times (plus see more downloads below)
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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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