Whole UK

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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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Guidance

Young Carer Assessment Tools

Local authorities must offer an assessment where it appears that a child is involved in providing care. Here are some examples of assessment tools that could form part of an overall whole family approach to assessment.
Area of Care: 
Primary CareSecondary Care
Outcomes: 
PreventionWellbeingIdentifying carers
I work in: 
Information and adviceCommissioning for young carersEducation
I work with: 
Young adult carersYoung carersSibling carersFamilies
Location: 
Whole UK
Date Revised: 
Monday, September 28, 2015 - 09:00
Body: 
The Children and Families Act 2014 amended the Children Act to make it easier for young carers to get an assessment of their needs and to introduce ‘whole family’ approaches to assessment and support. Local authorities must offer an assessment where it appears that a child is involved in providing care. Here are some examples of assessment tools that could make up a part of an overall whole family approach to assessment. This guidance has been compiled by Carers Trust and The Children's Society as part of the Making a step change: Putting it into practice programme.

MACA YC-18: Multidimensional Assessment of Caring Activities

The MACA is a questionnaire to be completed by young carers that can be used as an indicator of the total amount of caring activity undertaken by a child or young person, as well as six subscale scores for: 
  1. Domestic tasks
  2. Household management
  3. Personal care
  4. Emotional care
  5. Sibling care
  6. Financial/practical care.

PANOC YC-20: Positive and Negative Outcomes of Caring 

The Positive and Negative Outcomes of Caring (PANOC-YC20) is a questionnaire to be completed by young carers that can be used to provide an index (or score) of the subjective cognitive and emotional impact of caring in young people.

Common Assessment Framework (CAF)

The CAF is a nationally standardised approach to conducting an assessment of the needs of a child or young person and deciding how those needs should be met. The CAF will promote more effective, earlier identification of children’s additional needs and improve multi-agency working. It is intended to provide a simple, non-bureaucratic process for a holistic assessment of a child’s needs, taking account of the individual, family and community.
More information on the CAF can be found in the PDF iconCAF Simplified Assessment Workstream

Outcomes Star 

Outcomes StarThe Outcomes Star™ both measures and supports progress towards self-reliance or other goals on multiple key areas such as health, caring role, relationships, feelings and behaviours, education and learning, etc. Different versions of the Star include the Carers Star, My Star and the Family Star. Each star is used to capture the voice of the young carer and their family, their needs, and their perspective on the changes they are experiencing.

My Life Now Wheel

My Life Now WheelMy Life Now is an individual Assessment and Planning Tool for Young Carers. The tools include both an in depth and quick assessment wheel and a framework for setting goals.

 

 

The YCRG screening tool (YC-QST-20)

The questions in the Screening Tool have been cognitively tested in the DfE national study of young carers (with young carers themselves) and in YCRG research over many years. The tool and explanatory model are also currently being used in other countries (Japan, US) to help both researchers and practitioners identify young carers and their needs.

Downloads: 
PDF icon Manual for Measures of Caring Activities and Outcomes For Children and Young People 2nd EditionPDF icon CAF - Simplified Assessment Workstream
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Good Practice

Improving Health Outcomes for Older and Young Adult Carers

In 2011 Carers Trust was selected by People’s Health Trust to coordinate the delivery of health related projects managed by carers centres, Crossroad Care schemes and young carers services across England, Scotland and Wales.
Area of Care: 
Mental HealthPhysical illness
Outcomes: 
Wellbeing
Location: 
Whole UK
Date Revised: 
Tuesday, February 24, 2015 - 14:00
Body: 

An Evaluation of the Improving Health Outcomes Programme 

As part of its Healthy Places, Healthy People funding programme, carers centres and schemes in locations pre-determined by People’s Health Trust were invited to submit project proposals detailing how they would spend funding to develop effective services to improve health outcomes for either older carers (those aged 60 plus) or young adult carers (aged 16–24) from socio-economically disadvantaged communities.

Graphic from report

Programme aim

The overarching aim of the programme was to improve the physical health and emotional wellbeing of carers across England, Scotland and Wales.

For older carer projects, Network Partners’ aims were divided into two categories, with Network Partners opting for either category:

  • Increase the opportunities for older carers to access activities aimed at improving health outcomes.
  • Increase the ability of older carers to access breaks from their caring role and improve the emotional, physical and/or financial health of older carers.

For all young adult carers projects, the specific aims were:

  • Improve the life chances of young adult carers.
  • Increase access to and/or develop support structures to enable young adult carers to move from appropriate children’s services to adult services.
  • Increase the support available for young adult carers to make informed choices about their own physical and mental health.

31 Network Partners were awarded funding in 30 geographical areas. 23 Network Partners planned to work on developing services for older carers, and eight Network Partners aimed to work with young adult carers. The grant available for each area was £40,000 for 12 months during 2012–13.

Evaluation

The evaluation of the programme concentrated on the project design and the impacts created for the beneficiaries supported by the projects. It also looked at the wider impact of the grant funding on the Network Partners, in particular exploring how grant funding can be used to address five wider issues that Network Partners are facing:

  • strategic
  • demand
  • asset
  • preventative and
  • carer-led challenges.

Download the PDF iconimproving health outcomes - impact report.

Improving the Health of Carers: A Casebook of Projects front coverImproving the Health of Carers:
A Casebook of Projects

This report takes an in-depth look at nine projects funded through the Improving Health Outcomes programme.

The report highlights the practical lessons from these projects about how to set up and deliver local support, and what to consider in the separate stages of work.

Download the PDF iconimproving health outcomes - casebook.

Older Carers Voices and Stories: The Personal Impact of Funding

This report aims to bring together older carers’ thoughts and feelings about dedicated services and activities delivered by Carers Trust Network Partners under the Improving Health Outcomes programme and the positive impact it has had on their lives.

Older Carers Voices and Stories: The Personal Impact of Funding front cover

Opinions have been gathered from 39 older carers who attended six focus groups held with Network Partners at Redbridge Carers Support Service, Derbyshire Carers Association, Helensburgh and Lomond Carers, Hillingdon Carers, North Argyll Carers Centre and Carer Support Wiltshire.

Older carer’s personal views about targeted services and activities, which would not have existed without the financial support of People’s Health Trust, are combined with five real life case studies. These provide a taste of the challenges older carers have to face on a daily basis and how just a little funding and support can have a significant and often life changing impact on carers’ health and wellbeing.

Download PDF iconimproving health outcomes - older carers voices and stories.

Downloads: 
PDF icon Improving Health Outcomes - Impact ReportPDF icon Improving Health Outcomes - Impact Report (Summary)
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Good Practice

Practice Examples: Tailoring support for young carers

Whilst young carers will have many shared experiences, each young person’s caring role and its impact on them will be unique. Some services respond to this by providing particular support focused on groups or individual young carers.
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health careCarers servicesSocial careEducationCommissioning
I work with: 
Young carersSibling carers
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 09:30
Body: 

Examples of tailoring support for young carers

Whilst young carers will have many shared experiences, each young person’s caring role and its impact on them will be unique. Caring for people with different conditions, at different points in their illness, in different environments and for different family members will bring its own challenges, opportunities and experiences. Some services respond to this by providing particular support focused on groups or individual young carers.

PDF iconSupport for young carers looking after someone with a palliative care diagnosis

FRESH (run by St Michael’s Hospice in Herefordshire) works to improve the life chances of young carers during the time of palliative care diagnosis and bereavement through a multi-disciplinary team based at the hospice.

PDF iconTargeted interventions for asylum seeking-and refugee young carers and their families

CareFree offers one-to-one support, respite groups, advocacy and other services to young carers and their parents from asylum seeking, refugee or newly arrived families living in Leicester.

PDF iconPartnership working for young carers in military families working for young carers

A partnership that works to improve the identification and understanding of the needs of young carers from military families and provides tailored support to their needs.

PDF iconWorkshop for young carers looking after their siblings

The workshops provide support and information to help young carers understand their brother's or sister's conditions.

PDF iconTiered support service for young carers 

Salford Young Carers Service operates on a three tier system. Young carers are assessed upon referral and then initially placed in band one with the intention of reducing their level of caring and their need for support. Intensive support is given to a young carer at the beginning, which then decreases as they move though the tiers.

Support and advocacy for young adult carers

The Suffolk Family Carers Transition Project provides support and advocacy services to young adult carers as they make decisions about their future and begin to access Adult Services.

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Guidance

Examples of Practice: Supporting young carers in families who may experience stigma

There are many hidden young carers in communities due to a lack of understanding and identification.
Area of Care: 
Alcohol MisuseSubstance Misuse
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health careCarers servicesSocial careCommissioning
I work with: 
Young carersFamilies
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 09:30
Body: 

Young carers often remain hidden in their communities, not getting the support they need. There are many reasons young carers go unidentified including a lack of public understanding about who young carers are and young carers themselves not realising that their lives are different from other children’s.

However, one of the main reasons young carers slip through the net is because their parents do not have an obvious condition - so people do not realise young people are caring or think they need any help. This situation can be made worse if the condition itself is stigmatised and a young carer or their family is reluctant or fearful of seeking help.

Support

Young carers and their families who may be more likely to experience stigma can benefit from different types of support.  

PDF iconOut of hours family support for young carers living with a substance misusing adult

The project aims to provide a range of emotional and practical support to families in order to improve outcomes for young carers, the substance misusing adults they care for and the wider family.

PDF iconSupporting families affected by drug and alcohol misuse

This initiative brings together knowledge, skills and experience from the adults and children’s sector to deliver a whole family approach that looks at how substance misuse effects the whole family.

PDF iconSupporting young carers from families affected by HIV

An initiative that works closely with families affected by HIV, faith and community leaders, schools, local social services and GPs to provide all round support for young carers.

Examples of practice

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