Whole UK

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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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Research

Time to be Heard Event: Nottingham University 2014 Evaluation Report

An evaluation of the Carers Trust Time to be Heard campaign event that took place in Nottingham in 2014 for young adult carers.
I work in: 
Education
I work with: 
Young adult carersYoung carers
Location: 
Whole UK
Date Revised: 
Tuesday, May 1, 2018 - 15:30
Body: 

As part of the Time to be Heard campaign, Carers Trust organised an event for 200 young adult carers (aged 16-25) and their support workers to get their voices heard by the decision makers who could reduce barriers to further and higher education.

Some key themes emerged:

  • Young adult carers need tailored information.
  • Young adult carers are concerned about disclosing their caring status.
  • Young adult carers are worried about going to university.
  • Young adult carers face distinct barriers to accessing further education.

The event also provided information and dispelled myths about access to college and university.

Read the evaluation of the event

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Educational

Universities supporting students with caring responsibilities

View details of Universities in the UK who have implemented dedicated support for students with caring responsibilities.
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Education
I work with: 
Adult carersYoung adult carers
Location: 
Whole UK
Date Revised: 
Tuesday, May 1, 2018 - 15:30
Body: 

This is a list of Universities in the UK that have implemented dedicated support for students with caring responsibilities. If you would like to contribute what your university does for students with caring responsibilities to this list, contact Carers Trust

Please note, this does not claim to be a comprehensive list of universities who have implemented specific support for carers. Furthermore, Carers Trust has not checked or vetted the support promoted here by universities.

Initiatives supporting young adult carers at universities

The University of Birmingham 

Young Adult Carers Event:  2 April 2015 

This event, hosted by the University of Birmingham, was designed for young adult carers to discover and learn about university and student life. 

University lead contact for student carers: Jane Patel - call 0121 414 8489. 

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The University of Nottingham

Outreach and taster days for young adult carers

The University of Nottingham hosts outreach and taster day activities for young adult carer groups from around the Midlands. 

Student Support for those with caring responsibilities 

The Student Support Team at the University of Nottingham has a dedicated contact for students with caring responsibilities, Carole East. Students are welcome to contact Carole directly, her contact details are: carole.east@nottingham.ac.uk or 0115 9514471.

University lead contact for student carers: Emma Szembek - call 0115 8466468 or Daisy Throup - call 0115 8467336.  

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The University of Winchester

Specific outreach to young carers and young adult carers

  • The University of Winchester runs an annual residential for young adult carers aged 14+ living in the county of Hampshire.
  • The University hosts taster days for young adult carers aged 14+.
  • The University engages in partnership work with young carers projects around Hampshire as part of its widening participation work and to support young carers with life skills and career choices.
  • The University recruits young adult carer students as Higher Education Ambassadors for the University. 
  • Visit the University young carers page.

Multi-agency partnership working for young carers and young adult carers

The University of Winchester contributes annually to the Young Carers Festival organised by The Children’s Society. 

Visit the University young adults carers page.  

Compact Scheme

The University of Winchester specifically includes in its Compact Scheme, with local colleges and sixth forms, students ‘who have caring responsibilities’ or who have ‘a disrupted pattern of education’ or who have ‘problems relating to health, disability or bereavement’, among other criteria.

Postgraduate financial support for young adult carers

The University of Winchester of Winchester has a Postgraduate Access Scholarship Scheme (PASS). The scholarship provides a 20% discount on tuition fees for a number of groups including a “carer for a family member with long-term ill-health or disability”.

University lead contact for student carers: Dr Terri Sandison - call 01962 827225 or Joanne Gale-Chambers - call 01962 624890.

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York St John University

Partnership work with York Carers Centre

York St John University works closely with York Carers Centre to support young adult carers. This includes a York Carers Centre stall at Fresher’s Fair and information stalls throughout the year.

University lead contact for student carers: Anna Herbert - call 01904 876408 or Vanesa Emslie - call 01904 876970.#

De Montford University (DMU)

DMU recognises that students with caring responsibilities may have additional support needs. It has set up a webpage of useful information and contacts for student carers and encourage any student with a caring role to contact one of the designated staff for student carers.   

University lead contacts for student carers:

  • Melissa Page, HE Guidance Officer call 0116 257 7872
  • Ryan Ward, HE Guidance Officer call 0116 257 7605
  • Email: transitions@dmu.ac.uk

 
DMU organises university experience days for student carers which involves taster sessions, campus and accommodation tours and meeting current students.
 
The university is part of local networks including those run by Leicester City Council and Barnardos. It also has five UNITE Foundation Scholarships which offer free accommodation in a Unite hall of residence for three years. Student carers are a priority group for this award.  
 
For further information please contact Melissa Page.

Sheffield Hallam University

Information about support for student carers at the university is available on its website.

Pre-entry support

The Compact scheme provides extra support to students who face barriers to progressing to university due to having caring responsibilities (amongst other circumstances). Contact the Compact team on 0114 225 4231 or email.

On course support for student carers

University lead contacts for student carers – Robin Kerr and Lynette Granger, call 0114 225 3813 or email.

  • Ring round of new student carers to check how students are settling in, resolve any issues and refer to appropriate support services. Targeted emails are also sent to raise awareness of relevant opportunities and support services.
  • Information and advice pages for student carers – dedicated pages for student carers are included on the Student Advice and Information blog. Robin and Lynette also post articles on the blog about their work with student carers.
  • One-to-one advice for student carers – Robin and Lynette are happy to see any student on a one-to-one basis to discuss their caring role, give information and advice about university life and provide supported referrals to local carer organisations
  • Partnership work with local carers’ organisations – Robin and Lynette have made close links with local carer organisations to help support student carers.
  • Staff from Sheffield Carers Centre and Sheffield Young Carers’Project have also delivered training to staff in student facing roles across the university.

Financial support for students with caring responsibilities

Students with caring responsibilities who may need extra financial support because they have higher than expected costs or they have a sudden financial emergency are eligible to make an application to the Sheffield Hallam Student Support Fund. Further information is available from Student Funding and Access Support on 0114 225 3813 or via email

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University of Manchester

For more information visit the University of Manchester student carers webpage or contact Jessica Nightingale on 0161 275 2987.

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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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Educational

Student Carers in Higher Education

This resource will enable universities and services supporting young adult carers to gain a greater understanding of the challenges that this group of students face and how they can be better supported to access and succeed in higher education.
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Education
I work with: 
Adult carersYoung adult carers
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 16:15
Body: 

For a young person who has caring responsibilities, trying to transition to, through and beyond university can be extremely challenging and for some a barrier.

Carers Trust, with the support of The National Union of Students and the National Network of Universities Supporting Young Adult Carers, has published a new guide:

This resource will enable universities and services supporting young adult carers, to gain a greater understanding of the challenges that this group of students face and how they can be better supported to access and succeed in higher education.

The resource: 

  • Draws together some of the good practice universities have already begun to develop.
  • Makes recommendations for how universities can support students across the student life cycle.
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Educational

Student Carers in Further Education

Carers Trust in partnership with NIACE has published a new guide to support students with caring responsibilities in further education colleges.
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Education
I work with: 
Adult carersYoung adult carers
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 15:30
Body: 

This new resource will enable further education colleges to gain a greater understanding of the challenges that this group of students face and how they can be better supported to remain and succeed in further education.

PDF iconSupporting Students with Caring Responsibilities: A Resource for Colleges and Services to Help Young Adult Carers Succeed in Further Education

“If I was told that I couldn’t have my phone on I would just leave college – my mum needs to be able to contact me quickly in an emergency.”
Young adult carer (taken from the Top tips for colleges and college staff supporting student carers section of the guide)

Who is the resource for?

This practical resource is designed for use by managers and staff working in further education colleges and carers services supporting young and young adult carers.

The resource: 

  • Increases awareness and understanding of young adult carers and their specific needs.
  • Outlines who young adult carers are, the challenges they face and how their caring roles can impact on their education.
  • Draws together some of the good practice that is already being developed in some colleges.
  • Makes recommendations for how student carers can be supported to sustain their participation in learning, achieve their potential and succeed.
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Toolkit

Time to Think About You

Time to Think About You is a new resource which has been co-produced with The Health Innovation Network (HIN) in South London to help carers self-identify and access support.
Area of Care: 
Primary Care
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Health carePrimary careCarers services
I work with: 
Adult carersYoung adult carersYoung carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 14:15
Body: 

The Health Innovation Network and Carers Trust have worked with carers on Time to Think About You.

Time to Think About You is a project to encourage carers to be more aware of their own health, and the support available to them at their local GP and carers services.

We have developed a range of materials for this project, including a poster and prompt cards.

You can help us to raise awareness among carers by sharing these, putting them up in your workspaces, and giving them out to any carers you may know. 

Download the Time to think about you materials

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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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Toolkit

Carers Hub: A commissioners tool for mapping local services in consultation with carers

The Carers’ Hub can be used in consultation with carers and local services as a tool to map local carer need and service provision.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsPrimary CareSecondary Care
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesEmploymentSocial careEducationCommissioning
I work with: 
Adult carersYoung adult carersYoung carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Monday, April 30, 2018 - 10:45
Body: 

The Carers’ Hub is a model of comprehensive carers support, developed by Carers Trust with assistance from the Association of Directors of Adult Social Services and funding from the Department of Health. It can be used as a resource for all those looking to commission and develop personalised services for carers.

At the centre of the Hub diagram are the outcomes of the refreshed National Carers Strategy for England. The white band represents a three-pronged approach that can be used to inform strategic planning, and the 17 spokes on the outside of the circle illustrate the complete range of interventions that every area needs in order to deliver the intended outcomes.

Using the Carers' Hub

The Carers’ Hub can be used in consultation with carers and local services as a tool to map local carer need and service provision. In order to assess what mixture of interventions might be necessary to achieve the outcomes of the National Carers’ Strategy in a local area, the first step would be to carry out consultation to establish:
  • What services are currently available.
  • Which of the National Carers’ Strategy outcomes are being met.
  • Which groups are being served.
  • What local carers and their families want.
A simple way to do this is by printing large copies of the Hub and asking carers to write comments or attach post-it notes under the interventions that are well provided locally. Then use another copy of the Hub (or different colour post-it notes) to repeat the process asking carers to indicate where there are gaps in services. 
 
You may wish to ask carers to make notes on the post-its about the quality of services and who is providing them. As a separate exercise, you may wish to ask carers to repeat the process indicating how well each of the five outcomes at the centre of the Hub are being met. Involving professionals and local service providers in the process will help to give you a complete picture of services in your area.

Local strategic planning

The Hub's three-pronged approach to local strategic planning - in the white middle band of the Hub: carer-led, identify and include and whole-area - can then be applied in order to inform the development and implementation of the most appropriate mix of interventions. 
 
Ideally, carer representatives and professionals should sit down together to analyse the messages and identify priorities, so it may be best to carry out this process at meetings (for example, of carer strategy groups or multi-disciplinary agency groups).
 
The results of the Carers’ Hub consultation process can help to inform Joint Strategic Needs Assessments, Joint Health and Wellbeing Strategies and other audit and planning processes, and maximise resources through the development of more efficient services and partnerships. The process can be repeated at a later date in order to help monitor local progress on strategy implementation.
 
Although the terminology on the Hub comes from English legislation, the rationale and process are applicable across the whole of the UK.

Further information

Download the PDF iconCarers Hub Toolkit for Commissioners (PDF, 1,241 KB).

There is also a Powerpoint version of the Hub with editable text boxes to make notes and/or compile your results.

Further details of the origins of the Hub and how to assess local services in relation to the Carers' Strategy can be found in Commissioning for Carers: an Action Guide for Decision-Makers and Commissioning Better Outcomes for Carers.

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