Parent carers

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Toolkit

Young Carers In Schools - A Toolkit for Local Authorities

Legislation into Practice: Making the Children and Families Act 2014 and the Care Act 2014 a Reality for Young Carers
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needsPrimary CareSecondary Care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Information and adviceCommissioning for carersCommissioning for young carersSocial careEducationCommissioning
I work with: 
Young carersParent carersSibling carersFamilies
Caring for: 
Young peopleChildren
Location: 
England
Date Revised: 
Tuesday, November 13, 2018 - 15:45
Body: 

A resource for local  authorities working with schools to identify and support young carers. 

This resource supports the case for the effective and economic ways that local young carers services offer both preventative and responsive support for young carers and their families. 

It sets out the case to include the Young Carers in Schools Programme in all aspects of educational support and how this would support local authorities to ensure they fulfil their statutory duties as set out in the Children and Families Act 2014 and the Care Act 2014. 

Most importantly it will ensure positive outcomes for young carers and their families. 

PDF iconLegislation into practice toolkit pdf

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PDF icon Legislation into Practice
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Guidance

Working with carers of people with mental health issues

Carers of people with mental health issues deserve support, both in relation to the people they care for, and for themselves as carers. Indeed, carers are often working long hours, in unpredictable circumstances and with little or no help, to care for those closest to them.
Area of Care: 
Mental Health
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesSocial careCommissioning
I work with: 
Adult carersParent carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Thursday, May 10, 2018 - 13:45
Body: 

Carers of people with mental health problems come into contact with a range of health and social care professionals. Both in the community and in healthcare institutions, carers routinely link with psychiatrists, social workers, nurses, GPs, voluntary and charity staff, as well as many other workers.

Invaluable aid to health professionals

Carers of people with mental health issues deserve support, both in relation to the people they care for, and for themselves as carers. Indeed, carers are often working long hours, in unpredictable circumstances and with little or no help, to care for those closest to them. But in this way, carers are often an invaluable aid to health professionals' work, giving an experienced insight into the care and needs of the service user.

However, there are always challenges working with, and involving carers of people with mental health issues. Dealing with issues such as confidentiality, disputes over care and treatment, and balancing the different needs of carers and service users are common experiences for many healthcare professionals. In this sense, professionals also need support, and the necessary resources to work in partnership with carers. 

Overview of issues

An overview of the issues faced by carers has been produced by Carers Trust, as well as an outline of the key changes which we would like to see happen nationally. 

Making Respite Real in Mental Health

Carers of people with mental health problems benefit from a break from their caring role just like other carers, however, research undertaken by Carers Trust showed that many carers, service users and professionals were unaware of how to respite and carer breaks. Carers Trust has developed guidance for professionals, carers and service users to promote the value of respite, the need for it to be planned for and how to access it.

Download the leaflet  Making Respite Real in Mental Health.

The guidance is suitable for carers, professionals and service users.

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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.

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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 in Primary Care Learning Event

Carers Trust hosted the Supporting Carers in Primary Care Learning Event in November 2014. The event brought together over 100 professionals from across the sector who work to identify and support carers across primary care.
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health carePrimary careMental health careHealth and wellbeingCarers servicesInformation and adviceCommissioning for carers
I work with: 
Adult carersParent carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, May 4, 2018 - 09:00
Body: 

Carers Trust hosted the Supporting Carers in Primary Care Learning Event in November 2014. This annual event was funded by the Department of Health as part of the wider Supporting Carers in Primary Care programme. 

The large scale event brought together over 100 professionals from across the sector who work to identify and support carers across primary care. 

The day provided an excellent opportunity for sharing information and good practice and the additional networking hour at the end of the day provided the ideal opportunity for delegates to reflect on what they had learnt together. The  evaluation feedback demonstrates that delegates found the day both informative and useful.

The programme

Rick Bolton, who cares for his four-year-old son led the day, sharing his account of what being a carer means to him. Delegates heard from a variety of expert speakers including Wendy Nicholson, Professional Office for School and Community Nursing at the Department of Health, Jen Kenwood, Head of Patient Experience – Community, Primary and Integrated Care at NHS England and Moira Fraser, former Interim CEO and Director of Policy at Carers Trust, as well as taking part in a selection of workshops. 

View the presentations

The event presentations will be useful for staff from carers services and other organisations who support carers in primary care.  You can also preview what was covered in the workshops. 

Supporting Carers in Primary Care Learning Event – view the presentations

 

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Good Practice

Supporting Carers in Primary Care Learning Event – presentations

View the presentations from the Supporting Carers in Primary Care Learning Event that Carers Trust hosted in November 2014.
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health carePrimary careMental health careHealth and wellbeingCarers servicesInformation and adviceCommissioning for carers
I work with: 
Adult carersParent carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Friday, May 4, 2018 - 09:00
Body: 

These presentations will be useful for  staff from carers services and other organisations who support carers in primary care.  You can also preview what was covered in the workshops. 

Morning plenary presentations 

Policymaking to primary care practice making it happen at the sharp end (Moira Fraser, former Interim CEO and Head of Policy, Carers Trust)

Moira Fraser explained that much needs to be done to turn the rhetoric into reality and overcome the barriers facing carers organisations working with the NHS to identify carers. 

Cosying up: how CCGs can partner carers (Dr Michael Taylor, Lead GP for Carers Services at Heywood, Middleton and Rochdale CCG)

Find out which strategies Dr Michael Taylor recommends to improve support for carers by working in partnership with CCGs.

RCGPs supporting carers in general practice programme (Dr Nazia Mohammed, Clinical Champion for Carers, RCGP)

Dr Nazia Mohammed provided an overview of the College’s work to improve carer identification and support in general practice.

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Morning workshops 

Delegates were able to choose between the following morning workshops:  

How to network effectively across the health economy to maximise support for carers (Michelle Pilling Lay, Advisor Quality & Patient Experience, East Lancashire CCG)

An overview of the current landscape in health and the opportunities to maximise the impact of the Primary Care Identification Worker.

GP audits and GP investors in carers standard accreditation (Louise Shaw, Primary Care Lead & Carer Assessment Support worker and Hazel Wright, Adult Services Manager, Northampton Carers)  

Outlines the successes and challenges of co-produced primary care Interface work over five years with specific focus on the implementation of annual audits and the launch of Northamptonshire Investors in Carers Standard accreditation.   

Developing and maintaining a carers links network in Salford (Julia Ellis, former Development Manager for Primary Care and Outreach, Carers Trust)

Provides an overview of the successful and well-established Carers Links Network in Salford. Learn how the service that provides 300 referrals per annum from the primary care sector was established, developed and maintained.

Effective monitoring and evaluation tools to assess the impact of emotional support services for carers (Clare Edwards, Carer Health Worker, West Cumbria Carers)

Explores how to effectively assess the impact of services in supporting carers’ mental wellbeing using questionnaires developed by NICE.  

We also held a workshop on young carers which was  led by Rick Bolton, Dr Nazia Mohammed and Daniel Phelps. It was agreed we all need to work together to generate a culture of change and focus on developing good long term relationships to encourage lengthy engagement. Solutions discussed included:

  • A whole family approach - ensuring young carers are identified when parents present with chronic illness for example.
  • GP awareness training - the same read code would be used for young carers as adult carers.
  • Remembering that primary care is much wider than GP surgeries.
  • NHS employees’ awareness training.
  • Continued identification through schools / colleges.
  • Identifying young carers early through health visitors and children’s centres.
  • Importance of relationships such as a long-term relationship between pharmacy staff and families.
  • Professionals having the awareness of young carers and the confidence to ask appropriate questions.
  • Important to find champions with passion to drive work forward in own establishments.

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Afternoon plenary presentations

Community pharmacy - how can it help support carers (Alastair Buxton, Head of NHS Services at PSNC) 

Describes the community pharmacy services which can support carers and the Carers Trust / Pharmaceutical Services Negotiating Committee pilot to test carer identification in community pharmacies in England.

Supporting the health and wellbeing of carers (Wendy Nicholson, Professional Officer for School and Community Nursing at the Department of Health)

Demonstrates that community nurses are keen to extend their understanding of carers’ needs and to ensure carers’ wellbeing needs are met.

Further guidance on supporting adult carers through community nursing can be found on the Supporting adult carers through community nursing page.

NHS England commitment to carers - can it make a difference (Jen Kenwood, Head of Patient Experience – Community, Primary and Integrated Care, NHS England)

Described NHS England’s commitment to carers, which comprises 37 commitments spread across eight key priorities, from raising the profile of carers to person-centred coordinated care. 

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Afternoon workshops

Delegates were able to choose between the following afternoon workshops:

The carers health team: a methodology to prevent carers falling between the gaps in our systems (Geoff Coleman, Chief Executive, Crossroads Care South Central)

Explored using a collaborative approach to support carers involving a partnership between Crossroads Care, Carers Health Team (NHS) and Carers Support West Sussex.

Carer awareness training for pharmacies (Anne Cole, Regional Manager South West, CPPE)

A guide to the new carer-awareness training resources for pharmacy teams co-produced by the Centre For Pharmacy Postgraduate Education (CPPE) and Carers Trust to improve the identification and referral of carers and how this fits into the Carer Friendly Pharmacy Pilot.

Supporting carers through integrated care (Helen Brown, Health Development Lead Carers Resource, Harrogate) 

Evidences the value of providing support for carers by establishing a service for carers within Integrated Care Teams. It highlights the success of the service in identifying and reaching out to ‘hidden’ carers and the benefits to all the multi-disciplinary professionals involved.

Supporting carers through e-learning for community nurses (Jennie Whitford – Carers Project Manager, QNI) 

Explores the digital Carers Resource for community nurses which has been developed by The Queen's Nursing Institute in collaboration with nurses working in the community.

 

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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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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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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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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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