Health and wellbeing

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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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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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Research

Full of Care Report - Young Carers in Wales 2009

In 2009 the Children's Commissioner at the time, Keith Towler, launched new research and recommendations for Young Carers Services in Wales.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Primary careHealth and wellbeingCommissioning for young carersSocial careEducationCommissioning
I work with: 
Young carers
Location: 
Wales
Date Revised: 
Friday, May 4, 2018 - 10:15
Body: 

The report, entitled Full of Care, aimed to show the barriers young carers face achieving the rights laid out by the United Nations Convention of the Rights of the Child, such as the right to education, to relax and play and to have their views respected. 

The document included the research project All Right Gov' that Powys Carers Service carried out in Summer 2008, travelling all over Wales to meet other young carers projects and listening to their experiences.

The report made a number of recommendations to both Welsh Government and local service boards as well as local authorities, health and The Department of Children, Education Lifelong Learning and Skills.

Early identification and intervention

The fact that 54% of young carers in this survey felt that they only got support in a crisis underlines the importance of early identification and intervention. However, the young carers who took part in this survey were those who had been identified and were receiving support. 

Much of the existing guidance is intended to prevent crises arising through early identification and intervention. It is clear though that there is often a considerable gap between national policy and local practice.

The message ‘Too little, too late’ still resonates today.

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Guidance

Flu Vaccinations for Carers campaign - useful resources

NHS Employers and Carers Trust produced flu campaign guidance and resources in 2014 which healthcare staff can download .
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Primary careHealth and wellbeingPharmacy ServicesCarers servicesInformation and adviceCommissioning for carersSocial careCommissioning
Location: 
England
Date Revised: 
Friday, May 4, 2018 - 09:15
Body: 

Help reach carers across the whole community

NHS Employers and Carers Trust  produced flu campaign guidance and resources in 2014. Carers Trust also produced a set of resources aimed to be used by a wide range of organisations to as well as individuals to encourage flu vaccination uptake among carers. The resources also encourage carers to get in touch with Carers Trust for details of their local carer service. 

The Word versions of each resource were designed to be customised to include your organisation’s own logo.

Further details

For more information about the Flu Vaccination Campaign for Carers, please email Carers Trust.

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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

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 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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Educational

About Time Grant Evaluations

Following the successful delivery of two About Time Grant programmes, Time for Change and Take Action and Support which addressed issues that can lead to young adult carers becoming disengaged from society, independent evaluations of the two programmes have been produced.
Area of Care: 
Mental HealthPhysical illness
Outcomes: 
PreventionWellbeingIntegrationCarer awarenessIdentifying carersCarers in employment
I work in: 
Primary careMental health careHealth and wellbeingCarers involvementCarers breaksInformation and adviceCommissioning for carersEmploymentSocial careEducationCommissioning
I work with: 
Young adult carers
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
Whole UK
Date Revised: 
Monday, February 12, 2018 - 10:00
Body: 

Key points: 

The objectives of the evaluations were to:
  • Provide an overall evaluation of all data to assess the progress of funded projects against the aims and objectives of the About Time grant programmes and of the wider About Time programme.
  • Conduct a qualitative study with funded projects to identify effective strategies and approaches for supporting and enabling young adult carers.
  • Provide a focused evaluation of data derived from outcomes measurement tools designed to measure the extent of care undertaken, the positive and negative impacts of caring for young adult carers and changes in their lives because of taking part in the funded intervention.
  • Evaluate the impacts of programme delivery and Carers Trust grant making processes on funded organisations.

About Time evaluations

The evaluations of the Time for Change and Take Action and Support grant programmes were structured in three phases and each had its own evaluation report with an overview of the whole programme also produced.

Phase one: February–October 2015

 

Phase two: November 2015–November 2016

PDF iconAbout Time Grant Programmes Evaluation Report Phase 2 November 2015 to November 2016 Executive Summary PDF (177 KB)

PDF iconAbout Time Grant Programmes Evaluation Report Phase 2 November 2015  to November 2016 PDF (323 KB)

Phase three: December 2016–October 2017

PDF icon About Time Grant Programme Evaluation Report Phase 3 December 2016 to October 2017 Executive Summary PDF (251 KB)

PDF icon About Time Grant Programme Evaluation Report Phase 3 December 2016 to October 2017 PDF (483 KB)

Overview Report

PDF icon About Time Grant Programme Evaluation Overview Report PDF (519 KB)

Key achievements and learning from the programmes include:

  • Around 7,200 young adult carers have benefited from 114 projects delivered by Carers Trust Network Partners, exceeding the original target of 6,200 young adult carers.
  • Programmes provided support to significant numbers of young adult carers for the first time, with over half of the young people participating being new to Carers Trust Network Partners.
  • Programmes developed a flexible response to the needs of young adult carers, including individual support, group activities and access to small grants for individuals, alongside the development of partnerships.
  • The programme design involved young adult carers and Network Partners, ensuring programmes reflected specific needs across UK.
  • Projects have been successful in reaching a representative group of young adult carers and there was a good geographic spread of projects across the UK.
  • Carers Trust has enabled Network Partners to deliver effective projects by being flexible about delivery approaches and providing good quality support, information and training.
  • The Carers Trust Network has a unique role in supporting the needs of young adult carers.
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Toolkit

Toolkit for Initial Teacher Education (ITE) Providers

This toolkit provides essential tools, templates and guidance for ITE providers who already include young carers as a key topic within their training programmes and ITE providers who are developing their training content regarding young carers.
Area of Care: 
Mental HealthPhysical illnessAlcohol MisuseSubstance MisuseSpecial education needs
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health careMental health careHealth and wellbeingCarers servicesCarers involvementInformation and adviceCommissioning for young carersSocial careEducationCommissioning
I work with: 
Young adult carersYoung carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Wednesday, April 19, 2017 - 13:15
Downloads: 
PDF icon Supporting Young Carers in Schools: A Toolkit for Initial Teacher Education Providers
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