Hospitals

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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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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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How-to Guide

Triangle of Care Toolkit - A Resource for Mental Health Service Providers

This resource is designed for services implementing the Triangle of Care, it is based on what has worked and what has prevented successful implementation in other organisations. It includes guidance, tips and good practice to guide professionals and carers.
Area of Care: 
Mental HealthAlcohol MisuseSubstance MisuseSpecialist servicesSecondary CareAcute CareDementia care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health careHospitalsMental health careCarers servicesCommissioning for carersCommissioning for young carers
I work with: 
Adult carersYoung adult carersYoung carersParent carersSibling carersFamilies
Caring for: 
AdultsOlder adultsYoung peopleChildren
Location: 
England
Date Revised: 
Monday, November 9, 2015 - 15:30
Body: 

Introduction

The Triangle of Care was launched in 2010 and was developed by carers who were supporting someone who regularly needed acute inpatient mental health services. It identified six key standards that if in place would mean that the carer would be better involved and supported by mental health services.

Since the launch, Carers Trust has led on the programme in England developing the original guide so that it can be implemented across all mental health services including specialist, forensic, children’s, older people’s and community.

In 2013 the Triangle of Care membership scheme was launched to enable mental health providers to receive formal recognition of their commitment to cultural change and carer involvement. Since its launch, 31 NHS trusts have joined the scheme and their experience, knowledge, good practice and pitfalls have been identified to help develop a toolkit for implementation of the Triangle of Care.

You can download the full toolkit here, or review the appropriate section online: PDF iconTriangle of Care Toolkit

The Triangle of Care Toolkit – A Resource for Mental Health Service Providers

The experiences of the 31 trusts who have joined the Triangle of Care membership scheme between 2013 and April 2015 have been extensive. Carers Trust has been able to identify good practice where it has been implemented which has ensured a more successful implementation of the Triangle of Care. These experiences have been collated to develop a toolkit. This toolkit aims to support trusts who are at the beginning of their Triangle of Care journey, those who are yet to begin and those who are already well progressed but want to learn from their peers and ensure a legacy of cultural change.

The toolkit focuses on the different elements that trusts should consider when implementing the Triangle of Care across their services and more information on each area can be found in the toolkit:

  • Strategic buy-in and support
  • Commissioning and reporting levers including Care Act 2014
  • Staff promotion and buy-in
  • Carer partners and Service user partners
  • Carer champions
  • What good looks like and celebrating good practice
  • A willingness to be honest and encouraging the value of honesty and frequently asked questions

These elements have been identified as important to successful implementation if they are in place. While not all the elements are in place in all trusts many trusts do have a majority in place and this has helped their journey be more successful.

Downloads: 
PDF icon The Triangle of Care Toolkit – A Resource for Mental Health Service Providers
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Guidance

Triangle of Care for Dementia

The Triangle of Care for Dementia was developed in partnership with the Royal College of Nursing and in consultation with carers, people with dementia and professionals. It is based on the original Triangle of Care and is aimed at acute care hospitals.
Area of Care: 
Mental HealthSpecialist servicesDay centreRehab CentreHospitalCare homesSecondary CareAcute CareDementia care
Outcomes: 
PreventionWellbeingHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health careHospitalsMental health careHealth and wellbeingCarers servicesCommissioning for carersCommissioning
I work with: 
Adult carers
Caring for: 
AdultsOlder adults
Location: 
England
Date Revised: 
Tuesday, June 9, 2015 - 09:30
Body: 

The Triangle of Care Carers Included: a Guide to Best Practice for Dementia Care

In 2013 Carers Trust worked with the Royal College of Nursing (RCN) to adapt the Triangle of Care to meet the needs of carers of people with dementia when the person they cared for was adapted to a general hospital. A stakeholder day was held where carers, people with dementia and professionals were consulted and provided feedback on the Triangle of Care. 

Carers Trust and the RCN worked together in 2016 to update the guide.

The new guide and self assessment tool were launched in November 2016, this is specifically aimed at acute hospital wards and services where a person with dementia may be admitted but their dementia is not the reason for their admission.

The guide is to enable professionals to look at how they can identify and support carers ensuring that the person with dementia is included and receives the best care outcomes as well as positive outcomes for the carer.

PDF iconThe Triangle of Care Carers Included a Guide to Best Practice in Dementia Care.pdf

FileTriangle of Care for Dementia Self-Assessment Tool (Word Version)

The Triangle of Care Carers Included: a Guide to Best Practice for Dementia Care in Scotland

To reflect the Scottish context, the Triangle of Care has been adapted to suit the Scottish legislation, initiatives and policies around dementia. The Scottish version has been a collaborative effort between Carers Trust Scotland, Royal College of Nursing Scotland, NHS Greater Glasgow & Clyde, University of
Stirling Dementia Services Research and Dementia Carers Voices.

 PDF iconThe Triangle of Care Carers Included a Guide to Best Practice for Dementia Care in Scotland.pdf.

The Triangle of Care Carers Included: a Guide to Best Practice for Dementia Care, Wales Edition

In Wales, the Triangle of Care has been adapted to reflect Welsh legislation, good practice examples and policies around dementia in secondary care. The Wales edition has been funded by the Royal College of Nursing and adapted for use in Wales by Carers Trust Wales.

 

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Guidance

Young carers and parental substance or alcohol misuse – examples of good practice

Area of Care: 
Alcohol MisuseSubstance Misuse
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsCarers servicesSocial careEducation
I work with: 
Young carers
Caring for: 
AdultsOlder adults
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 10:15
Body: 

Examples of good practice

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

The PDF iconout of hours family 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.

Support for young people affected by a parent’s drug or alcohol misuse

Time4Us identifies and supports young people with a parent who is misusing drugs or alcohol. The project also supports the wider family by providing information and support to parents to access other available services.

Supporting families affected by drug and alcohol misuses

PDF iconExplore Family in Nottingham delivers both low threshold and structured interventions for anyone affected by the drug or alcohol misuse of someone else in their family. The service works with children within the family (some of whom will be young carers), any non-misusing parent and the misusing parent when appropriate.

Further information

The Association of Directors of Adult Social Services and Association of Directors of Children’s Services produced Signposts, See Me, Hear Me, Talk to Me – Talk to My Family as Well in 2011.

The Office of The Children's Commissioner for England produced the report Silent Voices – Supporting children and young people affected by parental alcohol misuse in 2012.

Downloads: 
PDF icon Explore Family in NottinghamPDF icon Out of hours family project
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Guidance

Young carers and parental substance or alcohol misuse

Children of parents who are addicted to drugs or alcohol may experience chaotic lives which lack routine and may often worry about the safety of their parent.
Area of Care: 
Alcohol MisuseSubstance Misuse
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsCarers servicesSocial careEducation
I work with: 
Young carersFamilies
Caring for: 
AdultsOlder adults
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 10:15
Body: 

The statistics 

  • 22% of young people under 16 in the UK (2.6 million) live with a hazardous drinker.
  • In the UK, 335,000 children live with a drug dependent parent.

How does parental substance or alcohol misuse affect young carers?

Not all young people who live in families where there is drug or alcohol misuse have a caring role or experience difficulties at home. Those who do may undertake physical tasks, such as domestic chores, dealing with bills, or nursing a parent suffering from drug or alcohol withdrawal, but it is often emotional support that is most prevalent in their caring role.

Children of parents who are addicted to drugs or alcohol may also experience very chaotic lives which lack routine and may often worry about the safety of their parent and fear what, or who they will find on returning home from school or college. Young carers from these families may have had to deal with the aftermath of alcohol and substance misuse in their home.

Parents affected by substance misuse may experience impaired patterns of parental care. This in turn may lead to a higher risk of physical neglect or abuse, poor or limited diet, and missed health appointments, such as the dentist or vaccinations.

Research in 2004 found that where children are caring for a relative with drug or alcohol problems, the incidence of missed school and educational difficulties were considerably higher than for other young carers. 34% were missing school (compared to 27% of young carers) and 40% in total were missing school or had other indicators of educational difficulties (source: Dearden C. & Becker S. (2004) - Young Carers in the UK: the 2004 report - Carers UK and The Children’s Society).

Emotions and thoughts

Young carers who care for a parent affected by substance or alcohol misuse may experience a whole range of differing emotions and thoughts: They may become angry, confused and ashamed or even feel guilty. They may feel like their parent loves drugs and/or drink more than them and they may get teased or bullied because of a family member’s addiction. They may feel very isolated and feel unable to invite friends home.

Support

Fear of stigmatisation and fear of intervention by services can act as barriers to identification and young carers receiving support. Services and support must recognise these particular issues faced by these young people and gain the trust of families and young people in order to encourage openness and engagement.

Like many young carers, this group of young carers need someone to talk to and for their needs to be understood. It helps when they realise that there are other young people in similar circumstances. They also need to understand that they are not responsible for their parents’ choices and that it is not their fault. Early intervention is key.

Dual diagnosis

Some parents may be affected by both substance or alcohol misuse and have a mental health condition. It is, therefore, important to maintain effective links between all agencies involved to provide extra support should they need it.

Further information

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Key Info

Who are young adult carers?

Young adult carers are transitioning from childhood into adulthood, and they often go unidentified and unsupported.
Outcomes: 
Carer awarenessIdentifying carers
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesEmploymentSocial careEducationCommissioning
I work with: 
Young adult carers
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 15:15
Body: 

Young adult carers are transitioning from childhood into adulthood. There is no legal age definition for young adult carers, although Carers Trust’s support work focuses on young adults aged between 14 and 25 who care, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

Young adult carers often go unidentified and unsupported, but the negative impacts of caring on young adults, which often increase as they grow older, can have a negative and enduring impact on their own physical health, mental health, education and employment opportunities.

How many young adult carers are there in the UK?

The 2011 census identified more than 375,000 young adult carers in the UK, but this is believed to be a huge underestimate of the true numbers as many young adults hide their caring role or do not identify themselves as carers.

Why do young adult carers need support?

Young adult carers take on significant additional responsibilities which can make the typical transitions from childhood into adulthood especially complex and challenging.

The difficulties they experience as a result of their caring role can have significant and long term negative impacts on their confidence, socialisation, their engagement with education and employment and their overall physical and emotional wellbeing.

View the PDF iconwho are young adult carers infographic to find out more about young adult carers and what they do.

Many young adult carers experience issues with their educationemployment and health.

Further information

Downloads: 
PDF icon Who are Young Adult Carers?PDF icon Young Adult Carers Experiences
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Guidance

Preventing Crisis for Carers - Importance of Monitoring and Evaluation

The Moffat Charitable Trust and Carers Trust Scotland were increasingly aware of the importance of promoting early identification, intervention and support for carers to prevent unnecessary crisis.
Area of Care: 
Secondary CareAcute Care
Outcomes: 
PreventionCarer awarenessIdentifying carers
I work in: 
Health careHospitals
I work with: 
Adult carers
Caring for: 
AdultsOlder adults
Date Revised: 
Monday, October 27, 2014 - 11:15
Body: 

Preventing Crisis for Carers (Moffat programme) - Role of Glasgow Caledonian University

The Moffat Charitable Trust and Carers Trust Scotland were increasingly aware of the importance of promoting early identification, intervention and support for carers to prevent unnecessary crisis, ensuring carers are properly supported as key partners in the provisionof care and preventing an adverse effect on their health and well-being. 

Importance of Monitoring and Evaluation

The Moffat Programme was designed to achieve this aim by creating effective partnership working between the NHS and social work staff, local carer centres and carers. This study’s intention was to find out what aspects of the programme carers, and those providing services to carers, thought were most helpful and why. 

Shared learning and evidence of the impact of the approach were central to the programme achieving its ambition of making longer term changes to practice and improved outcomes for carers.

Evaluation Team

Glasgow Caledonian University was commissioned to work with the pilot sites during the two years of the Moffat Programme. Dr. Tim Kelly and Dr. David Watson were both members of the School of Health at Glasgow Caledonian University at the time with extensive research experience including working with carers.

Methods

Carers in the each of the pilot areas were asked to PDF iconcomplete a questionnaire looking at their experiences of services provided in both the hospital and community. 

Health and social care staff were asked to complete a questionnaire looking at the service they provide and the training they have undertaken in relation to carers. 

Key stakeholders were asked to take part in an interview or focus group at intervals during the pilot programme. These interviews and focus groups looked at what was being done to achieve the aims of the pilot project across each site.

Results

The results formed the basis of the final evaluation report and the evidence was shared to enable good practice to be rolled out beyond the pilot areas of the programme.  

Read the PDF iconfinal evaluation report, or a PDF iconsummary of the report

Further Developments

For more information on the programme and how it has developed please contact Carers Trust Scotland on scotland@carers.org or phone 0300 123 2008.

Read about the Equal Partners in Care (EPiC) project.

Downloads: 
PDF icon Interview and Focus Group SchedulePDF icon Professional staff information sheet
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