Carers

Carers are people who provide (or intend to provide) a substantial amount of care on a regular basis to people who require support to maximise and/or maintain their independence (Department of Health, 2008). Although ‘substantial’ and ‘regular’ are not defined in legislation or guidance, in many cases the potential impact is self-evident.

Recognising carers and the contribution they make to society is important for raising their profile and identifying better ways of helping them to help others. Historically the needs of carers have been overlooked. Whilst this situation is improving, many carers remain socially excluded, suffer from caring-related ill-health and, once they have ceased caring, find themselves in a difficult economic position, often with little or no pension provision.  This can lead to the carers needing to access health and social care services for themselves and may impair their ability to continue providing care to the cared for person.

The economic value of unpaid care is estimated to be £87 billion nationally (Carers UK & University of Leeds, 2011).  For Hartlepool this would be around £172 million.

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Last updated: 2018-02-22 16:27:45
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1. What are the key issues?

The Hartlepool Carers Strategy 2011 identifies nine priorities areas for action:

  1. Information and communication
  2. Access to health services
  3. Access to financial resources
  4. Support with assessments
  5. Remove discrimination of carers
  6. Flexibility for a life of your own
  7. Training and support to care
  8. Emotional support
  9. Work, education and leisure.

 

Last updated: 27/09/12

2. What commissioning priorities are recommended?

2012/01
Identify carers so that effective support and information can be made available at the time when it is needed. This includes identification of carers in primary care.

2012/02
Enable carers to access the right information in the right place at the right time.

2012/03
Promote representation from “hard to reach groups” and should include people whose first or only language is not English, people from BME communities and deaf people.

2012/04
Build on the work already done to identify carers in primary health care to ensure all carers are known to their GPs.

2012/05
Improve emotional support and mental health of carers by improving support regarding well-being, self-help and mutual support, identify more options to have a ‘life of one’s own’ and improve the range of opportunities for short breaks, respite, and activities where the cared for and carer can enjoy together and enable appropriate medical and psychological support.

2012/06
Improve access to work, education and leisure for carers by working with employers and educational institutions.

2012/07
Improve data collection locally to better identify carers and the amount of support they offer so that a more accurate figure is obtained.

Last updated: 27/09/12

3. Who is at risk and why?

The National Carers Strategy (DH, 2010a) identified the needs of carers in five main areas:

  • Carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role.
  • Carers will be able to have a life of their own alongside their caring role.
  • Carers will be supported so that they are not forced into financial hardship by their caring role.
  • Carers will be supported to stay mentally and physically well and treated with dignity.
  • Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive and to enjoy positive childhoods.


All carers are at risk of poor health and well-being due to their caring role.  Carers of different client groups (i.e. different types of illness of the cared for person) face different challenges but these challenges can put them all at risk of poor health and well-being. However, some have an increased risk of poor physical and mental health.

Age
The 2001 Census shows that the peak age for caring is 50 to 59. More than one-in-five people aged 50-59 (1.5 million across the UK) provide some unpaid care (Carers UK, 2012).

Young carers
There are 175,000 young carers in the UK, of whom 13,000 care for over fifty hours a week (2001 Census). Some carers can be as young as 5 years old. Younger carers encounter specific problems, for example 68% of young carers report that they are bullied at school.  Young carers, many of whom are providing inappropriate levels of care, are at risk of not only poor health and well-being, but their caring role can also impact on their emotional and social development and on their education.

Working age carers
There is little information about working age carers although we do know most carers fall into this age group.  Nationally, just less than one in eight (13%) adults aged 16 to 64 in full-time employment care for a sick, disabled or elderly person. However, the prevalence of caring is highest of all among the economically inactive, just over one in five (21 per cent) of whom were spending time caring for someone.  About half of carers spending the most time (between 20 and 49 hours) caring per week were in employment in 2001. The challenges of combining paid work and informal care seems to particularly affect those undertaking substantial hours of caring per week (DWP, 2009).

Older carers
This group of carers is at higher risk of poor health as they have the additional problems associated with ageing.  A survey of experiences of older carers showed that 65% had long-term conditions or disabilities themselves, and 69% said their caring role had an adverse effect on their mental health (Princess Trust for Carers, 2011).

Gender
In the UK, more women than men have a caring role; 58% of carers are women and 42%  are men (Carers UK, 2012).

Socioeconomic status
Over one in five (21%) economically inactive people are carers, a rate that is more than 50% higher than for people in full-time employment (Department of Work and Pensions, 2009).
For carers who give up work there will be an impact on pension contributions and an increased risk of poverty in later life.  Amongst carers:

  • 45% are depressed about their financial position,
  • 62% have no savings,
  • 15% have turned to drink or drugs to cope with their financial situation (Princess Royal Trust for Carers, 2010).

The skills of carers are lost to the workforce and economy.

Ethnicity
Carers in the BME community can be reluctant to seek help, are often unaware of the support available and can become isolated in their role.  Bangledeshi and Pakistani men and women are three times more likely to provide care compared with their white British counterparts (Carers UK, 2012).

Carers providing care for a substantial number of hours per week
Increased time spent caring can increase the risk of poor health as the stress involved may increase and the carer has less time to consider their own health. This is particularly relevant to older carers whose health is at risk due to the normal ageing process.

Last updated: 27/09/12

4. What is the level of need in the population?

In the 2001 census, 9,853 people from Hartlepool identified themselves as carers (11.1% of the population and similar to the national average).  A total of 2,680 of those carers identified themselves as providing over 50 hours of care per week (3% of the population). More recent information is not currently available but will be when the findings from the 2011 census are published.

The majority of carers are over 50 years old. The Projecting Older People Population Information System (POPPI) estimates that 11.3% of people aged 65 years and over living in Hartlepool identify themselves as carers. For those aged 65 to 74 years where the prevalence is highest, 14.6% are carers. These are similar to regional and national rates.

The amount of support provided by men and women is disproportionate with women in Hartlepool providing 60% of care as opposed to 40% by men. This ratio is the same for the Tees Valley and the North East of England but differs slightly from  England and Wales as a whole (58% women and 42% men).

In the 2001 census 2,706 people between the age of 18 and 64 stated that they had a moderate or serious personal care disability (Projecting Adult Needs and Services Information, PANSI). At the same time 4,840 people aged 65 years and over stated that they were unable to carry out at least one personal care task themselves (POPPI). The vast majority of these were aged 75 years and over.   These two definitions are slightly different as the figures are drawn from separate data bases. However the combined finding is that there are over 7,500 people in Hartlepool who need the support of carers to enable them to carry out activities of daily living.
 

Last updated: 27/09/12

5. What services are currently provided?

Adult carers

  • Carers Information Service: an information service which co-ordinates and directs carers to available training.
  • Carers awareness training for professionals.
  • GP carers project to increase identification of carers for primary care.
  • Hartlepool Carers, the local voluntary sector organisation for carers provides:
    • A single contact focusing on home-based support and personalisation.
    • A Carers Card scheme where carers are able to claim discount on purchases and services from local suppliers.
    • Emotional and practical support for carers.
  • Continuous development of a carers self-directed assessment questionnaire (CSDAQ) and carers resource allocation system (CRAS).
  • A carers grant supports the positive promotion of carers in Hartlepool, focusing on Carers’ Rights Day and Carer’s Week.
  • The Carers Strategy Group allocated funding to projects that support carers.
  • Support for carers of people with dementia is offered through the “Dementia Café” and carers group by Hospital of God.
  • Carers can access carers’ Personal Budgets and use them in the form of “Direct Payment” from the local authority.

Younger carers
The Young Carers Project element of Hartlepool Carers, a local voluntary sector organisation, provides the service to young carers. Children and young people access the Young Carers Project through a range of sources, typically through self-referral or a referral from a number of statutory agencies or voluntary sector organisations.  The support services delivered by the Young Carers Project that have evolved via this partnership are:

  • One-to-one support for young carers and their parents / carers (advice, assistance, practical and advocacy);
  • Family support;
  • Themed group work (junior and senior groups);
  • Holiday and respite activities (access to and respite);
  • Volunteer services;
  • Counselling;
  • School liaison and one-to-one work;
  • Transitions for 16 to 19-year-olds (education, employment, training and support and link to Adult Services);
  • Support young carers to attend regional events and the national young carers’ convention;
  • Raising awareness of young carers and the issues that affect their lives.
     

 

Last updated: 27/09/12

6. What is the projected level of need?

By 2030, the number of people aged 65 and over providing unpaid care to a partner, family member or other person, by age, is projected to rise from 1,696 to 2,418 (POPPI). Comparable figures are not available for people aged 18 to 64 years or younger carers. However older carers are the largest group by far.

 

2011

2015

2020

2025

2030

Aged 65+ not providing care

12,638

13,891

15,029

16,414

18,416

Aged 65+ giving 1 to 19 hours care per week

703

772

838

889

1,004

Aged 65+ giving 20 to 49 hours care per week

206

226

243

258

290

Aged 65+ giving 50+ hours care per week

787

863

932

998

1,124

Total aged 65+ giving some care

1,696

1,861

2,013

2,145

2,418

 

In the same age group (65 and over) the number of people in Hartlepool needing assistance with personal care tasks is predicted to increase by 20% by 2020 and 50% by 2030 (POPPI).

 

2011

2015

2020

2025

2030

Population aged 65 and over unable to manage at least one self-care activity on their own

4,957

5,433

5,938

6,617

7,423

 

For people aged 18 to 64 who have a moderate or serious physical disability the number fluctuates over the next two decades.  There is a forecast increase of 2.5% by 2020, but it is expected to be 2% below the 2011 number by 2030 (PANSI). This indicates that the number of people in this category will not grow at the rate for older people.

 

2011

2015

2020

2025

2030

Total population aged 18-64 predicted to have a moderate or serious physical disability

5,817

5,805

5,954

5,926

5,698

 

 

Last updated: 27/09/12

7. What needs might be unmet?

Identification of Carers
The local authority carried out 1,538 carer assessment during 2010/11. Hartlepool Carers is in contact with approximately 700 other carers. However the 2001 census shows 9,853 people who identified themselves as carers (11% of Hartlepool’s population). It means that potentially there are over 7,600 carers not in contact with either formal or voluntary support. This figure is likely to increase when the results of the 2011 census are known.

Even if the number of carers in the 2001 census who said they carried out more than 50 hours a week of caring is used (2,680), this still exceeds the number known to the local authority  and key carers support agency by more than 400.

The Hartlepool Carers Strategy identifies the need for appropriate information, tailored to differing caring situations such as:

  • new carers;
  • those carers who are coping but need to be kept up to date with what support and particularly finances may be available ;
  • carers who are now finding it hard to cope or where circumstances are deteriorating.

This information needs to include benefits and financial advice including working tax credits.

More needs to be done to identify younger carers particularly, but not exclusively, those whose parents are involved with substance misuse or have mental health issues.  Schools in particular should be aware of the needs of child carers.

Adequate support with assessment
Anecdotally, many carers report that they are not aware that they have had a carer’s assessment even though a carer’s assessment has been recorded (source: comments collected during the consultation on the Carer Strategy in 2010/11). A robust assessment is the gateway to carer support. The new Carers Self-Directed Assessment Questionnaire (CSDAQ) will support this following implementation in the summer of 2012.

Access to health services and awareness of carers within general practices
Awareness of carers within primary health care has markedly improved following a local initiative rising from 100 to 700 cares registered with their GP (source: - Hartlepool Carers GP registration programme).  However, this is well short to the number known to the local authority and Hartlepool Carers.

Health services need to be aware of the importance of carers’ health and well-being and their role as an expert regarding the person they care for, but also the risk of neglecting their own health. Identification of carers in general practices is now a requirement of the Quality and Outcomes Framework (QOF).

The emotional support and mental health of carers
The mental health of carers has been highlighted as an issue where further support is needed. The Carers Strategy action plan identifies that further work is needed to:

  • improve support regarding well-being and self-help;
  • identify options for mutual support;
  • identify more options to have a ‘life of one’s own’;
  • improve the range of opportunities for short breaks, respite, and activities that the cared for and carer can enjoy together;
  • get appropriate medical and psychological support.

Deaf carers and carers from BME communities
Recent consultation indicates that carers in the deaf community find it harder to access information and support.
Hartlepool has a relatively small population from black and other ethnic minority communities, but carers in these communities have been recognised as hard to reach.

Removal of discrimination of carers
Clear pathways are needed to ensure that young carers are are identified and supported at an early stage.

Adult carers areas of concern include the lack of recognition of their key caring role when accessing services for themselves (such as health services) which can severely restrict their ability to access rigid systems, such as appointment systems.

Training and support
Work is needed to ensure that when carers are identified they can then easily access appropriate training both to assist them in their caring role but also to allow them to remain in employment, train or retrain for employment.

Carers and employment
Work is needed to help carers remain in or return to employment. Awareness of carers’ issues remains very mixed with employers. Some larger statutory organisations have already initiated family-friendly policies but anecdotally carers are still reporting that they have had to give up working because of the dual demands.

A scheme to support carers into employment lost its funding when the Working Neighbourhoods Fund was withdrawn in 2011 and has only partially been able to continue functioning due to voluntary sector support.

The Carers Strategy identifies the need for:

  • family / carer friendly employment, training and education;
  • better and timely access to information on employment issue;
  • better and timely access to support to stay in work.

 

Last updated: 27/09/12

8. What evidence is there for effective intervention?

National Guidance
Our health, our care our say (Department of Health, 2006)
Sets out the government’s commitment to put people more in control and make services more responsive to the needs of individuals. Innovation is encouraged to allow greater service user choice and there is an emphasis on prevention and earlier intervention and more support to maintain mental health and emotional well-being.

Recognised, valued and supported (Department of Health, 2010a)
Sets out the support needed by carers to maintain / improve their health and well-being and to carry out their caring role in four main areas:

  • Supporting carers to identify themselves as carers at an early stage
  • Enabling carers to fulfil their educational and employment potential
  • Provision of personalised support for carers and those they support
  • Supporting carers to remain mentally and physically well.

Carers and Personalisation: improving outcomes (Department of Health, 2010b)
A guide on emerging evidence, including examples to illustrate how the principles of personalisation have been applied, emphasising the value of finding ways forward that make sense and work best locally.  Includes:

  • Carers as expert care partners & whole family approaches
  • Early intervention and prevention
  • Making self-directed support processes work for carers.


New Approaches to Supporting Carers’ Health & Wellbeing. (Centre for International Research on Care, Labour & Equalities & University of Leeds 2011)

This programme was developed by the Department of Health as part of its commitments made in the National Carers Strategy in 2008. The commitments included new measures to improve carers’ health and well-being. The programme focused on breaks, health checks and better NHS support for carers. Sites looked at new and innovative ways to engage with carers and deliver services.

The programme was delivered over 18 months and supported over 18,500 carers. Analysis of the programme produced evidence-based conclusions and recommendations for improving carer support services:

  • Breaks from the caring role enable some carers to build confidence and some to change their behaviour and activities which can be beneficial to their health and well-being and improvements to ability to communicate. Flexible and personalised breaks are life enhancing for carers and have the potential to prevent “burn-out”/ health deterioration and so sustain their caring role.
  • Health checks for carers have a positive impact. Four months after implementing health checks one-quarter of carers reported how they looked after their health and the amount of exercise they took had improved. Health checks can lead to sustained self-care and healthier behaviour for carers.
  • Creative and innovative approaches which are flexible to support delivery are more effective than standardisation.
  • Success can be achieved by establishing carers’ champions in GP practices linked to other partner agencies. In hospital successful practices included ward-based initiatives which involved nurses, doctors and health care assistants and made services and support available in the hospital setting.
  • Services need to be accessible from a variety of venues to suit carers’ circumstances and at key points in the carers’ journey, especially when caring first arises, at points of stress and on a regular basis when caring is long-term and intensive.
  • More effective support is achieved by local authorities, NHS organisations and voluntary organisations working together and this partnership should be strengthened in all localities.
  • Local carer support partnerships will develop more effective services by involving a diverse range of carers in service development and should offer them suitable training. Partnerships should work with carers to review carers’ needs, identify local priorities for developing carer support and selecting the leading and supporting agencies needed to deliver different types of carer support services.
  • In delivering support to a wide range of carers and reaching carers not already in touch with services, local partnerships should work flexibly and sometimes on an ad hoc basis to engage carers in specific target groups. To establish and sustain support for some groups of carers, flexible networks, where appropriate involving agencies outside the health and social care system which are trusted by carers or which work with people who are carers, may be required.
  • Effective carer support at the local level should always include a varied portfolio of carer support services which can be adapted to meet individual needs. Flexible and personalised services should be available to carers in a timely manner and be capable of responding rapidly to carers’ needs.
  • Portfolios of carer support need to be agreed locally between local authorities, NHS organisations, voluntary sector organisations and other agencies where appropriate. Carers need support with health, stress, information on how to access suitable support, service available, equipment and home adaptations, income maintenance, self-care, healthy lifestyles and maintaining a life outside of caring, access to education, training, work and leisure; emergency planning and how to access occasional or regular breaks for their caring role.


A review of research on interventions to support carers (Parker et al, 2010) found that:
“The strongest evidence of effectiveness of any sort from our meta-review is in relation to education, training and information for carers.” However, they noted that, overall, the evidence base is poor.
 

Last updated: 01/10/12

9. What do people say?

Following the consultation with carers in Hartlepool during 2010 and 2011, nine priorities were identified for action:

  • Information and communication: Carers told us this was their first priority
  • Access to health services
  • Access to financial resources
  • Support with assessments
  • Remove discrimination of carers
  • Flexibility for a life of your own
  • Training and support to care
  • Emotional support
  • Work, education and leisure.

Whilst it is impossible to obtain the views of every carer, the consultation that took place attempted to make sure that views of carers had been expressed and noted.
 

Last updated: 27/09/12

10. What additional needs assessment is required?

The predicted growth in the numbers of people needing assistance from carers and the estimate of carer numbers are currently based on the 2001 census. More recent data from the 2011 Census will become available in 2012/13 enabling a more accurate assessment of carer needs.

Consultation with known carers needs to be maintained and occur on a regular basis. This should build on techniques such as “Working Together for Change” which make carers key partners in any new developments of services .

Representation from “hard to reach” groups should be promoted and should include people whose first or only language is not English, including people from BME communities and deaf people who use British Sign Language.

 

Last updated: 27/09/12

Key Contact

Name: Jeanette Willis
Job title: Head of Strategic Commissioning
E-mail: Jeanette.Willis@hartlepool.gov.uk

Phone: (01429) 523774

References


Local strategies and plans


Hartlepool Borough Council (2012). Who cares for carers? A multi-agency strategy for carers in Hartlepool 2011-2016.



National strategies and plans

Department of Health (2010a) Recognised, valued and supported: next steps for the Carers Strategy.

Department of Health (2008). Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own.

Department of Work and Pensions (2009) Employment support for carers

 

Other references

 

Carers UK (2012). Facts about carers.

Carers UK (2012). The cost of caring: how money worries are pushing carers to breaking point.

Carers UK & University of Leeds (2011). Valuing carers – calculating the value of unpaid care.

Centre for International Research on Care, Labour & Equalities & University of Leeds (2011). New Approaches to Supporting Carers’ Health & Wellbeing: Evidence from the National Carers’ Strategy Demonstrator Sites Programme.

Department of Health (2010b). Carers and Personalisation: improving outcomes.

Department of Health (2010). Our health, our care our say.

Parker, G; Arksey, H; and Harden, M (2010). Meta-review of international evidence on interventions to support carers. Social Policy Research Unity, University of York

Princess Royal Trust for Carers (2010) Broke and Broken: Carers battle poverty and depression.

Princess Royal Trust for Carers (2011).  Always on call, always concerned: A Survey of the Experiences of Older Carers.

Projecting Adult Needs and Service Information (PANSI)

Projecting Older People Population Information (POPPI)