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 importance of the role of carers has been reinforced with the Care Act 2014 and the Childrens and Families Act 2014. The Care Act places a duty on local authorities to identify carers with unmet needs and offer carers an assessment that considers the outcomes that the carer wants to achieve in their daily life, activities beyond their caring responsibilities.  It reinforces the key outcomes identified in the Carers Strategy Second National Action Plan 2014-16 including:

  • Identification of carers
  • Realising and releasing potential
  • A life alongside caring
  • Supporting carers to stay healthy



The economic value of unpaid care is estimated to be £132 billion nationally (Carers UK & University of Leeds, 2015).  For Stockton-on-Tees this would be around £464 million.

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Last updated: 2017-01-11 16:02:37
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1. What are the key issues?

  • There are 4,000 carers in Stockton-on-Tees who are known to the Council and carer support services but more than four times as many (up to 17,000) who are not.
  • The number of carers is set to increase as the population ages and with the expected increase in the number of people affected by dementia.
  • Carers generally neglect their own health and generally suffer from poorer physical and mental health than the general population.
  • Many carers don’t have easy access to respite services.
  • There is concern that carer support services may come under considerable pressure due to the present economic climate and budget deficit measures.  More innovative ways of providing support to carers need to be developed to improve cost-effectiveness.

  

Last updated: 11/01/17

2. What commissioning priorities are recommend?

2016/01
Review carers strategy
in line with the Care Act 2014 and National policies in consultation with carers.

2016/02
Review commissioned carers services
in consultation with carers and in line with the Care Act 2014.
 

2012/01
Develop systems to identify carers and make them aware of available support.  Health and social care services should routinely identify carers and provide information about or refer to carer support services.  Achieved

Systems are in place to ensure when a care assessment is carried out for people requiring social care, it is asked if they have anyone they consider their carer, this is recorded and a carers assessment offered. A register of carers using Stockton Borough council Carers services and information is available for carers infoming them of their right to a carers assessment.

2012/02
Ensure existing services for carers have sufficient capacity to manage anticipated increased need. Achieved.

A contract is in place for the ‘Provision of Adult Carer Support Services’ 2014/17 to provide information and support as needed.

2012/03
Promote carers’ issues and available carer support more widely, ensuring access to health services. Achieved - this is included in the Carer Support Services contract.

2012/04
Commission additional respite services which provide not only traditional respite but also innovative ways to provide regular respite. Achieved

Respite is accessible through the assessment process and through the Carer support Services, these may be through a direct payment or a single grant payment, in addition a sitting services is available.

2012/05
Increase provision of timely information and support for carers who care for terminally ill people to ensure they are central to the team which cares for the person coming to the end of their life but ensures support for the physical, psychological, social, financial and spiritual well-being of the carer.  Remains a priority.

2012/06
Implement the recommendations of the efficiency, improvement and transformation review.  Remains a priority.

Last updated: 11/01/17

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 2011 Census showed the majority of carers are of working age; the peak age for caring is 50-64 with over 2 million carers in this age group.  About one in five people aged 50-64 are carers.

Young carersThere are 166,000 young carers in the UK (2011 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.  The 2011 Census showed that 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 carersThere is limited 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 carersThis 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).

There are 1.2 million people in Enhland aged 65 and over who are providing unpaid care to a disabled, seriously ill or older relative or friend.  The number of carers aged 85 and over grew by 128% in ten years (Carers UK & Age UK, 2015).

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

Significantly more women than men in the 50-64 age group provide care.  However, in the 65 and older age group, more men provide care than women.  Nearly 3 in 5 carers aged 85 and above (59%) are male (Carers UK & Age UK, 2015).

Female carers are more likely to provide 'round the clock' care, with females making up 60% of those caring for over 50 hours per week (Census 2011).

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.

The 2011 Census showed for the general population that 5.2% classed their health as "not good".  For those providing over 50 hours of care per week, the rate rises to 16%.

 

Last updated: 11/01/17

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

It is estimated that there are around 21,100 carers in Stockton (calculated by applying the 2011 Census local carer prevalence rates to the 2015 population projection) but only around 4,000 are known to the Council and carer support services.

The 2011 Census identified 5.4 million people in England were providing unpaid care, a similar proportion to that seen in 2001.  Over one-third of unpaid carers were providing care for 20 or more hours per week in 2011, a 5% increase from 2001.

Stockton-on-Tees Council’s 2010/11 referrals, assessments and packages of care (RAP) figures show 1,456 carers have received a carers assessment. Around two-thirds of these were for working age carers and nearly 5% were carers aged under 18.

Sanctuary Carers has 666 clients registered with their service (June 2016).  It is difficult to establish the level of need for carer support as there are many more carers in Stockton-on-Tees than are known about.  Although not all carers will want or need support, the number of carers in need of but not accessing support remains unknown.

With an estimated 21,100 carers in Stockton-on-Tees it is apparent that there is a large number of carers not accessing services and who are at risk of poor health and well-being (although it must be acknowledged that many carers do not want support).

The Projecting Older People Population Information System (POPPI) estimates the number of carers aged over 65 according to the number of hours of care they provide.  In total there are likely to be over 4,600 carers in Stockton-on-Tees aged over 65.

People aged 65 and over providing unpaid care, Stockton-on-Tees, 2015

Age of carer

Hours of care provided per week

1-19

20-49

50+

65 - 74

1,404

401

1,111

75 - 84

460

190

763

85+

73

32

206

(Source: POPPI ) 

 

Since 2011, for people aged 65+ providing unpaid care, there has been:

  • a 29% increase for those providing 1-19 hours of care per week;
  • a 5% increase for those providing 20-49 hours of care per week; and
  • a 44% increase for those providing 50+ hours of care per week.

The 2011 census showed 16,500 of the 21,100 Stockton-on-Tees residents who reported they provided care were aged below 65.

With an estimated 21,100 carers in Stockton-on-Tees and only around 4,000 known to council and carer support services, it is likely that many more carers would benefit from support.

 

Last updated: 11/01/17

5. What services are currently provided?

Stockton Carers Centre

In April 2014, Sanctuary Supported Living became Stockton Council's adult carer support.  This is currently located in Stockton Business Centre based in Brunswick Street.

Carers are invited to register there but there is no requirement to register to access support. There are 666 carers registered with the services as of June 2016. It provides an information hub for carers, advice and support, counselling and personal development for carers.  These carers will include both those known to Social Services and others who are not. The Centre provides a wide range of support services and is available to all carers.

Carers’ assessments
Care Managers can arrange for carers to have their needs assessed, separately from the needs of the person they are caring for.  If carers are not in direct contact with a Care Manager they can still request an assessment by contacting the Council’s Social Care Team.

Support for carers of people affected by dementia
Dementia Support Workers provide advice, information and emotional support for carers of people affected by dementia. The service helps carers understand dementia, how to deliver more effective care and how to develop coping strategies to reduce stress. It also provides information about entitlements and other additional services that may be beneficial in supporting the carer or the cared for person.

A Support Worker is working with carers of people affected by dementia from the BME community and “hard to reach” groups to help and support them to overcome any barriers to accessing advice, information and support.

Advice and Information Programme
A programme of information sessions held in the Carers Centre covering a wide variety of topics which will help carers in their caring role. Each session is delivered by a guest speaker who has specialist knowledge on the subject. The topics for sessions are decided by consultation with carers.

Stockton Information Directory

In addition information is held on the Stockton Council website on how to access services and carers assessments along with information on services on the Stockton Information Directory.

Support Worker in GP Surgeries
Two-thirds of GP surgeries in Stockton-on-Tees currently have carer information boards. The Support Worker works with GP surgeries to help staff understand carers’ issues and identify patients who are carers to offer advice, information or referral to a support service.

Palliative Care Support Worker
Provides support to carers of terminally ill people from the point of diagnosis onwards, providing advice and information on a wide range of issues that affect carers of terminally ill people. The Support Worker is also involved in the training of staff in hospitals and the community about issues relating to carers of terminally ill people and works with the multi-disciplinary teams to contribute to solutions and help identify areas of concern. The service can be accessed through the Carers Centres.

Support for carers from the BME community and “hard to reach” groups
A Support Worker helping carers from the BME community and “hard to reach” groups is based in the Carers Centre to help and support them to overcome any barriers to accessing advice, information and support.

Breaks for carers
These include:

  • Planned breaks, booked in advance by the carer
  • Emergency breaks, available at short notice, for example if the carer is taken into hospital or is unable to carry on for another reason.


Carer break services are delivered by a number of providers and in a number of settings including:

  • In the clients’ own home
  • In residential care settings (including care homes for the elderly mentally ill, and those with learning disabilities).

Sitting service
Enables carers to take a break from home, but unlike the respite care services described above provides short-term (up to 8 hours per month) social support and basic personal care, rather than longer breaks.

Direct payments
Current national policy supports the provision of payments made directly to carers so that, with appropriate advice and support, they can plan and purchase the services they need themselves.

Stockton Council continues to help more carers access direct payments and take control of their own care package.

Young carers support
The main support for young carers in Stockton-on-Tees is from Eastern Ravens Trust, which provides social support and advice, plus some respite and holiday breaks for young carers.  In 2015/16, 145 young carers were given support.

Carers of people affected by drugs or alcohol
Support for carers of people affected by drugs or alcohol. Also provides respite and a gardening service.

Counselling for carers of people with chronic / long-term conditions or physical disabilities
Helps carers develop coping strategies and signposts to other appropriate support services.

Elderly frail and older carers respite breaks
Short breaks for a self-support group for elderly frail people and older carers.

Hindu carers respite breaks
Short respite breaks for Hindu carers.

 

Last updated: 11/01/17

6. What is the projected level of need?

Estimates do not show substantial change in the number of people who might require care.  However, it cannot be assumed there will be relatively little increase in demand for carer support services.

Forecast number of working age people who might require carer support, Stockton, 2015 to 2025

 

2015

2020

2025

Total population

195,700

201,500

206,800

People aged 18-64 with moderate to severe learning disability

659

658

658

People aged 18-64 with mental health problems

20,610

20,673

20,536

People aged 18-64 with moderate to severe physical disabilities

12,233

12,420

12,371

(Source: PANSI – www.pansi.org.uk)

 

The relocation of the Stockton Carers Centre to a more central location has shown an increase in the number of carers registering for support from a previous average of 6 or 7 per week to 25 to 30 per week due to the higher visibility of the centre. This indicates that if carer support services are more widely promoted there will be a substantial increase in uptake. 

There is a projected increase of 25% in the older population (65 and over) during the next ten years.  In particular it is expected that the number of people aged over 90 will increase by nearly 80% by 2025.  This will impact on the need for support as the number of carers increases.  See the Forecasting page for details.

 

Last updated: 11/01/17

7. What needs might be unmet?

Although there are services in place to support carers’ needs identified through consultation, carers felt more needs to be done to provide wider access to services.

There is a need to identify more carers as the carers presently accessing services are only a small proportion of the estimated number.

 

Last updated: 11/01/17

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.

Valuing Carers- the rising value of carer’s support: (2015); Carers UK, University of Sheffield, University of Leeds

 

Last updated: 11/01/17

9. What do people say?

Recent local consultations with carers identified that the most important needs of carers are:

  • respite,
  • support to maximise finances (entitlements & employment),
  • reduction in stress,
  • improve mental and physical well-being,
  • have good quality information,
  • be involved and respected by health and social care professionals in the care of the cared for person.

The Carers Centre reports that there is an increasing need for advocacy for carers.

Consultation with carers locally has shown one of the most valued and beneficial services is respite and this should be more widely available in flexible formats.

There is concern that there should be more information for carers generally available in more accessible locations.

Health and social care professionals need to have better understanding of carer issues and of carer support services.

Stress relief is a major concern.  Having someone to talk to is invaluable, as is the availability of alternative therapies and support in developing coping strategies.

Carers wanted the currently available support to remain available but many felt a central point of contact should be available instead of relying on GPs and other professionals who have varying degrees of knowledge about carers’ issues and support services.

Last updated: 11/01/17

10. What additional needs assessment is required?

Wider consultation to reach more carers throughout Stockton-on-Tees.

Further consultation with carers from the BME community to assess their needs.
 

Last updated: 11/01/17

Key Contact

Name: Liz Boal

Job Title: Strategic Commissioning Manager

e-mail: elizabeth.boal@stockton.gov.uk

phone: 01642 524553

 

References


Local strategies and plans

 

Stockton-on-Tees Borough Council (2009). Strategy for Carers’ Services 2009-2013.

Stockton-on-Tees Borough Council (2009). Young carer’s strategy 2009-2012.

 


National strategies and plans

 

 

Department of Health (2014) Care Act

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 & Age UK (2015). Caring into later life.

Carers UK & University of Leeds (2015). Valuing carers – the rising value of carers' support.

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)