People who are Carers - Adults

This page is part of the Joint Strategic Needs Assessment (JSNA)

Index of information on this page:

• Key Messages
• What We Know
• What People have Told Us
• Policy and Research
• Our plans for the future
• Contact Adult Social Care 

Key messages:

A carer is someone who provides un-paid help to a person who depends upon them because of frailty, mental or physical health problems, illness or drug/alcohol misuse. They may not live in the same house and do not have to be related to the person who they care for.The amount and type of care that carers provide varies considerably.

Most people will have a role as a carer at some point in their lives and it is estimated that as many as one in ten people at any one time is a carer.  People simply may not realise that the help they are offering, especially during periods of crisis, is in the role of carer.  They may see their role as part of other identities such as a parent, partner or friend.

The geographical isolation of many people in Northumberland increases this risk and rural carers are not only less likely to recognise themselves as carers and exercise their rights, but they may also experience greater difficulty in getting the help they need.

Caring is still predominantly a role carried out by women. The 2001 census showed that about 42% of carers are male and 58% of carers are female; fewer male carers may seek support.

A number of different groups of carers require support and there is no single group or stereotypical relationship, e.g.

• People providing support to someone with an enduring mental health problem often fail to recognise their eligibility for support as the care does not always involve practical help.

• Young carers (under 18) are often not recognised by professionals as having a substantial caring role and can be extremely isolated.

• Black and ethnic minority carers tend to be hidden largely due to assumptions made with regard to the closeness of facilities and the role of woman.

Combinations of disadvantage including caring responsibilities often lead to a cycle of worklessness and ill health, e.g. a person who becomes a carer whilst still a child is more likely than average to be economically inactive and still a carer as a young adult.

Many carers juggle work with caring and view their work as a vital part of their lives.  People who give up work to care face an immediate reduction in income and the loss of companionship at work may lead to social exclusion.

Carers’ health is an issue as carers are more likely than others to suffer from health problems.  Caring can be demanding physically, emotionally and mentally.  Helping to keep carers healthy is crucial if they are to continue in this essential role.

What we know:

Nationally

The UK has approximately 6.4 million carers.  By 2037 the carer population in the UK will reach 9 million. The care they provide is worth an estimated £119bn per year. 

The number of carers over the age of 65 is increasing more rapidly (by 15% from 2001- 2011) than the general carer population (9% increase from 2001-2011). (Carers UK and the University of Leeds 2011).

Every year over 2.3 million adults become carers and over 2.3 million adults stop being carers; 3 in 5 people will be carers at some point in their lives. (Carers UK 2001).

About 3.4 million (58%) of carers are women; one in five carers are women aged 54 to 60 – the peak time for caring. Of the estimated 662,000 carers who combine part-time work with caring, 89% are female and

women are more likely to give up work in order to care. (Equality and Human Rights Commission 2010).

A demographic group sometimes referred to as the 'sandwich generation' typically care for older or disabled parents as well as their own young children. The peak age for such dual-caring is 40-44 for women, and 45-49 for men. Women are more likely to be dual-carers than men. (Agree et al 2003).

The 2001 Census showed that there were half a million Black, Asian and Minority Ethnic carers in England.

Caring varies between ethnic groups e.g. Bangledeshi and Pakistani men and women are three times more likely to provide care compared with their white British counterparts. Black, Asian and Minority Ethnic carers are more likely to be providing  20-49 hours of care a week, are less likely to be in employment, find it more difficult to access support, are less likely to be consulted about hospital discharge or receive additional support from their GP around caring, are more likely to miss out on financial and practical support.  (Carers UK 2011)

 Across all carers:

• 82% provide practical help e.g. preparing meals, doing housework or shopping.
• 38% provide personal care e.g. help with bathing, feeding and going to the toilet.
• 38% provide physical help e.g. getting in and out of bed or up and down stairs.
• 35% administer medication.
• 49% help with financial matters and other correspondence.
• Carers providing 20 hours or more care a week are more likely to provide all manner of care tasks.

According to an NHS Information Centre survey:

• most carers (40%) care for their parents or parents-in-law
• 26% care for their spouse or partner
• 8% care for disabled children 
• 5% look after adult children
• 4% care for their grandparents and 7% care for another relative
• Whilst the majority care for relatives, one in ten carers (9%) care for a friend or neighbour

• 58% of carers look after someone with a physical disability
• 13% care for someone with a mental health problem
• 20% care for someone with a sensory impairment
• 10% care for someone with dementia.

• 83% care for just one person 
• 14% care for two people
• 3% are caring or at least three people
• 80% of the people who cared for more than one person were between the ages of 40-64, and at least half were caring for a parent or parent-in-law, or a son or daughter. (Carers UK 2011 survey)

Further information  can be found in this Policy Briefing from Carers UK: Facts about Carers 2012.

Carers UK has produced extensive research on issues affecting carers. Research reports can be accessed  via http://www.carersuk.org/professionals/resources

Northumberland

Analysis from the latest (2011) census shows that the number of people in Northumberland providing unpaid care has increased in the last ten years from 33,609 to 35,697. The percentage of the population who are unpaid carers has slightly increased from 10.9% to 11.3%. The percentage of the population who are providing over 20 hours unpaid care has increased slightly from 3.6% to 4.2%

The recorded number of people providing unpaid care under 20 hours per week has fallen over the last ten years (a decrease of 356 carers). The recorded number of people providing over 20 hours care continues to rise (an increase of almost 2.5 thousand in the last ten years).  Over 20 hours is the point at which caring starts to significantly impact on the health and wellbeing of the carer, and their ability to hold down paid employment alongside their caring responsibilities.

• Over 13,000 people provide over 20 hrs of care.  This is an increase of 22% in ten years.
• Nearly 9,000 people provide over 50 hrs of care. This is an increase of 17% in ten years.

Young Carers:

The 2001 Census found 175,000 young carers in the UK. Some 13,000 are providing more than 50 hours of help a week. Recent estimates are nearer to 700,000 young carers. The vast majority (85%) of all children providing care are caring for one to 19 hours per week. This is a wide range which means caring will affect these young people in different ways.

The 2001 Census identified 806 young carers in Northumberland aged 5-18 who provided care, some up to 50 hours or more per week. 

The National Society for the Prevention of Cruelty to Children, concludes that 4% of children will be young carers at some point in their childhood.  57% of known young carers are girls and 43% are boys.

This amounts to at least 2,000 children and young people of school age in Northumberland, but this is still considered a conservative estimate. This figure is more than doubled taking into account the transition into adulthood and young adults up to 25 who take on the caring role instead of higher education/work.

More detailed figures showing the profile of carers in Northumberland by location and age will be available soon.

What people have told us:

People receiving social care services and carers in Northumberland were surveyed as part of the Adult Social Care User Survey in England 2010-11.  Overall views were very positive: overall satisfaction with the care and support people were receiving was 93% - either extremely (31%) satisfied, very satisfied (32%) or quite (30%) satisfied.

2009/10 Joint Health and Social Care Survey showed that carers’ priorities have remained broadly the same over time:

• better information
• breaks from caring
• opportunities for employment.

Other issues important to carers relate to:

• The lack of support from the out of ours emergency duty team on weekends (i.e. nobody answering the service on certain occasions)
• How personal budgets are presented and offered to service users and their carers
• The lack of a named care manager for many service users and their carers

Policy and research:

The Adult Social Care Outcomes Framework 2013/4 (DH, 2012)

The needs of carers are included in all domains of the Outcomes Framework, with specific reference to:

• Carers being able to balance their caring roles and maintain their desired quality of life.
• Earlier diagnosis, intervention and reablement so that people and their carers are less dependent on intensive services
• Carer satisfaction with their experience of care and support services
• Carers feeling that they are respected as equal partners throughout the care process

No Health Without Mental Health: a cross government mental health outcomes strategy for people of all ages (HM Government  2011) sets out six shared objectives to improve the mental health and well-being of the nation, including carers

Equality Act 2010 consolidates existing anti-discrimination legislation, and for the first time extends protection against discrimination to carers. It means that it is now against the law to discriminate against, harass or victimise someone who is associated with a disabled person, in effect giving carers new rights in the workplace and in the provision of goods and services.

Click here to find out what we are doing to promote equality in Northumberland and how we are meeting our new duties under the Equality Act 2010.

Recognised, valued and supported (DoH, 2010) identifies how the coalition government will take the carers strategy forward, outlining actions over the next four years to ensure the best possible outcomes for carers and those they support ,with an emphasis on:

·        identification and recognition

·        realising and releasing potential

·        a life outside caring

·        supporting carers to stay healthy.

NHS Constitution 2009 builds on the NHS commitments to carers in the National Carers’ strategy

Carers at the heart of 21st century families and communities 2008 outlined the previous Government's vision for carers in the next 10 years.

Our Health, Our Care, Our Say: A New Direction for Community Services, White Paper 2006 announced a ‘New Deal’ for carers including setting up a national helpline, training for carers, funding for emergency planning and the revision of the National Carers’ strategy.

The Work and Families Act 2006 extended the right to request flexible working to employees who care for adults.

The Carers (Equal Opportunities) Act 2004 gives local authorities the duty to inform carers of their right to an assessment; give consideration to the wishes of a carer to work, to undertake education or training, or to engage in leisure activities; and the power to ask assistance from other authorities in planning the provision of services to carers.

The Employment Act 2002 gives working parents of disabled children under 18 the right to request flexible working.

The Carers and Disabled Children Act 2000

ives carers over the age of 16, the right to an assessment, irrespective of whether the person they support has been assessed or is receiving services. It also gives local authorities the power to provide services direct to the carer to meet their assessed needs and enables carers to apply for direct payments to meet their own needs.

Putting people first: a shared vision and commitment to the transformation of adult social care (DH, 1999)

This strategy document, published in 1999, acknowledged the value of carers in the community by offering information, support and care.

The Carers (Recognition and Services) Act 1995 introduced the right of a separate assessment, if a person was being assessed under the 1990 Community Care Act, creating the building block for the following Carers’ Acts.

The NHS and Community Care Act 1990 requires that local authorities involve families and carers when making plans to assist adults who are vulnerable.

Other Health and Social Care policy and legislation

Draft Care and Support Bill (HMG, 2012)

Health and Social Care Act 2012

Caring for our future: reforming care and support (HMG, 2012)

A vision for Adult Social Care: Capable communities and Active Citizens (DoH, 2010)

Commissioning for personalisation: a framework for local authority commissioners (DoH, 2010)

Equity and excellence: Liberating the NHS (HMG , 2010)

Think Local, Act Personal (DH and others, 2010)

Guidance on working with carers 

guidance for doctors and medical students working with carers 

an action guide for general practitioners 

Carers and confidentiality in mental health

Triangle of Care – Carers Included: a guide to best practice in acute mental health care

Commissioning for carers

guidance on social care services for carers 

Examples of good practice

Out of Hospital project  looked at how supporting carers during hospital discharge can save the NHS time and money by avoiding unnecessary readmissions and addressing carers’ health needs. 

The Social Care Institute for Excellence Good Practice Framework has a database of good social care practice examples.

Our plans for the future:

The Carers Strategy 2008-2013 (Northumberland Care Trust, 2009) sets out a multi-agency approach to carer support and planning includes a detailed Action Plan under six priorities:

• Information and recognition
• Time Off
• Health and well-being
• Financial security
• Quality Services
• A voice

NHS North of Tyne Integrated Strategic & Operational Plan 2012-13 to 2014-15 (ISOP) combines the commissioning plans of the four Clinical Commissioning Groups in North of Tyne (including Northumberland), who will be taking over the commissioning responsibility from NHS North of Tyne by April 2013.  Within the overall objectives of prevention and wellbeing, the support needs of carers are highlighted.

Flourishing People, Connected Communities: promoting emotional resilience, mental health and wellbeing: the Northumberland Mental Health Promotion and Suicide Prevention Strategy (Northumberland Strategic Partnership, 2010-15); this includes the needs of carers.

A preventative approach to Adult Social Care in Northumberland (Northumberland NHS Care Trust and Northumberland County Council, 2009)

Describes how good information and advice, practical support, appropriate housing options, reablement and joint working between health and social care will assist people and their carers in living fulfilled and independent lives and reduce the number of people requiring ongoing support from social care.

All the Joint Social Care and Health Commissioning Plans 2012-2015 (Northumberland Care Trust, Northumberland County Council and Northumberland Commissioning Group, 2012) include the following priority actions for carers:
 

• Recognising the role of family/friend carers
• Involving  carers in planning and delivering of health, social care and housing services
• Implementing the Carers Strategy and Action Plan covering access to carers breaks; access to information; support for return to work’ access to carers advice and skills training; and identification and support for young carers.