The Care Act 2014 defines a ‘carer’ as an adult who provides or intends to provide care for another adult needing care. It states that the role of the a ‘carer’ should not be confused with ”care worker” or “care staff” who are either undertaking a caring role as part of paid employment or as a volunteer attached to a voluntary organisation.

Carers help and support the people they care for with a range of problems including illness, disability, dementia, and substance or alcohol abuse. They keep those they care for safe by giving physical, practical and emotional support. Their responsibilities may be for short periods or, in many cases, for a lifetime. Responsibilities may also vary over time and be difficult to predict on a daily basis. Carers can also carry out their responsibilities from a distance. Anyone can become a carer and it might happen suddenly or gradually over time with a slow deterioration in the health of the cared for person.

Carers will be from any ethnic, faith, social background or sexual orientation. They can care for more than one person, maybe working or unemployed and may have their own disabilities or illnesses.

A parent carer of a disabled child will be providing substantial and regular care beyond what is usually expected for a child of a similar age. When a disabled young person reaches age 18, the parent carer does not stop being a parent, but in legal and policy terms is considered to be the carer of an adult.

Both adult and young carers are now recognised in law as having the same rights as the people they care for through the Care Act 2014 and the Children and Families Act 2014. These changes include the duty for local authorities to identity, assess and support carers in their own right. They are also required, where appropriate, to adopt a ‘whole family approach’ including involving the carer in decisions about the support and treatment of the person they care for.
Slough Borough Council (SBC) and Slough Clinical Commissioning Group (CCG) are currently updating the interim Joint Carers strategy 2014-15 following legislative changes introduced in April 2015. Supporting carers is also a high priority within the recently launched Slough Borough Council Five Year Plan 2015 and Slough CCG Year Strategic Plan 2014 .

What do we know?

Carers make a vital contribution to communities providing emotional and practical support to others. This includes enabling people they care for to remain in their own homes for much longer. They also make a significant economic contribution to communities. The report Valuing Carers in 2011 estimated that at that time, the contributions they made amounted to £119 billion per year in the UK. Carers help reduce the ever increasing pressures on both health and social care budget by limiting numbers of hospital and residential admissions. Therefore there are economic benefits to support carers as well as legal and moral duties. A report by the Royal College of General Practitioners (RCGP) estimates in a population of 200,000 people, the average number of Carers is 20,000. The diagram below, taken from this report illustrates the average age of carers, the hours of care provided as well estimated annual savings they deliver.

Figure 1. A CCG Caring Community

Facts, Figures, Trends

The 2011 national census for England, Wales and Northern Ireland concludes a significant increase in the number of carers since the last census. The numbers rose from 5.22 million in 2001 to 6 million, an increase of 629,000, in the ten year period. Of these, 2.2 million people are undertaking caring responsibilities in excess of 20 hours a week and .4 million in excess of 50 hours per week. It is anticipated that the numbers of carers are likely to increase in the future as people are living longer and with more complex needs.

Nationally 58% of carers are female where 42% are male. The age profile shows the peak age for caring is 50 to 59 and that one in five people in this age group (1.5 million across the UK) are providing some unpaid care. Of this, one in four are women compared with 18% men.

The group of carers often referred to as the ‘sandwich generation’ are most likely to be middle-aged people. Often they have dependent children in addition to their caring responsibilities for older or disabled adults. 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.

Caring varies between ethnic groups. Bangladeshi and Pakistani men and women are three times more likely to provide are compared with their white British counterparts (Facts about carers 2014).

Black and Minority Ethnic (BME) carers who care for at least 20 hours a week are less likely to be in employment than those without caring responsibilities. BME respondents to Carers UK’s ‘State of Caring’ survey highlighted the challenges often faced by BME communities in accessing support. The study concludes that this group of carers are less likely to be consulted about hospital discharge or receive additional support from their GP around caring. They are also more likely to miss out on financial support. In addition they are more likely to be caring without any practical support from services, friends or family.

A 2011 report focusing on BME Carers (Half a million voices: improving support for BAME carers) highlight additional difficulties they face including language barriers, accessing culturally appropriate services and stereotyping around caring. As a consequence they are at greater risk of ill health, poverty, loss of employment and social exclusion.

Figure 1 summarises the number of carers identified in Census 2011.

Figure 1: Carers in Slough

Age Group Provides unpaid care: Total Provides 1 to 19 hours unpaid care a week Provides 20 to 49 hours unpaid care a week Provides 50 or more hours unpaid care a week
0 to 24 1,350 1,013 208 129
25 to 49 5,662 3,438 1,047 1,177
50 to 64 3,097 1,907 503 687
65 and over 1,513 696 219 598
Total 11,622 7,054 1,977 2,591

Source: Office for National Statistics.

This latest census date indicates that 14 % of the population of Slough are carers . This compares with the national figure of 12%. The peak age for carers in Slough is 35-49 years, closely followed by 50-64 years.

Carer’s Allowance is the main benefit provided to people who are providing care who are aged 16 or over and providing unpaid care to someone for at least 35 hours per week.

The table below details the number of carers in receipt of carers allowance by age category in Slough compared with other Local Authorities in England and Wales and the South East.(Nomis Official market labour statistics)

Figure 2. Numbers receiving carers’ allowance according to age 2012

Figure 2: Number of people receiving carers allowance. Source: Office for National Statistics.

According to Department of Work and Pensions latest published data (November 2013) 1,700 people in Slough were at that time entitled to Carers Allowance.

SBC Adult Social Care undertook 380 carers assessments between April 2014 and March 2015. In addition 141 reviews also took place. The introduction of the Care Act has bought a marked increase in the numbers of carers assessments being completed. Between April and June 2015, 189 carers assessments were completed which compares to 103 for the same period in 2014.

For the first five months following the implementation of the Care Act, 64 carers were assessed as eligible for a direct payment.

National & Local Strategies (Current best practices)

‘Recognised, Valued and Supported: Next Steps for the Carers Strategy’ 2010 sets out the four key priorities upon which the Government, working in partnership with Local Authorities, the NHS, employers, the voluntary sector, local communities and Carers will focus.

Priority area 1: Identification and recognition
Supporting those with caring responsibilities to identify themselves as Carers at an early stage, recognising the value of their contribution and involving them in designing local care provision and planning care packages.
Priority area 2: Realising and releasing potential
Enabling those with caring responsibilities to fulfil their educational and employment potential.
Priority area 3: A life outside of caring
Personalised support both for Carers and those they support, enabling them to have a family and community life.
Priority area 4: Supporting Carers to stay healthy
Supporting Carers to remain mentally and physically well.
These four national priorities were again endorsed in the recent National Plan for Carers.
SBC and CCG will be adopting these four priorities within the new local strategy.

What is this telling us?

In co-producing with carers the Carers Strategy, the following themes were identified as the mot important to help them in their caring role include:

  • People appreciate what I do as a carer
  • The support I receive meets my cultural and language needs
  • I am consulted / involved in the support of the person I care for
  • I can have a carers assessment if I choose to
  • I have a positive relationship with the person I care for
  • I get advice and training to support the person I care for
  • I am able to recognise my own needs
  • I know where to go for employment opportunities, education and training
  • The care I give is appropriate to my age and abilities
  • I will receive information about Direct Payments
  • My employer understands my caring responsibilities
  • I know other carers to share experiences, get support and learn from each other
  • I have a life outside of caring
  • My emotional and physical health needs are met
  • I can have a break when I need it
  • My GP knows I am a carer

What are the key inequalities?

National and local information indicates carers will often ignore their own financial, health and emotional needs, putting the needs of those they care for before themselves. As a consequence caring can impact on many aspects of their lives including:

  • Accessing and staying in employment.
  • Financial, health and emotional wellbeing.
  • Accessing social and recreational activities.
  • Family and other relationships.
  • Achieving educational potential
  • Juggling work and caring responsibilities

The RCGP report referred to above summarises the health impacts on carers. These include:

  • 40% of carers experiencing psychological distress or depression. Those caring for people with behavioural problems experience the highest levels of distress.
  • 33% of carers providing more than 50 hours of care a week report depression and disturbed sleep.
  • Carers providing more than 20 hours of care a week over an extended period have double the risk of psychological distress over a two year period compared to non-carers.
  • 44% of carers suffer verbal or emotional abuse and 28% endure physical aggression or violence from the person they care for.
  • Older carers who report ‘strain’ have a 63% higher likelihood of death in a four year period.

In a guidance report produced by ADASS focusing on Carers and safeguarding, it lists situations when the carer, often when isolated, is at increased risk of harm. These include when the person they support:

  • Has health needs that exceed the carer’s ability to meet them
  • Treats the person with lack of respect
  • Rejects help and support from outside
  • Has a history of substance misuse, unusual or offensive behaviours
  • Refuses or is unable to be left alone at night.

The last local Carers survey 2012-13 conducted as part of a national exercise included questions focusing on the impact of caring. The sample of 165 Slough Carers resulted in a 34% response rate (56 Carers). Of theses respondents:

  • 25% indicated that they were unable to continue with paid employment because of the caring responsibilities.
  • 23% felt they sometimes could not look after themselves well enough.
  • 18% felt they had insufficient time so were neglecting themselves.
  • 42% indicated they themselves had health conditions including long-term illnesses.

What are the unmet needs/ service gaps?

The current unmet needs/ service gaps for carers include the need to:

  • Tackle health inequalities for carers
  • Promote social inclusion
  • Improve employment, training and educational opportunities
  • Improve access to mainstream and preventative services
  • Improve availability of advice and information to all carers including benefits advice
  • Ensure carers are aware they are entitled to a Carers Assessment
  • Increase training to support carers in their caring role.
  • Direct Payments to carers meet eligibility, enable more personalised support
  • Develop the range and quality of preventative community based support for both them and the person they care for.

Recommendations for consideration by other key organisations:

The joint Carers Strategy, currently in development, will require a partnership approach within statutory and voluntary sector to ensure successful implementation of it. The Carers Partnership Board will have a critical role in overseeing implementation.

SBC and Slough CCG will work together by committing deliver the strategy. This will include using the carers’ element of the Better Care Fund to provide targeted and preventive support to carers. This will include:

  • Working with the voluntary sector to identify carers from Slough’s diverse communities
  • Ensure carers have the choice of a carers assessment , and where both they and both the person they care for agree, a combined assessment
  • Have access to timely information, support and where appropriate advocacy
  • Being able to register with their GPs a carer to enable them to have their own health needs met and be signposted for support
  • Enabling carers who are eligible for a Direct Payment to purchase personalised support.
  • Engaging with local employers to raise awareness about their needs as a working caring