Carers

Carers

Note on terminology: Anyone who ‘who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support’ can be classified as a carer (NHS England, 2022). Not everybody who falls into this group will consider themselves to be carers. There is a lot of work locally and nationally about the importance of recognising young carers, who are often involved in doing things at home to support family members. However, it is important to note that this term can be a problematic in some cases, such if referring to a 5-year-old whose parent who has mental or physical health conditions (3).

The support provided by unpaid carers, most commonly to family members or partners, is often physically and emotionally demanding. As such, this group is at a higher risk of experiencing poor mental health (Public Health England, 2021a). Chapter five of this mental health needs assessment covers some of the organisations that support carers in Cambridgeshire and Peterborough.

  • A third of adult carers (Carers UK, 2021) and 38% of young carers report having a mental health problem (Sempik & Becker, 2013).
  • Adult carers report higher levels of stress and depression, and lower wellbeing, than non-carers (Pinquart & Sörensen, 2003).
  • Young carers have poorer mental health than their peers, including more symptoms of anxiety and depression. They are also more likely to have a long-term mental health condition (Lacey et al., 2022).
  • A national survey found that the top worries of carers are managing the stress and responsibility of caring, and the negative impact that caring responsibilities have on their physical and mental health (Carers Week, 2022). 87% of carers state that their role as a carer has a negative impact on their mental health (Carers UK, 2012).
  • Carers providing 35+ hours of care a week are at a higher risk of mental health problems (Carers UK, 2021).
  • The proportion of adults carers who report having a mental health problem is higher in Cambridgeshire (17.9%) than the national rate (13.2%); and lower than the national average in Peterborough (9.2%).

Figure 78: Percentage of adult social carers who have a mental health problem or illness, 2021-22. Data source: Survey of Adult Carers (SACE), 2021-22 – Interactive Report. Note that this data only covers carers aged 18 or over, who care for another adult.

A report into the experiences of people caring for family members with mental health conditions, carried out in Cambridgeshire and Peterborough from 2019 to 2021, found that many carers were being treated for depression and reported significant stresses relating to their caring responsibilities (Wells & Sidney, 2021). Many carers reported feeling isolated from their communities, predominantly due to stigma and ignorance around mental health and their caring responsibilities.

Local population

At least 68,000 people across Cambridgeshire and Peterborough provide some level of unpaid care. Peterborough is the district with the highest number of people providing unpaid care. True levels may be higher as many people who provide unpaid care do not define themselves as unpaid carers, so may not to identify themselves as such.

Table 29: Number of people providing unpaid care across Cambridgeshire and Peterborough in 2021. Data source: (Office for National Statistics, 2023b)

The number of carers in Cambridgeshire is projected to rise substantially by 2040. The greatest increase is predicted to be in the number of people aged between 65 and 74. providing 1 to 19 hours of unpaid care a week.

Figure 76: People aged 65+ providing unpaid care to a partner, family member or other person in Cambridgeshire, projected to 2040. Data source: Projecting Older People Population Information System

The number of carers in Peterborough is projected to rise substantially by 2040. The greatest increase is predicted to be in the number of people aged between 65 and 74, providing between 1 to 19 hours of unpaid care.

Figure 77: People aged 65+ providing unpaid care to a partner, family member or other person in Peterborough, projected to 2040. Data source: Projecting Older People Population Information System

  • In May 2022, 20% of adults (over 18s) in England were providing unpaid care (Carers Week, 2022):
    • The peak age group for providing care is 55- to 64-year-olds.
    • Women in the UK are more likely to provide care than men.
    • Part-time workers are the most likely to be providing care, compared to those working full-time, not working or people who are retired.
  • National data shows that young carers are 1.5 times more likely than their non-carer peers to be from Black, Asian or minority ethnic groups, and are half as likely to speak English as their first language (Hounsell, 2013).

Risk factors for poor mental health

Socioeconomic determinants of health place carers at risk of poor mental health:

  • Being a young carer can prevent people from achieving their educational potential, which may have long-term consequences on their employment opportunities (Hounsell, 2013).
  • Being a carer can prevent people from working: 37% of working-age carers report stopping work because of their caring responsibilities (Carers UK, 2012).
  • Many carers experience financial insecurity (Carers UK, 2012):
    • A national survey found that 16% of carers worry about ‘not being able to cope financially’ (Carers Week, 2022).
    • The average income of families with a young carer is £5000 less than that of families without a young carer (Hounsell, 2013).
    • Carers with annual household incomes of under £20,000 are more likely to be worried about the impact of caring on their mental and physical health (Carers Week, 2022).
  • National research shows that a third of carers that they ‘always’ or ‘often’ feel lonely (Carers UK, 2021).
  • Only 1 in 4 carers in Cambridgeshire, and 1 in 5 in Peterborough, report having as much social contact as they would like in 2021-22. This is lower than the national average and a decline from previous years.

Figure 79: Proportion of carers aged 18-64 reporting having as much social contact as they would like, across Cambridgeshire and Peterborough and England. Data source: NHS Digital Adult Social Care Survey

  • Research in Cambridgeshire and Peterborough involving people caring for family members with mental health conditions found that many people felt isolated from their communities, predominantly due to stigma and ignorance around mental health and their caring responsibilities (Wells & Sidney, 2021).
  • Limited support for carers is likely to heighten pressures on their mental health:
    • Only half of young carers receive additional support from their school; and the majority of those who inform school staff about their caring role feel like there was ‘no point’ is telling them (Sempik & Becker, 2013).
    • Since 2015, national funding providing breaks for carers has fallen by 42% (Paddison & Crellin, 2022).
    • Many carers are worried about the impacts of not getting a break from caring (Carers Week, 2022).
  • The COVID-19 pandemic has put additional pressures on carers:
    • 81% of carers have taken on additional hours of care as a result of the pandemic (Carers UK, 2021).
    • Over two thirds (69%) of carers state that their mental health has become worse due to the stresses of providing care during the pandemic (Carers UK, 2021).

Access

Barriers to accessing support services faced by carers include:

  • Structural barriers: 2 in 3 carers feel they need additional support to be able to look after their own health and wellbeing, making this their top priority for support services (Carers UK, 2021). Carers from minority ethnic backgrounds are more likely to have not accessed social care services, due to additional barriers such as concerns about cultural appropriateness (Greenwood et al., 2015).
  • Health and social care system barriers: carers may face barriers to accessing community social care, including practical barriers (such as poor service availability) and attitudinal barriers (such as not seeing the need for services) (Greenwood et al., 2015).
  • Individual barriers: for example, carers often find it difficult to access medical care, with 39% reporting that they have put off medical treatment due to their caring responsibilities (Carers UK, 2012).

In particular, many young carers are ‘hidden’ from support services. This may be due to a lack of awareness amongst professionals about young carers’ needs; young carers being uncertain about what support they are entitled to or being unwilling to seek formal support; and unclear division of responsibility between adult and children’s services (Khan, 2016).

Experience

The most recent ‘Experts by Experience’ carers’ survey disseminated by Cambridgeshire County Council in August 2022 had 178 responses. No responses were received from carers under age 26, so does not capture the experiences of young adult carers.

This survey suggested that there is a high level of unmet need for carers across the region, particularly around support for employment, education and training (EET) and transitions, as there were substantial gaps in the number of carers who felt these types of support were important compared to those receiving support.

Figure 79b: The proportion of carers rating different types of support as important, and the proportion receiving support. 

The most common barriers to accessing support highlighted by carers were: not knowing what support they are eligible for (54%), not being aware of what support is available (49%), the support they need is not available (27%), is not provided at convenient times (22%), or they would need respite to access it because they are unable to bring the person they care for with them (22%).

A recent local report into the experiences of people caring for family members with mental health conditions, carried out from 2019 to 2021, found that (Wells & Sidney, 2021):

  • Some carers felt ‘excluded or exploited’ by mental health professionals; and there could sometimes be an unexpressed and uncomfortable tensions about what carers could reasonably be expected to provide for their loved one.
  • Carers were often grateful for the support their loved one received for their mental health, and often praised individual staff. However, they raised issues with the wider mental health system staff worked in.

Outcomes

Further research is required to build the local and national picture of mental health outcomes for carers.

Additional resources

References

Full list of references is included at the end of this chapter.

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