Women & Girls' Experiences of Caring & Parenting Sept 2015

Women & Girls’ Experiences of Caring & Parenting across the Life-Course

What Women Want Group/ Women, Caring & Parenting Task & Finish Group

August 2015

Section

1

2

Contents

Pages

Lynn’s Story

4-5

Introduction

6-7

Main Findings

8

Background

9 - 23

2.1

Definition of Family

9

2.2

Think Family & Whole Family Approaches

9 - 11

2.3

Carers

11 - 18

2.3.1

Women as Carers

12

2.3.2

Reduction in Benefits, Support & Financial Impact

13 -14

2.3.3

Impact of Caring

14 - 16

2.3.4

Young Carers

17 - 18

2.4

Parents

18 - 23

2.4.1

Liverpool’s Forthcoming Parenting Strategy

19 - 20

2.4.2

Parental Mental Distress

20 - 21

2.4.3

Parent Carers

21 - 22

2.5 3

Grandparent Care

22 - 23

Findings

23 - 49

3.1

Equality & Diversity Monitoring

24 - 27

3.2

Women & Girls as Carers & Parents

28 - 38

3.3

The Impact of Caring

38 - 40

3.4

Feelings about Caring & Parenting

41 - 46

3.5

Support that Women & Girls Want

47 - 49

4

Discussion & Conclusions

49 - 50

What Would Good Support Look Like?

51

Recommendations

52 - 53

We’re the Foundation on which Everything is Built

54

6

References

55 - 60

Appendix 1

Task & Finish Group Members

61

Appendix 2

Focus Group & Questionnaire Questions

62 - 66

Appendix 3

Local Organisations Providing Services to Carers & Parents

67 - 68

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Acknowledgements

Liverpool Mental Health Consortium & the Task & Finish Group on Women & Girls’ Experiences of Caring & Parenting across the Life-Course would like to thank first & foremost the women who took part in this work & shared their experience with us, whether through a focus group, questionnaire, individual response, workshop participation or on-line survey. All of their insights have shaped this report & recommendations.

Many thanks to Carol Bernard (Mersey Care NHS Trust) & Jane Weller (Liverpool City Council) for support & advice that helped shape the work; Afrah Qassim (Community Development Worker), Anne Simms (PSS Wellbeing Centres) & Louise Wardale (Barnardo’s Action with Young Carers) for facilitating the focus groups; Judith Mawer for ably facilitating & leading the Workshop; & to PSS Family Impact Project & Mary Seacole House for taking the time to encourage the women they work with to fill in the questionnaire. Thanks also to Gail Porter, Programme Director & Suzanne Metcalfe, Assistant Director Early Help (Liverpool City Council), & Joan Bennett, Commissioning Lead for Carers (Liverpool Clinical Commissioning Group) for guidance with strategic alignment.

Thanks go to Sarah Butler-Boycott (Liverpool Mental Health Consortium) for capturing the issues & pulling together the work of the Task & Finish Group in this report.

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Lynn’s Story (shared at the Workshop) My name is Lynn & I’d like to share some of my life story with you. I’ve thrown the towel in more times than I’ve had hot dinners, & believe me I’ve had plenty of hot dinners! But there’s always been something inside me that’s made me try again, & I realised, albeit only a few years ago, that I’ve always had hope in my heart. Even as a little girl I hoped that one day I would feel happy, even then I seemed plagued with depression, & even in my adult life being divorced twice & raising 4 children on my own seemed like an impossible task.

Having my 6 year-old first-born son, Alan, being snatched away by my first husband 26 years ago had left me broken & feeling unable to cope with anything. I was very lucky to have the involvement & support of Barnardo’s, as my twin daughters became my young carers &, thanks to them, we had a quality of life that we would not have had.

About 8 years ago, I was invited to my daughter’s flat in Leeds. I had not travelled on my own for many years, never mind go on a train, but I wanted to go – partly to see my daughter’s first home & mostly because I needed a break from the difficulties at home. My youngest son, aged 13, had been expelled from school for ‘naughty’ behaviour &, even though I didn’t believe he was naughty but probably needed extra help, I had no faith in myself to either disprove this or indeed try to help him. So, as anxious as I was, I set off from Lime Street. After some time, I started to panic & texted my daughter to say that I had just realised I was sitting in the first-class compartment with only a standard ticket. I had visions of being thrown off the train & called all sorts! My daughter rang me, laughing, & said ‘oh well, you’ll get a free cup of coffee & a biscuit’. I was not impressed with her attitude as I couldn’t see the funny side - I was expecting her to have all the answers as to what I should do.

When I came off the phone, a calmness surrounded me & my mind was blank.

Maybe just telling someone of my predicament had helped to remove some of the stress. Before I know it, I heard the conductor moving closer & the calmness helped me to hear my answer. With a beaming smile & such confidence, I gave the conductor my ticket & my debit card & said ‘I’d like to upgrade please’. With a quick swipe, all was sorted, & I actually got to enjoy the most expensive cup of coffee & biscuit I’d ever had!

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We’ve had such great laughs about that since &, even though it took a few more years, they’ve been the kind of stories I’ve been able to reflect on with a calmer more positive approach. The next 5 years were spent in or on my bed, confused about being a mum or a carer, either way failing to get my son any kind of assessment that I knew he needed & feeling useless. I was briefly reunited with my son Alan around that time. It didn’t end up how I wanted it to be, but that experience has also taught me acceptance & to trust my instincts. With hope in my heart, I know it’s not the end.

I believe that was the start of learning how to heal myself. An opportunity that I was now ready for opened up to me a year last September when I went to Blackburne House College to train as a beauty therapist. Yes, I had little blips, but I’ve not thrown in the towel for quite some time now. I really enjoyed my experience &, as well as achieving 9 certificates, I got Student of the Year award & gave a wonderful speech! Now, I go to the carers’ centre where I’m learning IT skills, as well as getting the support I need. My son has finally been diagnosed with ADHD - who knew, eh?

It’s made a difference with me knowing what we’re dealing with & acceptance that I’m a carer & I know eventually he’ll get the right support for himself & will start enjoying his life too. I can now see a positive future – helping my daughter in her charity, Cloud 8, where we’ll both be able to give therapies to those in need. After all, we were once like that &, no matter how long it’s taken us, we’re ready to turn the tables now.

Lynn Parker

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Section 1: Introduction Liverpool Mental Health Consortium aims to improve mental health services in Liverpool by offering opportunities for those who have experienced mental distress to develop a collective voice about their experiences, share opinions and insights, and influence the planning, delivery and evaluation of mental health services. The Consortium’s What Women Want group has been providing a platform for the views and aspirations of women service users for several years, with the membership bringing together a wide range of organisations and women service users in order to give a strategic lead on improving mental health services for women.

1.1 Aims This is the 3rd of a programme of 3 Task and Finish groups which the What Women Want Group has held in the last 18 months. It focuses on Women & Girls’ Experiences of Caring & Parenting across the Life-Course, with the group meeting 5 times between September 2014 & February 2015.

A great deal of positive work, across both Children’s & Adult services in Liverpool, has been developed in order to address & support the needs of the whole family, including the Early Help Strategy & Early Help Assessment Tool; Liverpool Families Programme (Liverpool City Council’s response to the Department for Communities & Local Government initiative for working with families with complex & multiple problems); forthcoming Parenting Strategy; Family Rooms; & Public Health work on prevention across the life-course. Strong alignment across all strategies, policies & procedures has been ensured, with children’s parent & family needs viewed within the wider framework of the ‘Think Child Think Parent Think Family, Think Community’ model. The group were clear that they wanted to avoid any duplication of work, & agreed the following aims: 

Within the context of Whole Family Approaches, to look at the impact on women & girls of caring responsibilities, including parenting, across the lifecourse



To consider protective factors & resilience promoted through women & girls within the whole family, as defined by them

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

To explore the opportunities & levers for change which support on-going implementation of Whole Family Approaches



To consider what the model of co-production means, & to support the city’s strong direction of travel in promoting Whole Family Approaches



To produce an evidence-based report & recommendations for presentation to strategic decision makers, commissioners & service providers, taking into account the views & experiences of women & girls with caring & parental responsibilities.



To launch the report, in partnership with Mersey Care NHS Trust, at a Think Family/Women’s Mental Health event to celebrate International Women’s Day in March 2015

1.2 Method In order to do this, the group agreed to: 

Collate evidence relating to the impact of caring & parental responsibilities across the life-course



Identify local services & sources of support



Collate relevant local data, including equalities data



Facilitate an interactive workshop to capture experiences of caring & parental responsibilities across the life-course



Conduct interviews with women & girls who have caring & parental responsibilities

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Main Findings 121 Women & Girls 35% Parents 21% Carers 20% ‘Sandwich’ Carers 15% Young Carers 5% Young Adult Carers

23% chose to be a Carer

40% chose to be a Parent

57% have support from family 52% have support from friends 52% have support from a Voluntary Organisation

Carers’ Feelings Feeling responsible Anxiety & worry Resentment, frustration & anger Grief, guilt & loss Pride Self-Esteem M Strengthened relationships

60% caring for 50 + hours per week

50% have only 1-12 hours to themselves each week

Negative Impact on Life: Choice & control 91% Time for themselves 89% Emotional Wellbeing 85% Education & Employment 83% Sleep 82% Physical Health 82% Relationships 79%

Feelings about Future Optimistic about the future 30% Pessimistic about the future 20%

Parents’ Feelings Loneliness Anxiety Guilt Overwhelmed Happiness Rewarded 8

Section 2: Background

2.1 Definition of Family The family as a specific blend of social relations has been constructed & reconstructed in many forms throughout history, reflecting socio-cultural, economic, political, temporal & spatial context. Morris et al (2008) identified a lack of research into the everyday lived experience of families with multiple difficulties. They define family as self-determined & unique to each family member, inclusive, not grounded in immediacy or proximity, & inconsistently used. As well as highlighting the lack of coherent approach to the definition of the term, Morris found that much of the literature around the family is based on parenting &, in particular, parenting strategies that centre on mothers.

Wider debates based on broadening the notion of family to reflect everyday practices challenge assumptions. A broad definition of family includes recognition of the range of people that are crucial to the social functioning of social units & not confined to kin relationships. It recognises the role of children, young people, & older people, not only as care-receivers but as integral to wider relationships of care. Such relationships are not necessarily child-centred &, therefore, family embraces those who do not have a child-caring role. It also acknowledges that the family is fluid & ever-changing in social space. During the course of this piece of work, the Task & Finish Group were clear that the term ‘family’ should be defined by the women participants themselves.

2.2 Think Family & Whole Family Approaches The publication of Think Family: Improving the Life Chances of Families at Risk by the Cabinet Office’s Social Exclusion Task Force (Social Exclusion Task Force 2008) signalled an intention across government to develop integrated systems of services able to respond to complex difficulties sometimes faced by families. Services which support family, it is argued, are those which build on ‘family strengths’ & are tailored to their specific circumstances. Achieving ‘Think Family’ would mean that there is ‘no wrong door’ for families to initially go through. This particular policy stream has also

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focused on practices & interventions that seek to work with the family as a collective, commonly referred to as ‘whole family approaches’.

In July 2009, the Social Care Institute for Excellence (SCIE) published a guide called ‘Think Child, Think Parent, Think Family: A Guide to Parental Mental Health & Child Welfare (SCIE 2009). Between 2009 & 2011, SCIE worked with 5 implementer sites in local authority areas in England & 5 Health & Social Care Trust sites in Northern Ireland. ‘Think Family’ denoted a whole-family approach to service delivery that was related to, but distinct from, the former cross-governmental Think Family initiative.

Liverpool had been developing its Whole Family Approaches over a considerable period of time & were nationally selected on the basis of promising practice to become one of the 5 implementer sites, with partners including Barnardo’s, Mersey Care NHS Trust, Liverpool City Council, Liverpool Mental Health Consortium, Liverpool Primary Care Trust (now Liverpool Clinical Commissioning Group), & Child & Adolescent Mental Health Services.

Through this work, a number of key strategic & service developments have been realised leading to improved support & outcomes for parents experiencing mental distress, young carers & families across the city. These have included development of & training on the Adult & Children’s Family Assessment & Common Assessment Framework (CAF) Pathway, which is now the Early Help Assessment Tool (EHAT); Think Family awareness sessions; Family Rooms within acute mental health inpatient settings; Young Carers assessment & support planning; recruitment of Family Support Workers in Adult Community Mental Health Teams; Message in a Bottle (emergency planning tool); Keeping the Family in Mind Resource Pack; & support within schools including a Young Carers lead, toolkit & posters; & significant workforce development.

It is worth noting, however, that Think Family & Whole Family Approaches have not proceeded without criticism. Murray & Barnes (2010) state that the need for a ‘Whole Family Approach’ is advocated so that adults can become more effective parents & argue that this promotes a limited notion of family that embodies different & competing discourses of family life. In their review of documents, they note that the term ‘family’ is used in reference to children, including when the focus is on care for adults e.g. caring for adults in order to enable them to care for children. The concept

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of family here, they say, is locked into normative assumptions about the role of women within the nuclear family, & the family is constructed in a particular stage of the life-course that is associated with childbearing & rearing.

Clarke & Hughes (2010) state that although Think Family stated the importance of family-minded practice ‘for all families’, in parallel it emphasised the need to engage ‘families at risk’ of social exclusion. They argue that, whilst the identification of a small number of families being ‘at risk’ provides opportunities to consider how to deliver support to those who need it, it is demarcating a particular group of families as having complex needs best met through identification as a public concern. If a potential source of resistance to seeking support is to be advocated, there is therefore a need to question the language used to describe the family & the particular ‘problem’ to be tackled. They argue further that approaches specifically targeted at the whole family may not respond adequately to individuals who have needs in relation to e.g. safety, experience of disability or caring responsibilities.

Whole family support might, therefore, be necessarily understood as additional to the identification of individuals’ roles & relationships &, instead, seek to provide a ‘joined up’ response to difficulties faced in the private context of family life.

2.3 Carers The bulk of care is, & has always been, provided within families, with twice as many unpaid carers - nearly 6.5 million - as there are paid staff in the health & social care systems combined. Demand for unpaid care is on the increase, with the 2011 census showing an 11% rise in the number of carers over the last 10 years (Census 2011). Whilst the total number of carers rose by 11%, the number of carers over 65 has risen by 35% since 2001 (University College London 2015).

According to the 2011 Census, over 50,100 people in Liverpool stated that they provided unpaid care. In addition to being above national levels, Liverpool has the greatest level among the 8 core cities. (Liverpool City Council 2012). As the Carers UK Manifesto points out, demographic changes mean that not only are there more carers, but there have been sharp rises in the proportion of people caring for over 25 hours per week, & a 25% rise in the number caring for 50 hours or more (Carers UK

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2014). The percentage of carers in Liverpool providing more than 20 hours of care (48%) is substantially above national levels; & the percentage providing more than 50 hours of care the highest among the core cities (Liverpool City Council 2012).

Most carers (40%) care for parents or parent-in-law; over a quarter (26%) for spouse/partner, 8% for disabled children, 5% for adult children, 4% for grandparents, 7% for other relatives, & 9% for a friend or neighbour (NHS Information Centre for Health & Social Care 2010).

The care provided, unpaid, by the nations’ carers is worth an estimated £119 billion per year - considerably more than total spending on the NHS (Carers UK 2014).

Linda Pickard, in projecting supply & demand up until 2041 (Pickard 2008), estimates that in the UK nearly 3.5 million additional carers are needed by 2037. By 2017, we will reach the tipping point when the numbers of older people needing care will outstrip the numbers of working age family members available to meet the demand (Carers UK 2014).

2.3.1 Women as Carers Despite significant changes over the past 50 years, women are still the nation’s carers, with many balancing care responsibilities & employment throughout their lives. This can have significant implications for work opportunities, incomes & pensions. The over-representation of women as carers contributes to the underrepresentation of women in positions of power & influence relative to men. In terms of both representation & attainment, the gaps between older women & other demographic groups are even more glaring than they are between women & men in general (Ben-Galim & Silim 2013). According to the 2011 census, almost 6 in 10 (58%) of carers are women, unchanged from the breakdown in 2001.

The

percentage of carers who are female rises to 60% for those caring for 50 hours or more a week. Carers UK Commission on Older Women (2014) states that caring falls particularly on women in their 40s, 50s & 60s, with 1 in 4 women aged 50-64 having caring responsibilities for older or disabled loved ones, compared to 1 in 6 men. Women are more likely than men to be ‘sandwich carers’, with the peak age for the sandwich generation of 40-49 years being slightly younger than the peak age for carers in general of 50-59 years, & more likely to give up work in order to care.

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2.3.2 Reduction in Welfare Benefits, Support for Carers & Financial Impact The 1995 Carers (Recognition & Services) Act gave carers entitlement to request an assessment of their ability to continue in the caring role. The Carers & Disabled Children’s Act (2000) built on this to allow local authorities to also offer support to carers. The 2006 Work & Families Act made provision for carers to request flexible working hours from their employer. The Care Act (2014) further built on previous legislation, giving carers & those they care for the same entitlement to care & support.

However, as a result of women’s over-representation amongst carers, reductions in practical & financial support for carers & rising demand for unpaid care are likely to have a disproportionate effect on women, as is the reduction in the number of people receiving state care, the fact that people are living longer, & rising life expectancy for those with disabilities. Research undertaken by the Institute for Fiscal Studies (2012) has shown that low-income families with children, & pensioners, will be most negatively affected by the austerity measures introduced between 2010 & 2014.

In March 2012, House of Commons researchers analysed the effects of austerity measures on men & women (Guardian 2012). The figures, based on Treasury data, show that of the £14.9 billion raised from the government’s 5 spending reviews since 2010, £11.1 billion had come from women. Middle-aged women are by far the worst hit because of the high levels of unpaid care undertaken by the ‘sandwich generation’. This group is also facing an increase in the state pension age & is more likely to be affected by job losses - Between 2010-12, unemployment among women aged 50-64 rose by 39% in contrast to a 5% increase for all persons over 16 (Observer 2012). This is thought to be partly attributable to women giving up work to care for others due to the rising cost in care. Those who care for elders & others are doing more to fill gaps left by increases in social care costs & withdrawal of public services. The costs of care can leave a long-lasting legacy of poverty & hardship.

Women’s average personal pensions are only 62% of the average for men (Fawcett Society 2012). In addition, women live longer than men, often spending their later years living alone or caring for others (Busby 2014).

Carers UK inquiry on Carers & Family Finances (2014) & its subsequent Carer Manifesto (2014) noted that 1 in 3 carers are over £20,000 per year worse off as a

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result of caring. The cumulative total cuts to carers’ incomes will reach over £1 billion by 2018. On top of decreased support from social care services, many carers facing very significant cuts to disability benefits & support with housing costs & council tax, as well as the introduction of Universal Credit. 60,000 carers have been hit by the bedroom tax, 240,000 carers are paying extra council tax, & 24,000 fewer carers will get Carer’s Allowance when Personal Independence Payment is introduced. For many, Direct Payments are not covering the cost of care. A quarter (24%) of those caring for someone with a direct payment are supplementing the payment as it does not cover the cost of care. Carers Allowance is the lowest benefit of its kind; at just £61.35 per week, it is worth less than £1.75 per hour for a carer caring for 35 hours a week. Carers benefits are being cut by £1 billion from 2011-2018 1 in 3 carers cannot afford to pay their utility bills, & 44% have ended up in debt as a result of caring.

Findings from Carers UK Commission on Older Women (2014) point out that despite this, the number of people receiving care services is reducing. In 2012/13 this stood at 1.3 million, which is down 9% from 2011/12 & 25% from 2007/08. The Association of Directors of Adult Social Services 2013 Survey found that, in the last 3 years, some £2.68 billion of savings have been made by adult social care - 20% of net spending.

2.3.3 Impact of Caring Employment Over 3 million people combine caring with paid work, the equivalent of 1 in 8 employees in any workplace (ONS 2013), & 2.3 million people have given up their jobs to care at some point in their lives. Over half of carers cited problems with accessing suitable care services as the reason they gave up work (Carers UK 2014).

The ability to work was affected by a number of factors - resistance of the person they cared for to external support, inability to afford childcare or adult care, inadequate information about sources of support, & impact on their own health.

Women were 4 times more likely than men to have given up work to care. Whilst real progress has been made in normalising childcare in the workplace, carers often

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report that this is not the same for caring for older or disabled relatives (Carers UK 2014).

Isolation, Loneliness & Relationships The Carers UK ‘Alone & Caring’ report (2014) found that 8 in 10 carers had felt lonely or socially isolated as a result of caring responsibilities; 57% had lost touch with friends & family; 49% had experienced difficulties in their relationship with their partner; & 38% of carers in full-time employment had felt isolated from others at work. Carers from BAMER (Black, Minority Ethnic & Refugee) communities were more likely to say that not being comfortable talking to their friends has made them feel lonely & isolated.

The Caring & Family Finances Report (Carers UK 2014) found that 39% of respondents found it hard to maintain social networks because they did not have anyone to talk to about caring, & 75% said that it was because people do not understand the impact that caring has on their lives. Losing the support of friends & family can have a big impact on carer resilience, yet without more practical support & time away from caring, carers are not able to benefit from emotional support from others.

Health & Wellbeing In their Carer Manifesto (2014), Carers UK report that 80% of carers said that caring has had a negative impact on health, with half saying they had experienced depression. This reflects much of the research in the area that points to long-term caregiving being associated with declines in quality of life & life satisfaction, & an increased risk of depression (e.g. University College London 2015). 2/3 of older carers have a long-term health problem or disability themselves. Giving up caregiving is also associated with depression. The overarching theme from previous research & reports is when carers & care recipients do not believe the care recipient’s basic needs are being met, this causes carers a great deal of distress & anger towards services & increases the carer burden. Carers assert that the needs of carers & care recipients are interconnected & should not be seen as separate.

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Satisfaction with Support & Services Carers at Breaking Point (Carers UK 2014) is based on responses from 5,200 carers to the State of Caring Survey. It found that insufficient support from health & social care services is leaving carers isolated, burnt-out & unable to look after their own health. Whilst there are a variety of factors contributing to carers reaching breaking point, there are some clear themes - Most commonly mentioned by respondents were exhaustion, physical strain & a lack of support. Carers also report high levels of stress, anxiety, worry & depression. Personal support networks are eroded by caring, as they lose contact with friends & families - unable to take the time to socialise, pursue their own interests or seek support from others 1 in 5 carers received no practical support with caring, & many reported having to ‘fight’ for support, becoming exhausted by bureaucracy & feeling no-one is taking responsibility for their case. Although most of the carers (84%) caring for at least 50 hours per week had a GP who knew of their caring responsibilities, most of these (71%) said that their GP didn’t do anything differently to accommodate them. Carers felt that the bar to qualifying for support is often set so high that they will have to be at breaking point to qualify for help. Even where families do qualify for social care support, they frequently described services which are inadequate, unreliable or poor quality. Complaints were around ‘flying visits’ from domiciliary care services, lateness or unreliability of services, poorly trained care workers, & lack of suitable services.

Many said that professionals focus involvement & consultation on patients alone & fail to recognise the importance of involving them as carers. In a related report on Quality of Care & Carers (Carers UK 2014), priorities for improving care included keeping consistent staff so that carers know them, providing better training, giving staff more time to carry out tasks, paying staff better, having better quality regulation, & ensuring that carers worries are acted upon.

Carers from Black, Minority Ethnic & Refugee communities were found to be less likely to receive practical & financial support, & more likely to miss out on accessing support for longer. Carers with disabilities were significantly more likely to give up work to care, much less likely to be in paid work alongside caring (18% in contrast to 33%), & more likely to be on lower incomes or have no one in their household in paid work.

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2.3.4 Young Carers A young carer is a child or young person under the age of 18 who provides care to another family member, usually an adult, who has a physical illness/disability, mental health problem, sensory disability, problematic use of alcohol or drugs, or who is HIV positive. The level of care they provide would usually be undertaken by an adult &, as a result of this, has a significant impact on their childhood (Liverpool City Council 2012). Census statistics for 2011 reveal that there are 166,363 young carers in England, although this is likely to be an under-representation as many remain under the radar of professionals.

Results from the 2011 census show that over 5,100 people in Liverpool aged under 25 identified themselves as providing unpaid care, equating to 3.5% of that group.

The level of unpaid care provided by young people in the city is the highest among the 8 core cities in England, & significantly above both national & regional levels.

Of those young people in Liverpool providing unpaid care, 30% do so for more than 20 hours each week. Data captured by Barnardo’s Action with Young Carers is the most reliable source of information about young carers in Liverpool. In 2012-13, the service supported 156 young carers. Of that cohort, the primary problem for the person being cared for was a mental health problem, accounting for over 1/3 of young carers. Mental health problems were also a factor identified in caring for people with drug & alcohol issues, & physical disabilities. The overwhelming majority of young carers (90%) known to the service were caring for their mother. The Liverpool Public Health Observatory report (2012) highlights that 1/3 of young carers care for someone with a mental health problem. Children with a parent who has a mental health problem are known to be more likely to suffer from low levels of mental & emotional health themselves, & this group emerges, therefore, as a particularly vulnerable cohort.

Young carers living in Liverpool tell us that Young Carers (Barnardo’s Action with Young Carers Liverpool): 

Have no one to talk to



Are scared to tell anyone about their home circumstances



Are tired and hungry, frightened & isolated

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

Are stigmatised, ashamed & guilty



Are worried about things like finances or being put into care



Are looking after siblings as well as parents

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Have difficulty getting to school on time/stay in the whole day

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Find it difficult to concentrate & hold on to their tempers

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Need information & explanations



Lack confidence

2.4 Parents The Green Papers Supporting Families (Home Office 1998) & Every Child Matters (DfES 2003) - preceding the Children Act (2004) - emphasised a commitment to expanding provision of family support services, accompanied by a shift towards prevention & early intervention. Engaging parents in preventive mainstream services, such as schools, family centres & children’s centres, became a key issue. In contrast to research on the impact of caring, however, comparatively little research addresses the impact of parenting on women specifically, although research on particular groups of parents & in relation to particular services exists.

The 2010 Parental Opinion Survey (Department for Education

2010), a

representative sample of 2,319 parents in England, reported that most parents (93%) were confident in their parenting ability & 82% said they would know where to go if they needed to obtain information or advice about general or specific parenting issues. It is clear, however, that this is not true for all parents. Research by the Joseph Rowntree Foundation (2007) found that barriers to involvement in mainstream services included a lack of knowledge about local services & how they could help, practical considerations such as geographic location & cost of public transport. Social barriers were faced particularly by parents from Black, Minority Ethnic & Refugee communities, disabled parents & those living in poverty, with suspicion & stigma associated with not wanting to be labelled as failing parents, acting as deterrents.

The issue of childcare is an important one for women. A Review of what women want in relation to childcare was carried out by the Equality & Human Rights

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Commission in 2010 (Campbell-Barr & Garnham 2010). This review indicated that, whilst only 29% of parents believe that childcare is the primary responsibility of the mother, over ¾ of mothers stated that they are primarily responsible for childcare.

Childcare is not a simple issue of preference. The ability to pay is a key determinant in accessing appropriate childcare. Affordability divides families & is a particular barrier to low-income & lone-parent families.

Evidence repeatedly shows that women who become mothers lose out at work, both financially & in terms of status & progression prospects (Resolution Foundation 2013). This process has been termed the ‘motherhood penalty’ & is estimated to reduce average earnings by a fifth. Childcare costs in the UK are the highest in the European Union & families pay on average 26.6% of their income on childcare fees, compared to an OECD (Organisation for Economic Co-operation & Development) average of 11.8% (Rogers 2012). The Equality & Human Rights Commission research indicated that a quarter of non-working mothers with pre-school children mentioned the affordability of childcare as a reason for not working. Part-time & nonworking amongst mothers can underpin the gender pay-gap, lead to lower lifetime earnings & poorer benefit & pension entitlements.

2.4.1 Liverpool’s Forthcoming Parenting Strategy In order to inform & develop Liverpool’s Parenting Strategy & Delivery Plan, 263 people took part in 25 focus groups & 1 classroom discussion comprising of a range of parents, children & young people. The Summary of Findings (Ward 2014) from these focus groups found that people valued a holistic, family approach; & family, friends & other parents were seen as a source of emotional, practical & social support, as well as information. Significant concerns were expressed about the reduction in services, cuts to children’s centre budgets, lack of capacity to support families & further cuts in provision. The first step into services was seen as the hardest - available services are good once you get into them, but finding & accessing them can take too long. Accessing one targeted service can reduce isolation & facilitate access to other services. Services were seen as having a role in establishing groups so that peer support is available, & value was attached to

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continued professional input into peer support groups. Stigma & labelling was identified as resulting from identification of a family as ‘not coping’.

During the focus groups, particular attention was drawn to the parenting support needs of families with particular characteristics or needs, including parents with teenagers, young parents, parents with disabilities or whose children had disabilities, those who were homeless, affected by substance misuse & parents from Black & Minority Ethnic communities. For parents with teenagers, a gap was identified in support & parenting courses, & also in involving teenagers in support provided.

Some parents with disabilities, including mental health problems, said that their health problems or disability made them more reluctant to identify their parenting needs. Participants discussed the pressure on parents to be seen as ‘coping’ as an issue for those affected by substance misuse, as well as lack of support for addiction problems until the point that safeguarding is involved. A gap in support for parents who used English as a second language was identified, as was the need for a forum or parenting course where parents could speak about cultural childrearing practices without fear of raising safeguarding concerns.

2.4.2 Parental Mental Distress The mental health & wellbeing of children & adults in families where a parent has a mental health problem are closely linked, & it can be a struggle to get accessible & effective support that addresses children’s needs & recognises the parental responsibilities of adults experiencing mental distress. Barnardo’s Keeping the Family in Mind Project reports that parents experience: 

Fear of losing children; the reality of it happening



Uncertainty & complexity



Feeling of being ‘on trial’ about parenting abilities



Fear of asking for help



Isolation & stigma



Impossibility of parenting without family & social networks

Much of the Social Care Institute for Excellence’s Think Family work, which Liverpool was an implementer site for, aimed to address this. The Family Support Worker

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Project delivered by Mersey Care NHS Trust (Mersey Care NHS Trust/Liverpool PCT/SureStart Children’s Centres, 2012), for example, initially worked with parents who had children under 5 years of age, but now supports parents with mental health problems who have children under 18 years of age – In the first 18 months of the project, 187 families with complex needs, with approximately 320 children between them, have received support. Through this, many barriers to accessing mainstream children’s services have been addressed, including practical barriers (e.g. transport & childcare), as well as acceptability factors (e.g. sensitivity to ethnicity, sensitivity to parents’ other needs & priorities). As a result, more children in Liverpool who have a parent experiencing mental distress have accessed children’s services, particularly children’s centres, & more parents have attended & engaged in services delivered by children’s centres. Adult mental health staff have taken greater account of parents’ priorities & desired outcomes & their perceptions about the cause of their mental distress. Children’s workers have increased understanding & awareness of mental health issues & how that impacts on parents.

2.4.3 Parent Carers Looking at the impact of isolation on families with disabled children, Contact a Family (2014) found that 72% of families experience mental health problems such as anxiety, depression or breakdown due to isolation. Almost half (49%) have felt so unwell that they asked their GP for medication or have seen a counsellor. 57% say that the lack of support means they are isolated & not able to work as much as they would like. Over half (56%) of respondents felt that the cause of their isolation is due to lack of support from statutory services. Langerman & Worall (2005) found that only 16% of mothers with disabled children work, compared with 61% of mothers with non-disabled children & that it costs 3 times more to raise a disabled child than a non-disabled child.

Beresford et al (2007) found that parents’ desired outcomes focused on maintaining or enhancing their personal identity, their physical & emotional wellbeing, & their skill & knowledge base. They also expressed a desire for a better balance between their caring & parenting roles. Most parents felt they spent too much time doing caring tasks & not enough ‘quality’ time with their disabled child or their non-disabled

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children. Many parents felt they had ‘lost’ aspects of their personal identity, with the role of parent/carer dominating how they felt about themselves & how other people viewed them. Accepting & adjusting to the child’s diagnosis was an ongoing emotional task. Watching the child suffer was emotionally distressing. Accessing & dealing with services was identified by many parents as stressful & distressing.

Parents wanted sufficient practical & financial resources to meet the needs of their disabled child & the rest of their family. Parents also wanted to feel confident about the services they were using & to know that professionals were working in partnership with them. To promote emotional wellbeing, parents wanted to feel that responsibility for their child was being shared with formal support services.

The study highlights the impact that caring for a disabled child can have on the lives of parents & families. The findings also draw attention to inadequacies in current systems of identifying support needs of parents, where the focus lies on parenting capacity & most parent support services are actually provided to the child. There needs to be recognition that funding services for parents can be an effective & legitimate way of supporting a disabled child’s development & wellbeing.

2.5 Grandparent Care Between 2009/10 & 2010/11, the number of children receiving informal childcare from their grandparents went up from 1.3 million to 1.6 million -11.7% to 14.3% of all children aged 0-4. Research by the Daycare Trust carried out in 2012 suggested that nearly 3.5 million adults in Britain provided childcare for their grandchildren. The Annual Childcare Costs Survey (Family & Childcare Trust 2015) found that 27% of families use grandparental care during term-time. Grandparents Plus & Age UK (2013) have estimated the value of grandparental childcare at £7.3 billion, almost double its value in 2004. Younger grandparents (aged 50-64) are the most likely to be providing care, often to enable parents, especially mothers, to work.

There is no available current data on the number of grandparents providing care in Liverpool, although organisations working with grandparents collect data for their own organisation e.g. The PSS Family Impact service is currently working with 45 grandparent carers who are caring for 65 children & young people. These

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grandparents have taken on the role of caring for their grandchildren as a consequence of parental problematic drug &/or alcohol use, involvement in the criminal justice system, or imprisonment. (Family Impact Service 2015) Any reduction in the availability of grandparental care is likely to lead to mothers leaving the labour market. Employment rates are lower for grandmothers than for women who are not grandmothers, reflecting the impact of motherhood on older women’s employment, as well as the role played in providing childcare to grandchildren. The research underlines that grandparents generally view providing childcare as a positive choice, but there is also evidence of women giving up work to provide childcare. Grandparents Plus (2013) note that the impact of older women’s lifelong contribution through caring needs to be properly recognised within national insurance & contributions-based benefits, whilst the planned extension of the right to request flexible working to all has the potential to make it much easier for grandparents to combine work with informal care, & to retain both mothers & grandparents in the labour force.

Section 3: Findings Women & girls were given the opportunity to share their experiences of caring & parenting across the life-course in a variety of ways. Although we cannot be sure how many (if any) individuals responded through more than one means, we received a total of 121 responses: 

56 women & girls filled in Questionnaires



22 women took part in a Workshop, facilitated by Judith Mawer



43 women & girls participated in 5 Focus Groups - Barnardo’s Action with Young Carers & Young Adult Carers (facilitated by Louise Wardale, Barnardo’s), PSS Wellbeing Centres (facilitated by Anne Simms, PSS), Arabic, Bengali & Polish women’s’ groups (facilitated by Afrah Qassim, Community Development Worker)

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3.1 Equality & Diversity Monitoring A section on Equality & Diversity monitoring was included in the Questionnaire. The majority of data in this section, therefore, comes from the 56 women & girls who completed questionnaires. It was not possible to gain the same level of detail from the workshop & focus groups, although some monitoring information from the focus groups was collected & is included here.

Marital Status

Marital Status

Civil Partnership 4% (2)

Cohabiting 9% (5)

Divorced 5% (3)

Married 37% (21)

Single 34% (19)

Widowed 5% (3)

Other 2% (1)

Prefer Not To Say 4% (2)

Questionnaire Responses (56)

Half (50%) of respondents were married, in civil partnerships or cohabiting although it was not clear how many of the women living as part of a couple had caring responsibilities for their partner. A third of the parents/carers who responded were single although this figure went up to 44% when divorced and widowed women were included.

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Sexuality

Sexuality

Bisexual 7% (4)

Heterosexual 77% (43)

Prefer Not To Say 16% (9)

Questionnaire Responses (56)

Over three-quarters of responses (77%) came from heterosexual women & girls, with 7% identifying as bisexual. It is not clear how many of the remaining 16% may have been lesbian or ‘other’.

Religion

Religion

Christian 39% (22)

Muslim 18% (10)

Sikh 2% (1)

None 18% (10)

Other 7% (4)

Prefer Not To Say 16% (9)

Questionnaire Responses (56)

66% of respondents identified as belonging to a faith group with almost 40% being Christian. 18% were Muslim and one woman was Sikh. 4 women (7%) preferred not to state their religion & 16% of women preferred not to disclose whether they had a faith or not. 18% said that they had no faith.

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Ethnicity

Ethnicity

Asian & White 1% (1)

Other Asian 3% (3)

Arabic 10% (10)

Bangladeshi 2% (2)

Bengali 7% (6)

Black African 3% (3)

Black African & White 1% (1)

Black Caribbean 1% (1)

Other Black 3% (3)

Indian 1% (1)

Pakistani 6% (6)

White British 47% (47)

White Irish 1% (1)

Other White 14% (14)

Questionnaire & Focus Group Responses (99)

The number of participants from Black & Minority Ethnic communities was higher than in the local population as a whole due to women being supported to participate in the work by Mary Seacole House & Afrah Qassim, Community Development Worker. Although nearly half of those who responded (47%) were from the majority ‘White British’ category, the ethnic mix of other participants was relatively wide with Arabic women (10%) & women from Bengali (7%), Pakistani (6%) & Polish (14%) communities making particularly welcome contributions.

Long-Term Disability

Long-Term Disability

Long-Term Disability 28% (16)

No Disability 68% (38)

Not Stated 4% (2)

Questionnaire Responses (56)

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A greater proportion of carers (46%) identified as having a long-term disability than parents (21%). As might be expected, the likelihood of living with a long-term disability increased with age - Whereas only 8% of those under 25 stated that they had a long-term disability, this rose to 21% in the 26-45 year-olds, & to 80% in those who were 46 or older.

Age

Age

1-12 Years 4% (2)

13-25 Years 18% (10)

46-60 Years 16% (9)

61-80 Years 2% (1)

26-45 Years 60% (34)

Questionnaire Responses (56)

The majority (60%) of women fell within the 26 - 45 year old age band. However, we managed to reach across the age spectrum, with good input from young people aged 13 - 25 (18%) & middle-aged women in the 46 - 60 age bracket (16%). 2% were young carers aged below 13, & we had 1 respondent from the 61 - 80 age range.

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3.2 Women & Girls as Carers & Parents

Caring/Parenting Role

Caring Role

Carer 21% (21)

Young Carer 15% (15)

Young Adult Carer 4% (4)

Parent 35% (34)

Parent Carer 5% (5)

Sandwich' Carer 20% (20)

Questionnaire & Focus Group Respondents (99)

Just over a third (35%) of respondents were parents, with a fifth of women & girls being carers, & a fifth so-called ‘sandwich carers’ - those who have caring responsibilities for people who are both younger & older than themselves. 5% were Parent/Carers - women who are parents of disabled children. Young carers & young adult carers accounted for a combined 19% of respondents.

Who are Women & Girls Caring for?

Who are Women Caring for?

Child 52% (50)

Child & Parent 9% (8)

Child & Partner 5% (4)

Parent 28% (27)

Parent & Sibling 1% (1)

Parent & Grandparent 1% (1)

Partner 1% (1)

Other Relative 2% (2)

Friend 1% (1)

Questionnaire & Focus Group Respondents (96)

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The majority (52%) of women were caring for a child or children, which might be expected, but over a quarter (28%) were caring for a parent or parents, 9% cared for children & parents, & 5% cared for children & partners.

Activity/Employment outside of Caring/Parenting Role

Activity/Employment Outside of Caring Role

Student 16%(9) Looking after Home/Family FT 36% (20) Not in Work 4% (2) Paid Work FT 20% (12)

Questionnaire Respondents (56)

Over a third (36%) of respondents looked after the home & family as their full-time occupation, but 20% were in full-time work, & 20% in part-time work in addition to their caring responsibilities. 16% were also in education.

In terms of how many women were caring for family full-time, there was little difference between carers (38%) & parents (42%). Carers (38%), however, were more likely to combine their caring role with full-time paid work than were parents (25%). The proportion of women in paid full-time work dropped substantially for parent carers (17%). It is worth noting that all of the young carers we spoke to juggled their caring role with school.

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Tasks carried out as part of women & girls’ caring & parenting role

Tasks 100% 0% 1 Accompanying to Appointments 77% (43) Medication Assistance 57% (32) Domestic Duties 80% (45) Emotional Support 82% (46) Ensuring Safety 66% (37)

Questionnaire Respondents (56)

Women & girls were asked to tell us which of the following tasks they carried out as part of their role, as well as being given the space to identify other tasks: 

Accompanying to appointments



Assisting with medication



Domestic/Practical help



Ensuring safety or wellbeing



Emotional support



Managing paperwork or finances



Parenting



Personal care



Physical help



Prompting & motivating

Carers described arranging appointments, shopping, cooking, cleaning, washing, financial management, navigating services & coordinating care packages.

‘My dad was ill with cancer & breathing difficulties. Even though I lived away from home, my mum depended on me for emotional support. I did not know how to cope with mum on my own.’

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‘My main caring role now is for my father & his partner who have a variety of physical & mental health support needs but live 3 hours away.

This causes a lot of stress/anxiety’.

‘Being involved with someone else means caring for their family as well: mum in law with Alzheimer’s - seeing her taken to a home & visiting regularly hurts my husband a lot.’

Young carers reported carrying out more of the tasks overall than other groups of women did, particularly in the areas of accompanying to appointments, assisting with medication, managing paperwork & prompting & motivating. They also described heavy lifting, arranging appointments, cleaning, physical support, personal care, feeding, cooking, emotional support, being the mediator, washing & dressing, shopping for food & other items, as well as caring for other siblings, taking them to/from school, keeping them safe, organising doctors/dentists, putting them to bed, & checking on them in the night: ‘I do everything, including support for hospital appointments & helping my mum with reading’ ‘Heavy lifting, shopping, medication, emotional support, helping mum & Nan upstairs, washing up, cleaning, making sure Nan doesn’t overdo it.’

‘Keep mum happy, help her take medication, remind her about appointments, & stop her from doing bad things’

Parents described juggling demands, cooking, cleaning, managing finances, maintaining the home, organising appointments, taking children to school & extracurricular activities, & helping with homework.

‘Became a mum of 3 children. One of my children had ADHD, ASD. His care took some training & change in our family life.’

‘Caring for my children - husband worked away so essentially on my own’

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‘As a parent, I had sole responsibility for the children - mine & 2 stepchildren & 2 boys who had no mother. Responsibility was financial, domestic & emotional’

Hours of Care Provided Per Week

Hours of Care Provided Per Week 50% 0% 1 Can't Quantify 10% (6)

1-10 hours 5% (3)

11-20 hours 9% (5)

20-30 hours 9% (5)

40-50 hours 7% (4)

50+ hours 25% (14)

24/7 35% (19)

Questionnaire Respondents (56)

Overall, the vast majority of women & girls described caring for over 50 hours per week or 24/7. This was true both for the majority of women who were parents & those who were carers, but was reported by a higher number of parents. The majority of women & girls up to the age of 45 reported their caring role taking up 50+ hours per week, but in those women older than 45 there was no majority, with the same number of women reporting 1-10 hours of care, 11-20 hours, 20-30 hours & 50+ hours. Young carers, in general, found it difficult to quantify the amount of care they provided, but for those who could quantify it, it was 50+ hours.

‘Really hard question to answer as I never have any time for myself; someone else always comes first.’

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Caring/Parenting Role - Wanted or Expected?

Caring: Wanted to or Expected to?

Expected 31% (31)

Wanted 25% (25)

Both Expected & Wanted 26% (26)

Necessity 12% (11)

Not Answered 6% (6)

Questionnaire & Focus Group Respondents (99)

Young & Young Adult Carers were most likely to describe their caring role as something that was either expected of them or was simply a necessity: ‘I didn’t really have a choice because I was the only one living with my mum’ ‘It was expected. I didn’t have a choice. I felt like it was my responsibility’.

‘I had to be because I was the only person living with my mum’ ‘Mum has always had mental health problems but they got worse & it meant that I need to care for her’ There was a noticeable difference between the responses from carers & those from parents to this question. 40% of women who were parents said that they wanted the role, compared to only 23% of carers.

‘At age 35, I had a negative relationship - caring responsibilities were forced upon me’ ‘This parenting role is a must for me - I want to & I have to as it’s my child & no-one else can look after her as I am alone in this country’ ‘I wanted to as it is my son who needs support & he only trusts & confides in immediate family’

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All of the Arabic women we spoke to, however, reported that although they wanted to take on the parenting role, there is also an expectation to take it on - an expectation to marry & have children young that can limit opportunities in life.

Women within the Bengali community stated that, although they wanted to take on the parenting role, caring for elderly relatives is expected of them & they don’t have a choice as not doing so would be talked about in the community & would bring shame on the family.

A theme that developed, particularly from older women carers, was the expectation placed on them as women to take on the caring role for parents & siblings, even when there were male members of the family who could have done this. ‘I live an hour away from my parents but still go once a week to give my mum respite, despite other family members who are male living only 5 minutes away & not offering/being asked to help.’

Time Women & Girls have for Themselves

Time for Self (Per Week)

Can't Quantify 10% (6)

None 10% (6)

Rare 2% (1)

1-12 hours 50% (28)

1 day 15% (8)

2 days 5% (3)

3 days 2% (1)

5 days 2% (1)

Varies 2% (1)

Not stated 2% (1)

Questionnaire Responses (56)

Half of all women & girls responding to the questionnaire, workshop & focus groups reported having only 1-12 hours to themselves each week. The proportion of women having only 1-12 hours to themselves was, however, higher for parents (60%) than carers (39%). Parents, women from Black, Minority Ethnic & Refugee communities, & young & young adult carers were most likely to report having no time at all. Bengali

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women highlighted that women in their community have only 1 morning session per week free to learn English & do some exercise. They stated that they are not allowed to go out all of the time as they are expected to be at home.

‘Sometimes it’s not that I do not have the time to do things for myself, it is just that when I do have time I’m just too tired!’

How do Women & Girls Look After Themselves?

How do Women Look After Themselves?

50% 45% 40% 35% 30% 25% 20% 15% 10% 5% 0%

Questionnaire Responses (56)

Spending time with family & friends was the activity reported by the largest number of women & girls as being a good way to look after themselves, with a variety of other activities being mentioned by lesser numbers.

‘I don’t have time to explore what hobbies I’d like to do’ ‘I spend time at the gym, but often can’t do this as I worry about leaving mum’ ‘My Mindfulness & Yoga help keep me in the present moment & they give me a positive healthy attitude to life’

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Where do Women & Girls Receive Support From?

Where do Women Receive Support From?

Child & Adolescent Mental Health…

Social Services 7% (4) Other NHS 9% (5) Adult Mental Health 9% (5) Voluntary Organisation 52% (29) Friends 52% (29) Family 57% (32) 0%

10%

20%

30%

40%

50%

60%

Questionnaire Responses (56)

Over half of the women & girls identified family, friends & voluntary organisations as sources of support. Of course, this also means that the reverse is true - almost half did not have any family & friends as support.

‘Between the ages of 7 & 12, my grandmother came to live with us. It was fantastic to have an adult to take responsibility & structure our lives. It was such a relief.’

Arabic women stated that friends & family were the main source of support, but said that they would be reluctant to discuss mental health with friends, family or GP. Half of all women up to the age of 45 identified family; this rose to 91% in those women over 45, although fewer sources of support were mentioned by this age-group overall.

Young carers were unanimously positive about the support they had received from Barnardo’s Action with Young Carers: ‘Being recognised as a young carer at 11 was the key to helping us get this understanding. Even though my mum would explain it wasn’t us, we still felt responsible. Having Barnardo’s Young Carers support meant things were explained & we had somewhere to express our feelings & also get some respite & some ‘normal’ kid/teenage time. This helped us to stay happy so we could bring our happiness home to our mum.’

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‘When adults & children’s services work together, it makes a big difference - all connected to help us as a family’ A number of women expressed dissatisfaction with services or had found no support available: ‘At age 21, I became a mum. I suffered severe Post-Natal Depression. No support as there was limited understanding & condition stigmatised at the time.’

‘The services set up to help have failed. The Mental Health Trust should be exposed for failure to my mum. They fail to let me know if they are seeing mum (they say it’s confidentiality) & just post scraps of paper through her door to say they have missed her but will come back next week.’

‘Social services have failed. I have power of attorney - my mum has lacked capacity for 2 years - but they say she couldn’t go in a home because she says she doesn’t want to go’ ‘The only support available to me as a parent of a child with autism/ADHD is only available on a day I work & I’m still waiting, after nearly a year, to have an appointment with Alder Hey’s ADHD nurse.’

‘I am slowly drowning in debt. Feeling worn out, but nothing is available outside office hours so, to get help, I would have to give up work, which is the only ‘me’ time I have & I’m the main breadwinner so it’s not an option.’

‘My mum was offered a service, but I was expected to take her, but I work so she couldn’t go’ ‘My mental health service offers no support other than an appointment twice a year, regardless of repeated requests for help.’

‘We do now have paid carers coming in twice a day, but they can’t do everything necessary in the short time they’re with her’

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One group of parents identified that there was a lack of information & support for their children that would help them understand the mental health issues experienced by the mother Polish women reported issues accessing a GP as they were not provided translation support. One reported that she was told if she did not like the help available, she should go back to Poland.

3.3 The Impact of Caring Women & girls were asked to rate the impact of caring &/or parenting on the quality of their life, in various areas, as having no impact, some impact or significant impact:

Impact of Caring - Significant Impact Time for self 41% (23) Relationships 34% (19) Sleep 32% (18) Finance 32% (18) Choice & Control 30% (17) Emotional Wellbeing 30% (17) Education/Employment 29% (16) Physical Health 21% (12) 0%

10%

20%

30%

40%

50%

Questionnaire Responses (56)

Lack of time for themselves & ability to maintain relationships was stated as a significant impact by the most women & girls. For young carers, the ability to maintain relationships was stated as being the most significant impact.

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Impact of Caring - Some Impact Choice & Control 61% (34) Physical Health 61% (34) Emotional Wellbeing 55% (31) Education/Employment 54% (30) Sleep 50% (28) Time for self 48% (27) Relationships 45% (25) Finance 45% (25) 0% 10% 20% 30% 40% 50% 60% 70%

Questionnaire Responses (56)

Young carers were much more likely to rate the impact on various areas of life as being ‘some’ impact, rather than ‘significant’, despite carrying out more caring tasks than some of the other groups. However, this may be due to the fact that they have no other experience/baseline to compare the impact to.

A more accurate picture of the impact of caring & parenting on women & girls’ lives can perhaps be gained by putting these 2 sets of figures together, showing that the vast majority of women feel the impact in all areas of their life:

Impact of Caring 95% 90% 85% 80% 75% 70%

Discussion & responses on the impact of caring & parenting yielded some of the richest data during this work:

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‘Caring can make planning things difficult - even planning to go to bed early, as I frequently end up having to do things for my sister in the late evenings.’

‘I don’t look after myself. My own health is getting worse. I have been diagnosed with diabetes & depression.’

‘Sleeplessness, anxiety, guilt, not wanting to be away from home, losing out on opportunities’ ‘Lack of control over own life, self-neglect, exhaustion, weight gain/loss, sleep deprivation, isolation’ ‘As it is all family who are looking after the person at the moment, it is causing the family to divide & argue & fall out. It can be very disruptive, causing stress & emotions to erupt & the family to fall apart.’

‘I felt like an unofficial carer for my mum during my primary school years - she was anxious, depressed & medicated & I felt responsible for keeping everything ‘ok’ for her - not bothering her - not causing trouble.

Being good. It’s stayed with me for the rest of my life & created certain patterns that haven’t always been positive.’

‘Caring for mum had got a lot easier with Barnardo’s support but teenage moods & hormones had me up & down in my own energy. It was hard to care for someone when I wasn’t caring about myself any more. I went on to leave school early & even though I completed years at college still didn’t feel good enough. Ended up in an abusive relationship. My relationship with my mum broke down. I learned after I got out of the relationship that I didn’t have a good relationship with myself. It got worse coz I was attacked & left badly injured. I finally learned I needed to be my own carer. I read, I Googled, I got as much information from everywhere & learned how to help myself. Then I could help others.’

‘It leaves me drained & I’m always worried’ ‘It makes me more mature, so I feel more optimistic about my future & I get good levels in school’

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‘With 3 children & 8 year gap, I had baby number 4. I was delighted.

Then after the birth I had lots of physical difficulties, quickly followed by depression. My life changed again. My daughter became a young carer.

The next 4 years were very hard & a bit dark but with 1 fab social worker we began to get support & my family’s life back on track. Life is up & down - we have to push through.’

‘I do worry about what might happen if I move out of the house - I might have moved out some years ago, or even left the city, if it wasn’t for the needs of my sister & previously my mother’ ‘As a parent of twin boys, life is a lot of fun but, at times, it can be extremely difficult. My husband’s job means he is not home as often… I am very optimistic about the future. However, when I am unable to juggle all the demands of the boys & work, life can seem very daunting & overwhelming. Many of my worries are associated with my beliefs about not being able to cope with all the demands & not wanting to fail or let anyone down.’

3.4 Feelings about Caring & Parenting Caring

Word-Cloud of Workshop Responses

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Responsibility & Feeling Responsible ‘As a young girl, having a mum with depression was something I didn’t understand. She was in bed or asleep on the couch most of the time & would get very angry or upset over little things. I felt it was mine & my sisters’ fault & that we were very naughty. I was blessed to have a sister who understood. But we both wanted to understand our mum & help her to be happy.’

‘Felt very anxious as a young child - there was a constant tension at home & I felt responsible for trying to intervene to stop my sister upsetting my mother’ ‘Felt responsible for my boyfriend’s happiness. Worried if I left him he wouldn’t cope & I wouldn’t have alternative to increasingly difficult responsibilities at home.’

‘Keeping the peace at home. Mum going through menopause & lost her dad. Felt responsible for keeping her happy & keeping the mood in the household ‘positive’.’

‘Anxious to not add to the worries at home. My sister was very troubled & tempestuous so I felt responsible for not adding to the stress - be good, be successful at school, get sensible job.’

‘Felt responsible for looking after the whole family when my mum became ill & died very unexpectedly when I was 30. I already had problems with chronic anxiety, depression & panic attacks but still was looked to as ‘responsible adult’.’

Anxiety & Worry ‘It’s always a worry, but my mum then feels bad that I worry, so I’m being positive but not sure this is how I really feel’ ‘I feel anxiety & helplessness’ ‘I worry about my husband (65). Will he develop dementia like his mum?’

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Resentment, Frustration & Anger ‘Felt I couldn’t leave home - what would my mum do left alone with my sister & father. Felt anxious & frustrated - low in confidence.’

‘Felt frustrated & resentful that I’d missed out on university - loss of confidence - stressed at home but couldn’t leave’ ‘Felt somewhat resentful that life seemed to be always putting me on the back burner but I love my girl & it was more important to support her.’

‘Frustration. Who am I?’ ‘Why am I not taken seriously just because I’m not a professional?’

‘Caring should NOT just be seen as a female role. Overwhelmingly it is currently.’

‘Anger. Unpaid, untrained, informal ‘family’ carers save the Exchequer £120 billion/year. There are estimated to be 5 million of us & the number is rising. 1.5 million people care for someone with a mental health ‘diagnosis’. This contribution should be properly recognised.’

Lack of Identity ‘Who am I now & what do I want after putting my own needs second?

Having to adapt to life without caring.’

‘What is my identity? What do I have to offer if I’m not a carer? How do I find value if not providing care?’

‘What now? My identity has involved being a carer for most of my life. I find it hard to formulate my identity now I am no longer a carer.’

‘Caring’s become a habit. I recognise the state & respond positively.

Can I say ‘No’? - ever?’

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Grief, Guilt & Loss ‘Guilty. Feel I must do this - but don’t want to.’

‘I felt guilty when I left home’ ‘Caring for my mum - very glad that I was able to do it but also grieved for the mum I could see I was losing’ ‘Caring for my brother - always happy & willing to do it but very sad at the waste & loss of potential for him which persists to this day’ ‘I feel that in many ways I have wasted my life, my potential. However, I am using all the bad decisions & experiences to try to improve things for my successors.’

Positive Feelings ‘As a young carer, I felt like I had to look after my siblings… I also felt proud that I had kept them safe & well & out of care.’

‘Positive idea of self when caring - feel like I am contributing.’

‘Exciting. Brings happiness, feelings of accomplishment, strengthens relationships.’

Parenting

Word-Cloud of Workshop Responses

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‘Becoming a parent has been the most amazing experience in the world!’

‘I feel useless’ ‘Would not swap it for the world’ ‘I feel lonely’ ‘Feel positive about the enjoyment of having young children but some degree of anxiety about providing financially for them for years to come’ ‘Love, sorrow, guilt, resentment, worry, inadequacy, satisfaction’ ‘Just wanting to get it ‘right’ but knowing you can’t - needing support on many levels’ ‘Challenging, rewarding, overwhelming at times’ ‘Not sure I’d choose to be a parent again - actually I wouldn’t’ ‘Feelings as a new parent first time - total horror. I’d never even held a baby before!! I remember asking in the maternity ward if anyone else was in that position & several were.’

‘Expected as a parent to always feel love, to always nurture & to always put child first. Feelings of guilt when you don’t conform to the above.’

‘Feel some resentment that I am at an age where I should be carefree but am responsible for providing material & emotional care for family’ ‘I spent a decade co-parenting my (then) partner’s children & to some extent caring for my partner who was often very negative, angry & once or twice - violent. It was a difficult time emotionally but rewarding in some ways although I feel a sense of loss that the children (now adults) are no longer in my life.’

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Feelings about the Future

Feelings about the Future Optimistic 30% (17) Pessimistic 20% (11)

25%

30%

12% 2% 11%

Both Optimistic & Pessimistic 11% (6) Neither Optimistic nor Pessimistic 2% (1)

20%

Don't Know 12% (7)

Questionnaire Responses (56)

Just over a quarter of women & girls could not answer the question on whether they felt optimistic or pessimistic for the future. Overall, of those who could answer the question, more women & girls felt optimistic. However, carers & parent carers were more likely to say they felt pessimistic than parents, with almost half of those women feeling pessimistic. Considerably less people aged 45 years & over felt optimistic about the future - Only 1 person in this age group felt optimistic (10%), compared with 100% of girls under 12, 50% of 13-25 year-olds, & 33% of 26-45 year-olds.

‘I’m feeling optimistic - The GP has been excellent with my son & he now has the right medication to support his condition.’

‘Pessimistic, as whenever my mum is angry she curses me & I feel like dying… Tired of life.’

‘I am in the process of setting up my own social enterprise - Cloud 8 - to give care to the community. I am optimistic because my own mum has been inspired by my healing & has done so herself. Together we want to inspire others.’

‘Feel pessimistic as regards the health issue she has - is not going to improve’

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3.5 Support that Women & Girls Want

Support that Women Want Support to improve health/wellbeing…

Information on support/services 36%…

Info on health condition of cared-for…

Opportunity to talk 30% (17) Advice on Education/Employment…

Advice on Benefits/Finance 27% (15) Support to spend time on self 23% (13) Advice on how to juggle roles 13% (7) Support to reduce Caring 11% (6) 0%

10%

20%

30%

40%

50%

60%

Questionnaire Responses (56)

Overall, support to improve their own health & wellbeing, information on sources of support & services, & information about the condition of the person they cared for was wanted by the highest number of women & girls. The support wanted by the highest number of carers was advice on finances & benefits (54%) & support to improve their own health & wellbeing (46%). Support to spend time on themselves was mentioned by the highest number of parents (36%) & the highest number of young & young adult carers (67%). Parent carers most wanted information on the health condition of the person they cared for (83%) & to improve their own health & wellbeing (67%).

In terms of variation across the different age-groups, fewer women over the age of 45 wanted advice on education & training. A greater number of women in this agegroup, however, wanted advice on finance & benefits, information on the health condition of the person they cared for, opportunity to talk, & information on services.

Women from the Bengali community found this question particularly difficult to answer as they felt that if they needed to ask for support they would have to go to family or extended family. Women from all of the Black, Minority Ethnic & Refugee groups we spoke to were less likely to say they wanted a health or social care service & instead wanted after-school activities for children, activities for older adults,

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exercise sessions, cooking on a budget, confidence-building, & support to integrate with other communities.

‘I would like support & understanding to manage my own health issues (Bipolar & ME) to prevent severe relapse that would stop me being able to care.

‘Schools & teachers having more knowledge, time off, adult services having a better understanding of young carers needs’ ‘Support for my brother - he needs help because of my dad being in prison, but I don’t want to worry my mum as I care for her’ ‘Evening carers groups & services, support to look after children when dealing with mental health issues, understanding & support for siblings, support to chase up maintenance payments from ex-partners’

During the Workshop session, women were asked - What would help? What do carers & parents need? Women spoke about shared experiences & peer support, groups specifically for carers & parents, confidence-building, awareness-raising for professionals, easily accessible information & services, choice, & supporting solutions that work for the whole family ‘Finding people who share your experience so that you’re not isolated.

Mental health issues are very stigmatised. Finding people - groups or individuals - who can support you.’

‘Doing it for yourself inspires confidence e.g. setting up of Mad Women.

What people can do in relationship with others is remarkable. But preexisting groups are useful for those who don’t yet have the personal resources, when you need someone to walk alongside you.’

‘Being able to find out about things easily is important’ ‘Need to look at the whole family picture - the needs for the cared & cared for can be inseparable’

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‘Don’t just ‘signpost’ - leaflets can just go in the bin - You need someone to walk alongside you.’

Section 4: Discussion & Conclusion

The topic for the What Women Want group’s latest Task & Finish Group developed out of previous work - on Domestic Abuse & Mental Health, & the Impact of Austerity on Women’s Wellbeing - where issues relating to caring & parenting were integral to the experiences women shared. In developing the questionnaire & focus group questions, through discussions with Jane Weller (Commissioning & Contracts Manager, Liverpool City Council), we ensured that the questions aligned with Liverpool’s Self-Directed Carer Assessment to allow correlation of data.

It is acknowledged that our findings came from women & girls who were able either to access the questionnaire & fill it in or attend a focus group or workshop, all of which required carers & parents to find the time to do this. Over the course of the Task & Finish Group work, responses were received from 121 women & girls, through 56 individual questionnaire responses, 43 focus group participants & 22 workshop participants. A wide range of parents & carers were reached, with 19% of respondents being Young & Young Adult Carers, 40% parents (parents 35%, parent carers 5%), & 41% carers (carers 21%, sandwich carers 20%). A representative sample, however, was not achieved. We did not, in general, reach older carers, perhaps due to the methods of participation & limited amounts of time that carers have. The Task & Finish Group also recognise that, for both parents & carers, participation could be better facilitated by including the person being cared for in any activities, as lack of alternative care or the cost of this can be a barrier to participation.

The vast array of duties carried out by women & girls as part of their caring role is notable, as is the number of hours spent fulfilling this role, with 60% of participants providing over 50 hours of care per week. 76% of women & girls in our study were providing more than 20 hours of care per week. This is considerably higher than Liverpool City Council figures at 48%, but is perhaps accounted for by the fact that

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our piece of work included both parents & carers. Half of all women & girls reported that they had only 1-12 hours to themselves in any week. Although just over half of the respondents said they received the majority of their support from family & friends, this leaves just under half of all women & girls who either did not feel able to turn to family & friends for support or did not have these relationships to rely on. The impact on all areas of life for both parents & carers is substantial, particularly in having time for themselves, having choice & control over their own lives, in opportunities to participate in education & employment, financial worries, maintaining relationships & in overall physical & emotional wellbeing.

Some differences were noted between the experiences of parents, carers, parent carers, & young & young adult carers. Young & young adult carers reported carrying out the largest variety of tasks for those they cared for. Hours spent caring were higher amongst parents. Parents, Young & Young Adult Carers & women from Black, Minority Ethnic & Refugee communities were most likely to report having no time at all to themselves. Carers were more likely to be combining caring with fulltime paid work. The elements of support wanted by the most Carers were advice on finance & benefits & support to improve their own health & wellbeing. Parents & Young & Young Adult Carers most wanted support to spend more time on themselves. The priority for Parent Carers was information on the health condition of their child. There was a big difference between Parents & Carers when asked whether they had wanted the caring role or whether it was expected of them - 40% of Parents said they had wanted to be a parent, whereas only 23% of Carers said they had wanted the role, with Young & Young Adult Carers being the most likely to describe their role as expected of them. This is, perhaps, reflected in the higher number of Carers who felt pessimistic about the future.

The main findings from this work highlight the enormous toll that caring takes on the lives of carers & parents across their life-course in terms of physical & emotional wellbeing, as well as how closely the wellbeing of carers & parents is tied to adequate support & good quality of life achieved for the person that they care for.

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What Would Good Support Look Like?

Carers

Parents  Support outside of

 Being recognised as a carer  Somewhere to express your feelings  Adult & Children’s services working together  Support to improve own health/wellbeing  Information on support & services  Advice on finance, debt & benefits  Support for own mental health  Evening carers’ groups & services  Peer support  Whole family approach  Respect for the caring role  Information on the person you care for - no hiding behind confidentiality  Face-to-face advice & signposting - not just leaflets

‘office’ hours  Support to spend time on themselves  Information about the person you care for  Support to improve own health/wellbeing  Information on support & services  Whole family approach  Support to look after children when struggling with own mental health

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Section 5: Recommendations

1. In line with Liverpool’s Early Help offer, Commissioners & providers across all services to embed a child & family-centred pathway that identifies routes in & out of services & ensures a seamless experience for families 2. Commissioners & providers to support workforce development across adult & children’s services to further embed Whole Family Approaches into practice, supporting their role in relation to the Care Act & Children & Families Act 3. Improve access to assessment, information & advice for carers & parents by raising awareness of available sources of support across all service providers, ensuring that there is no wrong door 4. GPs to ensure uptake of regular carer health checks & provide support for parents & carers to improve their own health & wellbeing 5. Health & social care providers to ensure parents & carers have adequate information on & involvement in the health & care planning of those they care for 6. Provide signposting to sources of support for parents & carers on finances & benefits, education & employment opportunities & how to make time for themselves 7. Commissioners across Adult & Children’s services to encourage parent & carer-friendly workplace policies & practice amongst suppliers via their procurement policies 8. Commissioners & providers across Adult & Children’s services to further embed the Liverpool Perinatal Pathway into practice 9. Commissioners & providers across Adult & Children’s services to review effective ways of engaging & involving parents & carers to ensure appropriate commissioning & support is in place 10. Commissioners & providers across Adult & Children’s services to recognise that the needs of parents/carers & care recipients are interconnected & promote solutions that work for the whole family 11. Commissioners & providers across Adult & Children’s services to be aware of potential isolation in parents & carers, recognise the impact of relationships in

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building resilience & promote activities that build on this, including peer support 12. Employers to implement carer-friendly policy & practices in the workplace 13. Employers to raise awareness in the workplace to encourage carers to identify themselves & signpost them to information & support 14. Recognition from commissioners, providers & employers that the support needs of carers & parents do not end when the caring role comes to an end.

15. Commissioners & providers across Adult & Children’s services to review existing information-sharing protocols to ensure that the needs of carers & parents for information are met through balancing safeguards with common sense.

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‘We’re the Foundation on which everything is Built’ - A Group Poem from Participants at the Mersey Care International Women’s Day Conference, 6th March 2015 1 I don’t want to be the foundation on which everything is built - give the title to someone else.

I need hope. I am there for others - who is there for me? I’m a carer, but still a person full of fears & many tears (if he could spend a day as me…)

My home is built of straw - the big bad wolf full of puff. I am standing on shifting sands.

My responsibilities are daunting; how do I fit it all in? Scattered fragments of waking, managing, falling asleep, so much struggle, I can’t think. How do we sleep? When do we sleep?

The show wouldn’t go on without those of us backstage. I enjoy the journey & the stories (but who listens to mine?) The gift I give is time. I care for my friend because he’s fallen out with everyone else & I won’t fall out with him.

I am strong within the struggle because of love. I am strong for others to hold on to. I am one in a million. I’ve been given the privilege to be able to care.

Caring is wonderful, scary, better too when we look after ourselves.

2 Families come in all different shapes. If only I had what the young carers have - the wonderful help (I feel responsible for my children’s mental state), my life as a child was so hard.

The older I get, the better I get. Life is for sharing - be happy, be free. It’s clear my family love me, they think I’m amazing. I’m lucky & proud.

I am inspired by the strong, independent women who have gone before me. I get better with age. I speak up. I carry on. I listen to myself. I realise I have joy in my life.

We are unique, we are marvellous. I am wife, I am mother, I am friend, I am lover, I am carer, I am daughter & sister.

Women, not only at the centre, but North, South, East & West.

pauline.rowe@merseycare.nhs.uk 27 March 2015

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Section 6: References Bauer, A et al (2014) The Costs of Perinatal Mental Health Problems. Centre for Mental Health/LSE/PSSRU http://www.centreformentalhealth.org.uk/costs-ofperinatal-mh-problems Ben-Galim, D & Silim, A (2013) The Sandwich Generation: Older Women Balancing Work & Care. Institute for Public Policy Research http://www.ippr.org/publications/the-sandwich-generation-older-women-balancingwork-and-care Beresford B, Rabiee P & Sloper P (2007) Outcomes for Parents with Disabled Children. SPRU, University of York http://php.york.ac.uk/inst/spru/pubs/282/ Busby, N (2014) Unpaid Care, Paid Work & Austerity: A Research Note feminists@law 4/1 https://pure.strath.ac.uk/portal/files/41463552/Busby_FL2014_unpaid_care_paid_wo rk_austerity_research_note.pdf Cabinet Office (2008) Families in Britain: An Evidence Paper. London: HMSO http://dera.ioe.ac.uk/9502/ Cabinet Office (2009) New Opportunities: Fair Chances for the Future. London: HMSO https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/22853 2/7533.pdf Campbell-Barr, V & Garnham, A (2010) Childcare: A Review of What Parents Want Equality & Human Rights Commission Research Report 66. University of Plymouth/Daycare Trust http://www.equalityhumanrights.com/sites/default/files/documents/research/childcare _what_parents_want.pdf Carers UK (2007) Out of Pocket http://www.carersuk.org/forprofessionals/policy/policy-library?search=policy_documents_all&task=search Carers UK (2014) Carers Manifesto http://www.carersuk.org/forprofessionals/policy/policy-library?search=policy_documents_all&task=search

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Carers UK (2014) Evidence: Commission on Older Women http://www.carersuk.org/for-professionals/policy/policylibrary?search=policy_documents_all&task=search Carers UK (2014) Policy Briefing: Facts about Carers http://www.carersuk.org/forprofessionals/policy/policy-library?search=policy_documents_all&task=search Carers UK (2015) Alone & Caring: Isolation, Loneliness & the Impact of Caring on Relationships http://www.carersuk.org/for-professionals/policy/policylibrary?search=policy_documents_all&task=search Carers UK (2014) Caring & Family Finances Inquiry http://www.carersuk.org/forprofessionals/policy/policy-library?search=policy_documents_all&task=search Carers UK (2014) Quality of Care & Carers: How Quality affects Families, Employers & the Economy http://www.carersuk.org/for-professionals/policy/policylibrary?search=policy_documents_all&task=search Carers UK (2014) Carers at Breaking Point http://www.carersuk.org/forprofessionals/policy/policy-library?search=policy_documents_all&task=search Carers UK (2014) State of Caring 2014 http://www.carersuk.org/forprofessionals/policy/policy-library?search=policy_documents_all&task=search Clarke, H & Hughes, N (2010) Family Minded Policy & Whole Family Practice: Developing A Whole Family Research Framework. Social Policy & Society 9/4 pp 527 – 531 http://pureoai.bham.ac.uk/ws/files/17448625/ClarkeS1474746410000242a.pdf Contact a Family (2014) Forgotten Families: The Impact of Isolation on Families with Disabled Children across the UK http://www.cafamily.org.uk/media/381636/forgotten_isolation_report.pdf Department for Education (2003) Every Child Matters http://webarchive.nationalarchives.gov.uk/20130401151715/http://www.education.go v.uk/publications/eOrderingDownload/CM5860.pdf Dobson, B & Middleton, S (1998) Paying to Care: The Costs of Childhood Disability.

Joseph Rowntree Foundation http://www.jrf.org.uk/sites/files/jrf/scr748.pdf

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Family & Childcare Trust (2015) Annual Childcare Costs Survey http://www.fct.bigmallet.co.uk/sites/default/files/files/Childcare_cost_survey_2015_Fi nal.pdf#overlay-context=annual-childcare-costs-surveys Family Support Worker Steering Group (2012) The Family Support Worker: Community Mental Health Teams & Children’s Centres Project, Liverpool. Mersey Care NHS Trust/Liverpool Primary Care Trust/SureStart Fawcett Society (2012) The Impact of Austerity on Women http://www.fawcettsociety.org.uk/wp-content/uploads/2013/02/The-Impact-ofAusterity-on-Women-19th-March-2012.pdf Foster, R & Fender, V (2013) Valuing Informal Adult Care in the UK. Office of National Statistics: Work & Pensions http://www.ons.gov.uk/ons/dcp171766_315820.pdf Grandparents Plus (2013) Policy Briefing 4: Grandparents & Childcare http://www.grandparentsplus.org.uk/wp-content/uploads/2013/05/Briefing-paper-ongrandparental-childcare.pdf The Guardian (2012) Women Paying the Price for Osborne’s Austerity Package. 30 March 2012 http://www.theguardian.com/lifeandstyle/2012/mar/30/women-payingprice-osborne-austerity The Guardian (2012) Recession Hits Middle-Aged Women Worst. 8 July 2012 http://www.theguardian.com/society/2012/jul/08/recession-hits-middle-aged-womenhardest Herklots, H (2014) ‘Caring Alone’, Alone in the Crowd: Loneliness & Diversity.

Campaign to End Loneliness/Calouste Gulbenkian Foundation http://www.gulbenkian.org.uk/publications/publications/112-Alone-in-the-crowd-loneliness-and-diversity.html Holt-Lunstad J, Smith TB & Layton JB (2010) Social Relationships & Mortality Risk: A Meta-Analytic Review. PLoS Med July 2010 7/7 http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1000316

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Home Office (1998) Supporting Families http://webarchive.nationalarchives.gov.uk/+/http:/www.nationalarchives.gov.uk/ERO Records/HO/421/2/P2/ACU/SUPPFAM.HTM Hooper, CA et al (2007) Living with Hardship 24/7: The Diverse Experiences of Families in Poverty in England. Frank Buttle Trust/University of York/NSPCC http://www.york.ac.uk/admin/presspr/features/hardship.pdf Institute for Fiscal Studies (2012) The Impact of Austerity Measures on Households with Children. Institute for Fiscal Studies/Family & Parenting Institute http://www.ifs.org.uk/conferences/browne_scotcare_presentation.pdf Katz, I, La Placa, V & Hunter, S (2007) Barriers to Inclusion & Successful Engagement of Parents in Mainstream Services. Joseph Rowntree Foundation http://www.jrf.org.uk/sites/files/jrf/barriers-inclusion-parents.pdf Langerman, C & Worall, E (2005) Ordinary Lives: Disabled Children & Their Families. London: New Philanthropy Capital http://www.enil.eu/wpcontent/uploads/2012/07/Ordinary-Lives-Disabled-children-and-their-families.pdf Liverpool City Council (2012) Adults & Older People: Mental Health & Wellbeing Liverpool City Council (2012) Population Groups: Young Carers http://liverpool.gov.uk/media/688873/populationgroupscarersyoungpeople.pdf Liverpool City Council: Think Family Web Pages http://liverpool.gov.uk/council/strategies-plans-and-policies/children-andfamilies/think-family/ Liverpool City Council: Early Help Strategy Web Pages http://liverpool.gov.uk/council/strategies-plans-and-policies/children-andfamilies/early-help-strategy/ Liverpool Family Support Worker Project Steering Group (2012) The Family Support Worker: Community Mental Health Teams & Children’s Centres Project April 2010 September 2011. Mersey Care NHS Trust Liverpool Public Health Observatory (2012) Children & Young People’s Emotional Health & Wellbeing Needs Assessment: Merseyside

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Morris, K et al (2008) Think Family: A Literature Review of Whole Family Approaches. London: Cabinet Office/HMSO Murray, L & Barnes, M (2010) Have Families Been Rethought? Ethic of Care, Family & ‘Whole Family Approaches’. Social Policy & Society 9/4 pp 533 - 544 http://eprints.brighton.ac.uk/8178/ NHS Information Centre for Health & Social Care (2010) Survey of Carers in Households 2009/10 http://www.hscic.gov.uk/pubs/carersurvey0910 Office for National Statistics (2011) Census http://www.ons.gov.uk/ons/guidemethod/census/2011/census-data/index.html Office for National Statistics (2013) Unpaid Care in England & Wales http://www.ons.gov.uk/ons/guide-method/census/2011/carers-week/index.html Pickard, L (2008) Informal Care for Older People Provided by their Adult Children: Projections of Supply & Demand to 2041 in England http://www.lse.ac.uk/LSEHealthAndSocialCare/MAP2030/docs/InfCare_Pickardetal_ 2009.pdf Resolution Foundation (2012) The Price of Motherhood: Women & Part-Time Work http://www.resolutionfoundation.org/publications/price-motherhood-women-part-timework/ Rogers, S (2012) Childcare Costs: How the UK Compares with the World. The Guardian: 21 May 2012 http://www.theguardian.com/news/datablog/2012/may/21/child-care-costs-comparedbritain Roscoe, H, Constant, H & Ewart-Boyle, S (2012) Think Child, Think Parent, Think Family: Final Evaluation Report. SCIE. http://socialwelfare.bl.uk/subjectareas/services-client-groups/adults-mental-health/scie/think121.aspx Rutter, J & Evans, B (2012) Improving our Understanding of Informal Childcare in the UK. Daycare Trust. http://www.familyandchildcaretrust.org/research Shah, AJ, Wadoo, O & Latoo, J (2010) Psychological Distress in Carers of People with Mental Disorders. British Journal of Medical Practitioners 3/3 http://www.bjmp.org/content/psychological-distress-carers-people-mental-disorders

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Social Exclusion Taskforce (2008) Think Family: Improving the Life Chances of Families at Risk. Cabinet Office http://webarchive.nationalarchives.gov.uk/+/http:/www.cabinetoffice.gov.uk/media/ca binetoffice/social_exclusion_task_force/assets/think_families/think_family_life Smeaton D, Vegeris S & Sahin-Dikmen M (2009) Older Workers: Employment Preferences, Barriers & Solutions. London: Equality & Human Rights Commission http://www.equalityhumanrights.com/sites/default/files/documents/research/older_wo rkers_employment_preferences_barriers_and_solutions_v2.pdf TNS-BMRB (2010) Parental Opinion Survey 2010. Department for Education Research Report DFE-RR061 https://www.gov.uk/government/publications/parentalopinion-survey-2010 University College London, ILC-UK (2015) The Emotional Wellbeing of Older Carers http://www.ilcuk.org.uk/index.php/publications/publication_details/the_emotional_well being_of_older_carers Wardale, L (2007) Keeping the Family in Mind Resource Pack http://www.barnardos.org.uk/resources/research_and_publications/keeping-thefamily-in-mind-resource-pack-2nd-edition/publication-view.jsp?pid=PUB-1600 Ward, F (2014) The ‘Big P’ Focus Groups: Summary of Findings. Barnardo’s Training & Consultancy Working Families/Bright Horizons (2015) Modern Families Index 2015 http://www.workingfamilies.org.uk/wp-content/uploads/2015/01/Modern-FamilyIndex-full-report-FINAL.pdf

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Appendix 1: Task & Finish Group Members

Afrah Qassim

Community Development Worker

Andy Kerr

Liverpool Clinical Commissioning Group

Anne Simms

PSS Wellbeing Centres

Carol Bernard

Mersey Care NHS Trust

Claire Stevens

Liverpool Mental Health Consortium

Diane Clayton

Liverpool Families Programme, Liverpool City Council

Diane Foulston

Barnardo’s Volunteer

Diane Middleman

Independent

Jane Weller

Liverpool City Council

Kashka Georgeson

Mersey Care NHS Trust

Louise Byrne

Schools Family Support Service

Louise Wardale

Barnardo’s

Margaret Brown

Mersey Care NHS Trust

Mary Moir

Healthwatch Information

Maureen Thomas

Independent

Sarah Butler-Boycott

Liverpool Mental Health Consortium

Seamus Walsh

PSS Family Impact Project

Sue Neely

Public Health, Liverpool City Council

Val Walsh

Liverpool Women’s Network

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Appendix 2: Focus Group & Questionnaire Questions

Women’s Experiences of Parenting & Caring across the Life-Course Questionnaire (to be completed by women only please!)

For the purposes of this questionnaire, the following definitions will be used:

Parent: A parent or guardian looking after a child who is under 18 Parent Carer: A parent or guardian who is providing more support than other parents might need to because their child is ill or disabled Carer: Someone who provides unpaid care to a spouse, partner, parent, child, sibling, other relative or friend who needs support due to their illness or disability

Section 1: Equality & Diversity Monitoring Answering this section is optional, but responding to it will help us to get a clearer picture of parenting & caring across a variety of communities & life-stages 1. Are you: In a Civil Partnership☐

Cohabiting☐

Divorced/Separated☐

Single☐

Other☐

Prefer not to Say☐

Celibate☐

Heterosexual☐

Widowed☐

Married☐

2. Sexual Orientation: Asexual☐

Bisexual☐

Lesbian☐

Other☐

Prefer not to Say☐ 3. Religion: Buddhist☐ Other☐

Christian☐

Hindu☐

Jewish☐

Muslim☐

None☐

Sikh☐

Prefer not to Say☐

4. Ethnicity: Asian/Asian British:

Bangladeshi☐

Black/Black British:

African☐

Indian☐

Caribbean☐

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Pakistani☐ Other☐

Other☐

Chinese☐ Mixed Ethnicity:

Asian & White☐

Black African & White☐

Black Caribbean & White☐ White:

White British☐

White Irish☐

Gypsy/Roma☐ Other Ethnic Group☐

Other☐ Traveller of Irish Heritage☐

Any Other White Background☐

Prefer not to Say☐

5. Do you consider yourself to have a long-term illness, disability or health problem?

Yes☐

No☐

Don’t know☐

Prefer not to say☐

Section 2: Your Parenting & Caring Role For the following questions, please tick all that apply to you

1. Are you a: Carer☐

Parent☐

Parent Carer☐

2. What is your age?

3. What is your relationship to the person/people you care for?

Spouse/Partner☐ Grandchild☐

Parent/Parent-in-Law☐

Another Relative☐

Grandparent☐

Friend/Neighbour☐

Child☐

Other☐

4. In addition to your caring/parenting role, which of these applies to you?

Looking after Home/Family Full-Time☐ Paid Work (Part-Time)☐ Voluntary☐

Retired☐

Not in Work☐ Self-Employed☐

Other☐

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Paid Work (Full-Time)☐ Student☐

5.

What tasks do you carry out as part of your caring role?

Accompanying to Appointments☐

Assisting with Medication

☐ ☐

Domestic/Practical Help

☐

Ensuring Safety or Wellbeing

Emotional Support

☐

Managing Paperwork or Finances ☐

Parenting

☐

Personal Care

☐

Physical Help

☐

Prompting & Motivating

☐

Other

6. Did you take on this caring/parenting role because you wanted to or because it was expected of you? Please explain

7. On average, how many hours of care do you provide over the course of a week?

1-10 hours☐

11-20 hours☐

20-30 hours☐

40-50 hours☐

50+ hours☐

24 hours a day/7 days a week☐

8. On average, how much time do you have just for yourself over the course of a week?

1-12 hours☐

1 day☐

6 days☐

7 days☐

2 days☐

3 days☐

Other

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4 days☐

5 days☐

9. How do you look after yourself? (e.g. making time for hobbies, socialising, finding support)

10. Where do you get support from for your caring/parenting role?

Health services☐ Social services☐ Adult Mental Health Services☐ Family☐

Friends☐

Voluntary organisation/Charity☐

Child & Adolescent Mental Health Service☐

Other☐

11. What kind of support is this?

12. What kind of support would you like to receive that you don’t already?

Advice on finding education/training/employment☐ Advice on juggling current education/training/employment with caring/parenting☐ Advice on benefits or managing finances☐ Information about the health condition of the person I care for☐ Information about services & support available☐ Support to reduce the number of hours I care for☐ Support to spend time doing things I value & enjoy☐ Support to improve my health & wellbeing☐

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Opportunity to talk to someone to discuss my feelings�

Something else?

13. To what extent does caring/parenting impact on the following aspects of your life?

No Impact

Some Impact

Significant Impact

Ability to have a good night’s sleep Ability to have time to yourself Ability to maintain relationships with friends & family Choice & control over daily life Emotional wellbeing & mental health Health & wellbeing Participation in education/training/ employment Your financial situation

14. In relation to your caring role, please tell us whether you feel optimistic or pessimistic about your future & why

15. Is there anything else you would like to tell us about the role or impact of parenting/caring in your life?

Thank you very much for your help with this!

Please return to: sarah@liverpoolmentalhealth.org

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Appendix 3: Local Organisations Providing Services to Carers & Parents Barnardo’s Action with Young Carers & Young Adult Carers 0151 708 7323

youngcarers.liverpool@barnardos.org.uk

BEAT - Talking Eating Disorders (for carers, parents & service users) 07974 796990

Careline (Social Care, including Carers Assessment) Adult: 0151 233 3800

Children’s: 0151 233 3700

Kinship Carers Liverpool (grandparents/family carers bringing up children due to parents’ drug/alcohol use) 0151 270 2108

Liverpool Early Help Directory http://fsd.liverpool.gov.uk/kb5/liverpool/fsd/home.page

Liverpool FYI Directory (For Your Information) (Info on Child & Adolescent Mental Health) 0151 702 0761

participation@mya.org.uk

Live Well Liverpool Directory

http://www.livewellliverpool.info/

Local Solutions Carers Centre 0151 705 2307

info@localsolutions.org.uk

Mary Seacole House Carers Service 0151 707 0319

www.liverpoolfyi.com

mo@maryseacolehouse.com

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Mersey Care Trust Carers Group 0151 250 5044

Lisa.gould@merseycare.nhs.uk

PSS Family Impact Project (Alcohol & Substance Misuse/Prisoners’ Families) 0151 702 5577

katie.owens@pss.org.uk

PSS PND (Post-Natal Depression) Service & LivPip (Perinatal Support) 0151 702 5555 http://www.psspeople.com/how-pss-can-help/look-after-my-health/as-a-new-orexpectant-parent

The Reader Organisation – Take A Break with A Book/Tiny Reads 0151 724 5000

siobhanmealey@thereader.org.uk

Neurosupport Carers Advocacy 0151 298 2999

emma@neurosupport.org.uk

Wellbeing Liverpool Directory

http://www.wellbeingliverpool.org.uk/

Young Addaction Breaking the Cycle (for Parents/Carers who use Drugs) 0151 706 9747

liverpool@addaction.org.uk

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Company: 802854 / Charity: 1148847

August 2015

151 Dale Street, Liverpool L2 2AH 0151 237 2688 hello@liverpoolmentalhealth.org www.liverpoolmentalhealth.org.uk @liverpoolmhc

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