Keeping thefamily in mind:a briefing on young carerswhose parents have mentalhealth problems

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‘One time the doctor

came to see my mum

at home. I opened the

door to him and tried to

tell him that my mum

wasn’t well. He told me

he wanted to speak to

an adult in the family.

There was only me and

my mum and she was

ill in bed upstairs. He

went to see her and

when he came back

down, he handed me all

her tablets and told me

not to let her have any

of them.’

Introduction

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It is difficult to measure thenumber of young carers whoseparents have mental healthproblems. In 1996, the Office forNational Statistics estimated thatbetween 19,000 and 51,000 youngcarers were living in England,Wales and Scotland, and smallerscale studies suggest that between6,000 and 17,000 of these childrenand young people may have beencaring for parents with mentalhealth problems.3 Other research

suggests that the real number ofyoung carers may be far higher. 4

The range of caring tasksundertaken by young carers varieswidely, but children who are caringfor a distressed parent are morelikely to provide emotional as wellas practical support than otheryoung carers. A young carer whoseparent has a mental healthproblem may be helping out witha range of everyday chores:cleaning the house, shopping,

cooking or looking after youngerbrothers and sisters. In addition,some young carers providesignificant emotional support and may take responsibility formaking sure their parent takesmedication or attendsappointments with professionals.The level of responsibility a youngperson takes on can changerapidly as their parent’s mentalhealth improves or deteriorates.

In the UK today, one in six adults is living with a mental health problem, most commonlyanxiety or depression.1 Many of these adults are also parents whose children are living athome, in fact mental health problems are more common in adults who have dependentchildren, and lone parents are three times more likely than other parents to experiencemental distress.2 The emotional wellbeing of parents can have a significant impact onchildren. In some families, parental distress can lead to children taking on responsibilities that would usually belong to adult family members: they become young carers.

1 Department of Health (1999) National Service Framework for Mental Health: Modern standards and service models, London, Department of Health.

2 Meltzer H, Gill B, Pettigrew N and Hinds K (1995) The Prevalence of Psychiatric Morbidity Amongst Adults Living in Private Households, POCS Surveys of PsychiatricMorbidity in Great Britain, Report 1, London,The Stationary Office.

3 Aldridge J and Becker S (2003) Children Caring for Parents With Mental Illness: Perspectives of young carers, parents and professionals, Bristol, Policy Press

4 Cawson et al (2000) Child Maltreatment in the UK: a study of the prevalence of child abuse and neglect, London, NSPCC.

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The impact of caring

Caring for a distressed parent can have significant consequences when the family is left tocope without any support.Young carers may lack self confidence, find it hard to make friends,or be bullied because of their family circumstances. For young carers whose parent has amental health problem, these factors are compounded by negative stereotypes of mentaldistress. A quarter of all young carers report missing school because of their parent’s supportneeds5 and over time, young carers are likely to have more restricted life choices than theirpeers.Young carers whose parents have mental health problems are three times more likelythan other children to experience mental health problems themselves.6

However, for many children andyoung people, taking on caringresponsibilities can also have a positive effect. Rather than achore, caring can be part of a lovingparent/child relationship, animportant and valued contributionto family life. Barnardo’s believes

that the families young carers arepart of can be positive, nurturingenvironments, and that parentswith mental health support needscan be excellent parents.

5 Dearden C and Becker S (2000) Growing Up Caring:Vulnerability and Transition to Adulthood – Young carers experience,Youth Work Press,York

6 Maltser H, Gatward R, Goodman R and Ford T (2000)The Mental Health of Children and Adolescents in Great Britain, ONS, London,The Stationary Office.

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We know that young carers needmuch more than support fortheir caring role; they needsupport for their whole familywhich goes beyond just the singleissue of parental mental distress.

Only 10% of adults with mentalhealth problems are in paid work,so many children whose parentshave mental health problems areliving in poverty.7 Mental distresscan place huge strains onrelationships and lead torelationship breakdown, whichhas a long term impact onchildren.The stigma associatedwith mental distress can leaveboth parents and childrenisolated, terrified of asking forhelp and fearful that their familieswill be broken up.

Barnardo’s works with hundreds ofyoung carers in our 12 specialistprojects across the UK, many ofwhom care for parents or familymembers with mental healthproblems. In 2003-2004, Barnardo’sprovided support to 1162 youngcarers and 320 families.We alsoprovide support for parents,including parents with mentalhealth support needs, through ournetwork of 117 parenting andfamily support projects.

Our specialist young carers’projects provide information,support and advice to children andyoung people caring for a parentor family member.We run one-to-one sessions and groups whereyoung carers can share theirexperiences and take comfort

from knowing that they aren’talone.We provide information andadvice that can help children andyoung people understand theirparent’s mental health problems,and help the family access thesupport it needs. Some projectsalso run leisure activities andgroups so that young carers canhave fun and build friendships.

Many of our projects work withthe whole family to make sure thatthey get the help that they needfrom other organisations inaddition to Barnardo’s.

Our work: keeping the family in mind

Barnardo’s purpose is to help the most vulnerable children and young people transformtheir lives and fulfil their potential.We believe that the best way to support young carers isto work with them as part of a family: keeping the family in mind.

7 Stickland H (2003) Disabled Parents and Employment. Background Paper for the MHT/DWP seminar on 24th November 2003

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CareFree runs and supports 12 young carers groups in theregion. As well as providingemotional and practical supportthese groups offer leisure andsocial activities to young carerswho might not be able to accessthem otherwise.They alsoprovide an important place foryoung carers to meet, shareexperiences and gain supportfrom their peer group.

The project conducts assessmentswhere the needs of the wholefamily are explored. CareFree

identifies which other servicesmay be helpful and will act as acoordinator for these.

CareFree provides information toyoung carers and their familiesand applies for grants to helpthem with essential householditems or to support youngpeople’s development. CareFreealso advocates on behalf of youngcarers and their families.

Further details about Barnardo’s CareFree service and our otheryoung carers’ projects can be found at www.barnardos.org.uk

CareFree Young Carers’ Project

CareFree was established in 1996 to offer a wide range of practical and emotional support to young carers inLeicester and Leicestershire. This includes giving youngcarers time to be free of caring responsibilities, helping thewhole family to get the support they need and providinginformation to young carers and their families.

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■ Adult mental health workersshould recognise the role thata young carer plays in theirfamily, and should take timeto inform and involve them.

■ Young carers whose parentshave mental health problemsshould be able to access goodquality age appropriateinformation about mentalhealth problems.

Barnardo’s calls on the UK Governments to give youngcarers a right to information,through the reform of theMental Health Act 1983, andthe Mental Health (NorthernIreland) Order 1986 and byamending the Mental Health(Care and Treatment)(Scotland) Act 2003.

■ Young carers whose parentshave mental health problemsshould have access to supportthat values their family, whilegiving them a space to talkopenly and get the help thatthey need.

Guidance to adult mentalhealth professionals and otherprofessionals undertakingcarers assessments shouldrequire that all young carershave their needs assessed,irrespective of whether theyare the primary carer.Assessments should have a clear focus on suppor tneeds arising from theprovision of emotional aswell as practical suppor t.

■ Adult mental health servicesshould support parents in theirparenting role by providingthem with specialist servicesand by helping them to makecontact with their localparenting support projects.

Barnardo’s calls on the UKgovernments to ensure thatassessments for compulsorytreatment of parents with mentalhealth problems are undertakenalongside parallel assessments ofthe support needs of the family asa whole.They should do this byamending the Mental Health Act1983, the Mental Health(Northern Ireland) Order 1986and Mental Health (Care andTreatment) (Scotland) Act 2003 sothat assessments take placealongside assessments of child andfamily support needs under theChildren Act 1989, the Children(Scotland) Act 1995 and theChildren (Northern Ireland)Order 1995.

Guidance on care planning foradult mental health service users,whether in hospital or in thecommunity, should include anexplicit requirement to ascertainand meet the parenting supportneeds of adults accessing mentalhealth services.

What we would like to see

99

■ Adult mental health servicesshould collect informationon the numbers of parentsaccessing their services inorder to inform servicedevelopment.

All statutory providers ofmental health care in thecommunity or in inpatientsettings should record thefamily and parentingresponsibilities of adults theyprovide services to.Thesestatistics should be collated atregion and national levels inorder to inform commissioningof parenting support andyoung carers services.

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Faiza has had to run thehousehold since she was a littlegirl. She has always paid the billsand arranged the family’s finances,did the shopping, cleaning andorganised household repairs.

Faiza had to look after thefamily’s health: making sure thather parents took their medicationand checking her mother’s bloodsugar levels. She says, ‘I also hadto take a parental role over mybrother helping him withhomework, attending parent’sevenings and arranging doctor’sappointments.’ During the lastyears of their father’s life bothchildren cared for his physical

needs – bathing him and helpinghim get around the house.‘Doctors were often unhelpful’,Faiza says. ‘They saw me as achild, whereas I was the primarycarer.They didn’t respect myopinion.’ This was especially thecase with mental health services.Faiza consistently asked them tolower her mother’s dosage dueto side effects but felt that heropinion was ignored.

Her caring duties meant thatFaiza was missing school.Whenshe should have been playing atschool with friends, she wastaking her mother to see thepsychiatrist. She says, ‘I was

missing out on the social aspectof school – being unable to joinfriends at the cinema, parties andwhen they got together.’Faiza’s head teacher referred herto Barnardo’s when she was 10.Barnardo’s has groups in Faiza’sarea that run in the evenings.There she was introduced topeople of a similar age who hadsimilar circumstances and she wasgiven information about mentalillness. She was also given anoutlet – time away from caringduties where she could enjoyherself and take part in activitiesthat she would otherwise beunable to take part in such asswimming and days out. Staff

Faiza is 18 years old. She lives with her younger brother Mahmoud and with their motherwho suffers from depression, schizophrenia and diabetes. Faiza looks after her mother.Until September 2004, when he passed away, Faiza also had to look after her father. Hewas old and suffered from dementia and both he and Faiza’s mother needed Faiza’sconstant support. Neither of them could speak English.The family were reluctant to seekhelp from social services as they were worried that they would be separated.

Faiza’s story

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would pick her up and return herhome afterwards, a service thatshe says is ‘very important’.

Barnardo’s gave Faiza helporganising visits to her local GP.They helped her with forms andto set-up better ways of managingthe family finances.They liaisedwith social services and arrangedfor Faiza and her family to attendmeetings during evening hours sothat they did not conflict withschool. Faiza’s family had neverhad anyone to call in anemergency but Barnardo’s helpedthem to access the emergencysupport of duty social workers.

During Faiza’s GCSEs she wasreally struggling to keepeverything together. Barnardo’shelped her to put in a request tosocial services to provide homehelp for her father. His dementiameant that she worried about hissafety whenever she went out.The home help would cometwice a day during the week,

helping to take the pressure offFaiza and allowing her toconcentrate on her school work.

She says of the work withBarnardo’s, ‘They make sure thateverything is working aseffectively as possible – that thefamily are accessing all of theservices that are available.Theydon’t just concentrate on me, buton the whole family.’

Faiza’s did well in her GCSE’s andachieved 14 qualifications atgrades A* to C.This is testamentto her commitment and hardwork. She is now studying A-levels and is looking forward togoing to university somewhereclose by so that she can continueto care for her mum. She says‘To put it simply, I wouldn’t havebeen able to achieve this withoutthe support of Barnardo’s staff.’

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Cain’s school work suffered,‘It had been difficult…I couldn’tconcentrate’ he says.As withmany children in his position Cainalso felt confused about why thiswas happening.At one stage heeven blamed himself, ‘I felt like itwas my fault.’

When his mum was taken intohospital he went into localauthority care. No oneexplained what was happeningto him. He says ‘All I got toldwas ‘your mum’s not well’, theydidn’t say how long it would be for.They just slammed meand my brother into care.’ Cain and his brother weremoved around to three or four

different foster care placementsmost of which were difficultexperiences for the boys.

Cain says, ‘It made us feel angry.Especially when they said theywanted to separate us, andmove us to different areas.Wedidn’t want to live far apartfrom one another, we alwaysstuck together.’

Since joining a Barnardo’s youngcarers group Cain has becomeoptimistic about the future. Hehas had someone to talk to whohas explained everything abouthis mum’s illness and helped himto understand how the familycan cope.

His Barnardo’s worker hashelped to make sure that thefamily is getting all the support itshould and has called up to makesure that benefits were paid ontime. She has visited his schoolto make sure that the teachersknow that Cain hasresponsibilities outside schoolthat may affect his timekeepingand has involved Cain in anumber of activities where hecan make new friends. Cain hasbeen on an outward boundholiday and has grown inconfidence. He says, ‘It’s time foryou, it’s time to do something foryourself.’ Cain’s family is now ontop of things and Cain is sittinghis GCSE’s.

Cain’s story

Cain is 15. For most of his life his mum has taken medication to help with herschizophrenia. Cain takes her to the doctors and leaves notes to make sure she takesher medication on time. Some time back his mother was also diagnosed with cancer andwas in a lot of pain – Cain and his brother would help her to move around and attendto her needs. Cain does the family shopping, prepares food and takes charge of payingbills and sorting out any problems that arise.

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Growing up with a parent withmental health problems wasdifficult.When health workersvisited the family house theyignored Sue, ‘It’s as if I wasinvisible’ she says. Sue was givenno information about what wasgoing on. Being the eldest offour children she felt especiallyupset when her brothers andsisters asked her who the manor woman was sitting in theliving room talking to their mum and dad, but she couldn’tanswer them because she didn’t know herself.

Sue remembers difficult times atschool. ‘Mum would come inshouting and swearing in themiddle of my lessons and takingus home early. I can remember

when she’d go up to othermums and shout at them forslagging her off behind her backwhen they weren’t.Things got sobad that she accused a supplyteacher of hitting my brotherand as a result she was sacked.I thought things would getbetter but they never did. In the end the head teacher had to threaten her by saying hewould ban her and us from theschool if my mum didn’t changeher behaviour.’

Sue’s mum would get up in theearly hours in the morning andbecome very distressed - turningall the lights on and knocking onpeople’s doors to confrontthem. Eventually she had to gointo hospital.This was a very

hard and traumatic time for thewhole family.The environmentwas frightening and there waslittle space in which the familycould be together comfortably.Sue felt intimidated by thenumber of new people allaround her, saying ‘I feltfrustrated, confused. I did notknow who they were or whatthey were doing’.

Sue’s mum was assigned a socialworker and Sue and herbrothers and sisters werereferred to a local Barnardo’syoung carers group.With peoplethreatening to contact socialservices, Sue had beenconvinced that she would betaken into care. Her youngcarers worker explained that

22 year old Sue works for a Barnardo’s young carers project. She became involved afterbeing referred as a young carer herself. Sue started attending when she was 14 as hermum was diagnosed as having serious mental health problems.As well as being aschizophrenic suffering from depression, mood swings and episodes and delusions, Sue’smum also suffered with arthritis and epilepsy.

Sue’s story

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this wasn’t going to happen.Sue says ‘I cried when she came.She was the first person toexplain things to us and give usthe opportunity to askquestions…the young carersworker came across assomeone who was interested inwhat I had to say and someonewho cared.’

Sue now works full time forBarnardo’s and continues tocare for her mum.Through theefforts of Sue and others, thepsychiatric unit where her mumhad been admitted now has aFamily Room. Children andyoung people now have thechoice to visit their parentsaway from the ward, which ismore comforting for families.

She says ‘The care and supportI’ve had from Barnardo’s, thefeeling that people believe inme, has been vital in getting mewhere I am today.’

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Jane cooks, cleans and generallyruns the house. She says, ‘Thereare some days when he lies inbed all day unable to comeout…when this happens I try tohelp him to realise thateverything will be OK.’

Jane has cared for her dad sinceshe was 13.The first two yearswere a very hard and confusingtime. ‘I felt that I was being keptin the dark’, she says, ‘and mycaring started to affect me quitebadly’.Whereas she used to bein the top class, the pressure ofher home life began to take itstoll and she began to fall behind.Jane didn’t want to tell anybodyabout her home life. ‘I feltashamed’, she says, ‘and whensomeone who was supposed to

be my friend told others atschool about my dad, I thenstarted to get bullied’. As thebullying became worse Janestarted to self-harm. Eventually,at her lowest point, she tried totake her own life. Jane says ‘Itwas a vicious circle…it shouldn’tbe allowed to get that far’.

After her suicide attempt Janewas assigned a social workerwho referred her to aBarnardo’s young carers’ project.There she has made new friendsand has found people who shecan trust. ‘It’s brilliant’ she says,‘it might seem like a small thingbut it’s so important to have away of getting things off yourshoulders’. Barnardo’s hashelped Jane to understand and

come to terms with her dad’sillness and has taken some ofthe pressure out of her homelife by helping her to access allavailable support. She feels thatit has given her confidence andthat it represents a ‘newbeginning’. Jane is now sittingher GCSEs and has beenaccepted into 6th form collegeto study for A-levels.

Jane, 16, lives with her dad. He suffers from clinical depression, anxiety, stress and anattachment disorder. He finds it very difficult to adapt to new situations, places, or peopleand becomes distressed easily.What started as feelings once or twice a week escalatedinto him having the feelings daily and becoming suicidal.

Jane’s story

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Tanners Lane, Barkingside, Ilford, Essex IG6 1QG Tel 020 8550 8822

Registered Charity No.216250 www.barnardos.org.uk74

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