Supporting children who have a parent with a mental illness

Transcription

1 Include Programme Supporting children who have a parent with a mental illness Information for professionals A better childhood. For every child.

2 The Children s Society Contents The Children s Society works through local and national partnerships to change children s lives for the better. The Children s Society is an expert service provider that delivers outcomes to meet your priorities for families, children and young people in your area. Close partnership working with our funders, added together with our local knowledge and expertise means we provide innovative solutions, which deliver outcomes that maximise the impact of your available funding. We are passionate about our work. We work with you in a transparent and flexible way. We are fully committed to meeting agreed outcomes every time. We have worked alongside service commissioners in local authorities and the wider public sector for over 125 years. We currently provide services to over 60 local authorities across the UK. We have experience in a comprehensive range of services that are tailored to meet individual needs. Our work spans from prevention through to intensive targeted support services. The Children s Society s Include Programme offers information, training and support to both statutory and voluntary sectors who work with young carers and their families. More information and a range of information materials and resources including a Good Practice Guide for Practitioners are available at or call To find out about our full range of services that will achieve your outcomes, provide value for money and deliver local solutions contact us on or visit What are the issues? page 4 How many children care for a parent with a mental illness? page 5 What tasks might these young carers be carrying out? page 7 What impact does this have on a child s life? page 8 What do children say they need? page 10 What else can practitioners do? page 14 Supporting legislation and guidance page 17 Resources and further information page 22 References page 26 Key Principles of Practice for young carers and their families page 27 2 Include Programme Supporting children who have a parent with a mental illness 3

3 What are the issues? It is estimated that mental illness will affect 1 in 4 of us at some time in our lives. 1 Many children grow up therefore with a parent who suffers a mental illness. Most of these will be mild or short-lived and the family copes. However some children live with a parent who has an enduring mental illness such as a personality disorder or long standing depression, or a severe mental illness such as schizophrenia or bi-polar disorder. Families who are unsupported in these situations may find it difficult to cope and sometimes rely on children to take on inappropriate caring responsibilities. This can impact on the child s physical health, emotional well-being and future prospects. There is evidence to suggest that the person with mental illness supported by a young carer is less likely to be receiving treatment and support in their own right, compared to the person supported by an adult carer. 2 Research has also shown that many mental health professionals are not aware that their patients are also parents 3 and that, for a range of reasons, young carers are often hidden and their needs and those of the person for whom they are caring are only identified when there is a crisis. Even then, the extent of their caring role and the impact that it has on their own development, may not be recognised quickly or fully assessed. 4 This booklet has been produced to raise awareness of the needs of these children and their families, compile suggestions for good practice given by young carers and those who work with them, and identify resources of further training for professionals. How many children care for a parent with a mental illness? The 2001 Census found 175,000 young carers in the UK of which 5,000 were aged between five and seven years old. In a large sample of young carers who were being supported by specialist projects across the UK just under a third of the young people were caring for a person (usually a parent) with mental health problems. 5 If these figures are extrapolated there are over 50,000 young carers in the UK caring for a person with a mental illness. There are many reasons why young carers caring for a person with a mental illness may remain hidden including the absence of readily observable evidence of the illness and its episodic nature. In addition many young carers are very loyal to their parents and would feel guilty asking for help, fear family breakup or the stigma associated with being labelled as having a parent with a mental illness. Some go to great lengths to conceal the illness and make up excuses for their parents behaviour. Others may not understand that their family situation is unusual. In ethnic minority groups there may be fear of being stigmatised and of racial harassment by others. There is also evidence of mental health problems in asylum seekers, who may arrive in trauma or experiencing mental distress, but fear of deportation and the stigma surrounding mental ill health in some cultures can prevent them from asking for help and their needs may remain unmet. 6 For all these reasons the number of young carers looking after a parent with a mental illness is likely to be higher than current statistics show. 4 Include Programme Supporting children who have a parent with a mental illness 5

4 Refugee and asylum seeking families Funded by the Department of Health, The Children s Society has developed the Refugee Toolkit, an online information and practice resource for all practitioners. Adults and Children s Services, Health, Education and the Voluntary sector can use it to ensure both asylum seeking and refugee people with children under 18 have access to appropriate health services and that their children do not have to undertake inappropriate care. The Refugee Toolkit is available at Black and minority ethnic families The Engage Toolkit is a website for all practitioners supporting black and minority ethnic young carers and family carers including adults and children s services, Health, Education and the voluntary sector and anyone providing services to families affected by ill health and disability. Funded by the Department of Health, this site brings together information and resources and links to help develop and implement best policy and practice for services to support black and minority ethnic young carers and family carers. The Engage Toolkit is available at: What tasks might these young carers be carrying out? Most young people undertake caring tasks at some time within their family. However some children and young people may be undertaking inappropriate tasks for their age or taking on levels care that have a negative impact on their own wellbeing. Children who have a parent with a mental illness may undertake inappropriate domestic and emotional care responsibilities. These may include: Household management cleaning, cooking, washing and shopping. Emotional support sitting with parents and monitoring a parents emotional needs. Personal care help with washing and dressing. Caring for younger siblings. Administration of medication. Other household administration such as paying bills and communicating for the family either because the parent is unable to because of mental ill health or because their first language is not English. 5 Recent evidence has shown that many young carers are responsible for administering medication to parents who have serious mental health problems. This has serious implications for the safety of both the young carer and the parent and must be addressed as a matter of urgency. 7 Some young carers may be supporting parents who are misusing drugs or dependent on alcohol in addition to having a mental illness. 6 Include Programme Supporting children who have a parent with a mental illness 7

5 What impact does this have on a young carer s life? Children who are aware of the symptoms of a family member suffering from mental illness may be confused about the illness. This can lead them to feel scared, angry and powerless to change their situation. Predominant feelings vary depending on the child s age and level of understanding. Fear and guilt are often more common in younger children, while anger and embarrassment tend to be more common amongst adolescents. Some children: are withdrawn. appear anxious. find it difficult to concentrate on their school work. This can lead to underachievement in education and as a consequence reduced life chances. have low self-esteem and become depressed, having a fatalistic acceptance of their life situation. show behaviour difficulties, violent or self-destructive behaviour. adopt paranoid or suspicious behaviour as they believe their parents delusions. Many children are teased or bullied because they have a family member with a mental illness and the family can experience isolation. Some children have periods of separation from their parents if the parents are in hospital. This can be confusing and stressful. Daily routines may be changed, education disrupted and siblings separated, all of which have an impact on the child. However, it is not inevitable that children are at risk of significant harm because they care for a parent with a mental illness. Caring can sometimes help cement bonds between parents and children as children who care can feel both valued and included. 3 My mum has a mental illness, but no one told me why she was acting so weird. None of the doctors told me. It was scary. I had to find out for myself. They didn t think how I was feeling and worrying. (Young carer) 8 Include Programme Supporting children who have a parent with a mental illness 9

6 What do children say they need? Information about the illness Research indicates that giving information aids coping. Explaining the illness to the child may help because: children often imagine that things are worse than they really are. Giving information reduces fear understanding the illness can help the child empathise with and respect the person with the illness rather than feeling angry towards them. the child will realise that it is not their fault and feelings of guilt will be reduced. Children may also need information about the treatment the parent is receiving. The child s age, level of understanding, culture and the parent s wishes must be considered when providing information. Parents may require sensitive help to understand their child s need for information. Some may feel that they are protecting the child by keeping this information from them but even very young children are aware when their parents are ill and worry about them. (For help with information sharing, see Resources and further information, page 22, for Partners in Care leaflet.) No-one ever sat down and explained to me and my brother what manic depression was. Mum might have done, but no professional person... if someone had explained what it was it would have helped. (Young carer) A chance to ask questions Some of the questions children may ask are: Why is the ill the person acting this way? Is it my fault? Will things always be like this? Will the person get better? What will happen to the person if the illness deteriorates? Does the person still love me? Will I get this illness? Will my family be split up? What will happen to me? Children and young people need help to develop their own understanding of mental health problems, and to be relieved of any self-blame that they may have. There may be evidence of genetic factors in some mental illness. However the child can be reassured that this is only one risk factor and that their chances of developing a mental health problem can be lessened by talking about their feelings, seeking prompt help, maintaining a healthy lifestyle and being aware of the risks associated with alcohol and drugs. Doctors should not tell parents to stop being open with their children. Young carers need to understand what s going on so they can help. (Young carer) 10 Include Programme Supporting children who have a parent with a mental illness 11

7 Someone to talk to whom they can trust Children need one key worker who is known to them, who will listen to them and give them a positive response when they ask for help. Children and young people may also have important information about the person with the mental illness. They need to know that this will be listened to and taken into account in care plans. Someone to contact in a crisis Children need help to recognise the behavioural signs that indicate that their parent is becoming ill. They need to know what is and what is not acceptable behaviour from an adult. They need someone who they can contact at any time for help. Practical help Children and young people need to be looked after not to be left looking after others and they need to have time out for themselves. Providing practical support to the family (housing, benefits, childcare) can reduce stress factors. When you re younger you don t really understand what s happening. You know this person as your mum... Then suddenly they turn into a totally different person and you can t understand. You re trying to relate what they re doing to the person that you ve known all your life and you can t do it. (Young carer) To know that their situation is not uncommon Many young carers appreciate having access to a place or group where they can mix with other children and young people who have had similar experiences. Young Carers Projects have been found to be invaluable, appreciated by young carers, their families and professionals. 7 A list of young carers projects can be found at My young carers project helps me by giving someone I can talk to about things I can t with friends. (Young carer) To know that their role in the family is recognised and respected Evidence suggests that what young carers often require most is recognition of their caring contributions alongside practical support. (Aldridge and Becker p123) 8 Support and understanding at school Young carers have expressed the need for support and understanding at school but they also wish to keep school and friends separate from their caring responsibilities. [We would like] support from schools in a discreet way, because sometimes we feel embarrassed. (Young Carers Festival 2007) 12 Include Programme Supporting children who have a parent with a mental illness 13

8 What else can practitioners do? 1. If a child/young person asks you for help, appreciate that this must have been a difficult step to take and acknowledge this. 2. SCIE Guidance (2009) recommends that agencies Think child, think parent, think family in order to develop new solutions to improve outcomes for parents with mental health problems and their families. If you are a mental health professional find out if your patient is a parent and document the names and dates of birth of The importance of the whole-family approach Young carers do not care in isolation from the rest of their family. Although they need support for themselves, their needs should also be considered in the context of their whole family. A resource for practitioners It is important to ensure that, whoever or however the family (Parent or Child) in need of support first makes contact with an agency, the same processes or pathway is followed, and that at all times the outcomes of Every Child Matters are considered. This is not an assessment tool but a map for both families and agencies to follow so they can see what choices, what responsibilities and what lines of accountability for services may be available. children. Enquire about the impact that their illness has on other family members. Do not leave it for someone else. The key to change is the development of a whole family approach. The Whole Family Pathway (see Resources and further information, page 22) is a web based resource signposting practitioners to support for young carers and their families. It is also a useful map for families to follow to inform their choices. ENTER 3. Work with the well parent and child s extended family. 4. When appropriate include children in discussions about their caring responsibilities and consult with them about their family s needs. 5. If a parent with a mental illness is on medication consider who administers it. It is usually inappropriate for a child to be responsible for reminding or giving their parent medication. Consider what extra support the family may need to ensure that a child is not handling medication. 6. If your patient is in hospital consider what arrangements are made for visits. Is there a private room? (See Barnardos (2007) Parents in hospital in Resources and further information, page 22) Also identify and meet the needs arising from separation and loss. 7. Work together with other agencies. Evidence shows that a major issue for families who have a parent with a mental health problem is a lack of joint working between Adult Mental Health Teams and Children s Services. The Practice guidance to the Carers (Equal Opportunities) Act 2004 (SCIE 2005) states that Local Authorities should have a protocol, shared between adults and children s services, for identifying and assessing young carers. 9 Working together to support young carers A Model Local Memorandum of Understanding between Statutory Directors for Children s Services and Adult Social Services is a useful resource for this. (see Supporting legislation and guidance, page 17) Consider offering the child or referring the child for an assessment following the Common Assessment Framework (CAF) guidance and arranging a team around the child meeting. For more information see If the child s health or development is impaired or the child is suffering or may suffer significant harm they should be identified as a child in need and 14 Include Programme Supporting children who have a parent with a mental illness 15

9 Supporting legislation and guidance referred to Children s Services for an assessment using the 1989 Children s Act using the Framework for Assessment of Children in Need and their Families. 8. Children in families where there are co-existing mental health and substance misuse needs may be exposed to circumstances which compromise their safety. Consult Hidden Harm: responding to the children of problem drug users Ensure that intervention in black and ethnic minority families is culturally appropriate. All staff should have appropriate training in cultural competence and demonstrate at least a minimum understanding of the personal care and social care needs of the communities they are working in (Engage Toolkit: see Resources and further information, page 22). 10. Involve translation services for families where English is not their first language to prevent children translating inappropriate information. Contact your local council to find out local interpreting services or access Language Line (see Resources and further information, page 22). [Adult and Children s Services should] listen to what we have to say and actually take it on board. (Young carer) Think child, think parent, think family: a guide to parental mental health and child welfare Social Care Institute for Excellence (2009) Working together to support young carers A Model Local Memorandum of Understanding between Statutory Directors for Children s Services and Adult Social Services at Mental Health Act 1983 England and Wales Mental Health Act 2007 at The Mental Health Act 1983 covers the legal requirements of local social services to diagnose and treat individuals with mental health problems. Following this the Care Programme Approach (CPA, 1991) outlines that everyone diagnosed with a mental health problem should be involved in an assessment of their needs and a plan drawn up of their care package. The CPA should identify the carer(s) involved, outline how they should be involved, and outline the need for a carers assessment. Young carers are entitled to a consideration of their needs on the Care Plan. No care package should depend on the inappropriate caring role of a child. 9 Signposts: See me, hear me, talk to me talk to my family as well. Working together to improve outcomes for young carers in families affected by enduring parental mental illness or substance misuse. at: download/news/signposts.pdf Association of Directors of Adult Social Services (ADASS) and Association of Directors of Children s Services (ADCS) 2011 Signposts shares evidence based practice, promotes local discussions and encourages improved outcomes. It offers signposts to effective practice, local conversations and partnership working with a focus on improving outcomes for young carers 16 Include Programme Supporting children who have a parent with a mental illness 17

10 and their families, particularly those affected by enduring mental ill health and/or substance misuse with a view that this is taken forward in line with local needs and circumstances. National Service Framework for Mental Health 1999 (Standard 6) at Carers of service users who provide regular and substantial care for a person on CPA should be offered an assessment of their caring, physical and mental health needs. NHS and Community Care Act 1990 Parents have the right to receive help with their parenting from Adult Services e.g. tasks relating to child care can be carried out by a parent s support worker. Direct payments can be used for this purpose. Direct Payments Guidance 2003 at Carers and Disabled Children Act 2000 Carers (Recognition and Services) Act 1995 Carers (Equal Opportunities) Act 2004 Children over 16 have the right to a carers assessment if they are caring for someone over 18 and a right to direct payments. All of the above initiatives, to support carers, cover carers of people with mental health problems but research has shown that they are not always getting access to these resources. 2 Recognised, valued and supported: next steps for the Carers Strategy 2010 The visions and outcomes from the Carers Strategy published in 2008 still hold firm (some minor changes) although a call for priorities took place to look at focusing action from the strategy, which informed the review in Four Priority areas where recognised through the review were: 1. Identification and recognition: this is focused on early identification and involving carers in the development of services and support importance of involving carers in delivery of QIPP (Quality, Innovation, Productivity and Prevention) workstreams. 2. Realising and releasing potential: enabling carers to fulfil their educational and employment potential. Next steps include DfE Early intervention Grants from local government from April 2011 which will bring together multiple funding streams for young people and families including for young carers. 3. A life outside of caring: Personalised support both for carers and those they support, enabling them to have a family and community life. Taking a personalisation approach to caring means that services and support will be tailored to meet specific need including for young carers. 4. Supporting carers to stay healthy: mentally and physically: Additional funds will be made available to the NHS to support carers to take breaks from caring responsibilities over the next 4 years. The Framework for Assessment of Children in Need and their Families 2000 The Children Act 2004 The Common Assessment Framework Include Programme Supporting children who have a parent with a mental illness 19

11 No Health Without Mental Health: A Cross-Government Mental Health Outcomes Strategy for People of All Ages, 2010 at Publicationsandstatistics/ Publications/PublicationsPolicy AndGuidance/DH_ This strategy sets out the Government s ambition to mainstream mental health, and establish parity of esteem between services for people with mental and physical health problems. It shows how the Government is working to improve the mental health and well being of the population, and get better outcomes for people with mental health problems. No Health Without Mental Health is accompanied by the following documents, published individually: Delivering Better Mental Health Outcomes The Economic Case for Improving Efficiency and Quality in Mental Health Impact Assessment Analysis of the Impact on Equality Analysis of the Impact on Equality Evidence base Talking Therapies: A four year plan of action Talking Therapies: Impact Assessment Talking Therapies: Analysis of the Impact on Equality Carers and personalisation: improving outcomes (DH) 2010 at groups/dh_digitalassets/@dh/@ en/@ps/documents/digitalasset/ dh_ pdf One of the challenges of personalisation is to enable commissioners, providers, carers and those they support to develop can do thinking around care and support that is at once responsive, creative and sustainable. This document offers signposts for better practice and outcomes. It will be of interest to carers and those they support, and to all others engaged in providing carers support, including personalisation/transformation leads in councils. Think Local, Act Personal (DH) 2011 at uk/_library/ppf/ncas/partnership_ Agreement_final_29_October_2010. pdf Sets out the new commitment to moving forward with personalisation and community-based support. Building on the progress from Putting People First (HM Government 2007) which outlined the personalised Adult Social Care System that Agreed and shared outcomes which should ensure people, irrespective of ill or disability, are supported to: Live independently and to sustain a family unit which avoids children being required to take on inappropriate caring roles. 20 Include Programme Supporting children who have a parent with a mental illness 21

12 Resources and further information Information about young carers Include Programme The Include Programme is home to The Children s Society National Young Carers Initiative which provides a national focus for people who work to support young carers and their families across England. More information about The Young Carers Initiative and access to the Whole Family Pathway (Leadbitter, H 2008) can be found at The Princess Royal Trust for Carers Offers useful information and support for all unpaid carers throughout the UK. It has a website for young carers: Training resources for professionals working with families with a parent with mental illness Being Seen and Heard, a training package including a video and CD-ROM of additional resources providing practical suggestions for working with parents and children effectively. Royal College of Psychiatrists, 17 Belgrave Square, London SW1X 8PG Tel: ext mentalhealthinfo.aspx The Mental Health and Growing Up series contains 36 fact sheets on a range of common mental health problems and includes Parents with a mental illness: the problems for children (fact sheet 16). Available to download from mentalhealthinfo.aspx Crossing Bridges, a training resource for working with mentally ill parents and their children. (1998) Department of Health. Keeping the Family in Mind, a 15min DVD, booklets and advice sheets on supporting families with a parent who has a mental illness. and_publications Partners in Care. A checklist for professionals coming into contact with the children of parents with mental health problems. Royal College of Psychiatrists with The Princess Royal Trust for Carers. or More resources can be found at SCIE including Think child, think parent, think family: a guide to parental mental health and child welfare. Help for health professionals in assisting asylum seekers and refugees with mental health issues. Language Line is a global interpreting and translation company enabling organisations to communicate effectively with people of all nationalities. Engage Toolkit: A website for all practitioners supporting black and minority ethnic young carers and family carers and anyone providing services to families affected by ill health and disability, this site brings together information and resources and links to help develop and implement best policy and practice for services to support black and minority ethnic young carers and family carers Include Programme Supporting children who have a parent with a mental illness 23

13 Resources for children and their families Caring around the clock. PDF file with info and support for young people. Royal College of Psychiatrists When a parent has mental illness: helping children cope a leaflet for parents and professionals to provide support for young carers. Produced by the World Fellowship for Schizophrenia and allied disorders. Available free. Mental illness in your family? A Young Minds booklet. Written for children and young people. Available from Young Minds, a national charity committed to improving the mental health of all children and young people. Tel The Wise Mouse by Virginia Ironside. A story aimed at children aged under 10 to help them cope when a family member has a mental illness. Available from Young Minds. Tel Information for young carers and their families including a video clip by a young carer. Minds, myths and ME a fact pack for young people who live with someone with a mental illness, produced by Gloucestershire Young Carers. Tel Available from ac.uk/mentalhealthinfo.aspx Rethink has local support groups for people with mental illnesses and their families Please note these organisations and resources are listed for your information. The Children s Society does not necessarily endorse them. 24 Include Programme Supporting children who have a parent with a mental illness 25

14 References Key Principles of Practice for young carers and their families 12 1 Royal College of Psychiatrists (2004) Mental health and growing up: Factsheet 16 Royal College of Psychiatrists. London 2 Department of Health (2002) Developing services for carers and families of people with mental illness 3 Aldridge J and Becker S (2003) Children who care. Zero2nineteen 4 Emotional support for young carers. A report prepared for the Royal College of Psychiatrists by The Children s Society Young Carers Initiative (2006) 5 Dearden C and Becker S (2004) Young carers in the UK: the 2004 report. Carers UK. 6 British Medical Association (2002) Asylum seekers: meeting their healthcare needs. British Medical Association Board of Science and Education. 7 Aldridge J and Sharpe D (2007) Pictures of Young Caring. Young Carers Research Group. Loughborough University. 8 Aldridge J and Becker S (2003) Children caring for parents with mental illness. Perspectives of young carers, parents and professionals. The Policy Press 9 Social Care Institute for Excellence (2005) Practice Guide 5: Implementing the Carers (Equal Opportunities) Act Hidden Harm: Responding to the needs of problem drug users. Report of an inquiry by The Advisory Council on the Misuse of Drugs. June Frank J (2002) Making it Work: Good practice with young carers and their families. The Children s Society with The Princess Royal Trust for Carers 12 Frank J and Mc Larnon J (2008) Young carers, parents and their families: Key Principles of Practice. Supportive practice guidance for those who work directly with, or commission services for, young carers and their families. Young Carers Initiative, The Children s Society Quotes from young carers in this document are taken from Making it Work 11 or are messages from the Young Carers Festival, an annual event organised by The Children s Society and the YMCA Fairthorne Manor. Children s welfare should be promoted and safeguarded by working towards the prevention of any child undertaking inappropriate levels of care and responsibility for any family member. The key to change is the development of a whole family approach and for all agencies to work together, including children s and adults services, to offer co-ordinated assessments and services to the child and the whole family. Young carers and their families are the experts on their own lives and as such must be fully informed and involved in the development and delivery of support services. Young carers will have the same access to education and career choices as their peers. It is essential to continue to raise awareness of young carers and to support and influence change effectively. Work with young carers and their families must be monitored and evaluated regularly. Local young carers projects or other targeted services should be available to provide safe, quality support to those children who continue to be affected by any caring role within their family. Taken from Young carers, parents and their families: key principles of practice, available from the Include Programme. 26 Include Programme Supporting children who have a parent with a mental illness 27

15 Include Programme The Children s Society s Include Programme supports children and young people who care for parents or siblings who suffer from chronic illness or disability. We campaign for change and promote best practice with central and local government and work in partnership with social workers, teachers and health care professionals to deliver solutions that consider the needs of the whole family. The Children s Society s Include Programme offers information, training and support to both statutory and voluntary sectors who work with young carers and their families. More information and a range of resources, including a Good Practice Guide for Practitioners are available at How to contact us The Children s Society Include Programme, Unit 4, Calford House, Wessex Business Park, Wessex Way, Colden Common, Hampshire SO21 1WP Telephone: Fax: include@ childrenssociety.org.uk org.uk/youngcarers Written by Christine Slatcher This information is available in other formats. The Children s Society 2011 Photograph modelled for The Children s Society Nick David The Children s Society is a registered charity number A better childhood. For every child.