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Community care of children with complex health needs
SYMPOSIUM: SOCIAL PAEDIATRICS
Community care of children with complex health needs
Learning objectives C
Douglas E Simkiss C
Abstract Children with complex health needs include children with disabilities, children with assisted technology and children with palliative care needs. Increasingly care for these children happens outside of hospital. Key issues are effective assessment without duplication and coordinated care involving multi-disciplinary and inter-agency teams. Joint commissioning, key working and integrated care pathways are important developments which, with a focus on listening to children and their families as they express their needs, are resulting in improved care. An understanding of the role of other practitioners and agencies is an essential component to good care for these children.
C
Other key policy initiatives include the Every Child Matters: change for children programme (2003) which aims to improve and integrate children’s services and Together from the Start which proposes ‘an identified worker or agency who would work with, advice, be a source of information and support to the family, facilitate more joined up working and alleviate some of the stress for families’. In 2008 the Department of Health published Better care: Better lives, a strategy for children with life-limiting and lifethreatening conditions including disabled children. The drive to improve care for children with complex health needs has seen £340 million in NHS allocations between 2008 and 2011 focussed on improving access to short breaks, community equipment, wheelchairs and children’s palliative care.
Keywords complex health needs; disabled children; life-limiting conditions; life-threatening conditions; palliative care
Introduction Historically paediatrics, like other clinical disciplines, has focussed on curative medicine. A professional emphasis on the care of children with long term disability, including children who are expected to die, has developed more recently. In 1976 the Committee on Child Health Services, chaired by Professor Donald Court, published ‘Fit For the Future’ a far-sighted report which proposed a move from care of children in hospital to care in the community. Many of the recommendations from ‘Fit for the Future’ were not initially welcomed by the medical profession, but over the decades since, almost all of them have been implemented. The report is still worth reading today. However, community care for children with complex health needs is still far from all that it could be and new recommendations emerge to strengthen the capacity of community services to meet the demand for care. Standard 8 in the National Service Framework for Children, Young People and Maternity Services is about Disabled children and young people and those with complex health needs. The document says that these children should receive treatment, care and support that match their needs, coordinated by the NHS and other agencies and which helps them and their families live as ordinary lives as possible. The standard has five themes: Services promote inclusion for disabled children Services for disabled children are easy to use Services are child-centred Services support and strengthen families Partnership with children and their parents or carers, and other agencies
Which children have complex health needs? One of the issues in this topic is definitions. There is no universally agreed definition of children with complex health needs but it includes three overlapping groups; children with disabilities, children with assisted technology and children with palliative care needs. Clearly, an individual child could simultaneously, or over a period of time, be in two or all three of these groups. One good working definition is ‘children with on-going healthcare needs related to the use of medical technology and who require the support of a range of professionals and agencies’. The medical technology includes home ventilation, tracheostomy and home oxygen, nasogastric feeding or gastrostomy with enteral nutrition, parenteral nutrition, ambulatory peritoneal dialysis and home renal dialysis. The list continues to expand because of technological advances in diagnosis, suitable equipment for use at home and improved outcomes from critical illnesses. But issues with agreement to funding, equipment costs, organizing home care support, respite and education continue to commonly cause delay in discharge planning from hospital. The emphasis on multi-disciplinary teams and inter-agency working is important and the government guidance is intended to encourage health, education and social care to collectively commission and provide services for children whose needs are greater than the provision available in one service. The Children Act 2004 required every local authority to appoint a commissioner of children’s services and a board (Children’s Trusts) to coordinate and commission local children’s services. Other terms that need defining are ‘life-limiting conditions’ e diseases where there is no reasonable hope of cure and from
Douglas E Simkiss FRCP (Ed) FRCPCH FHEA is Associate Professor of Child Health in the Division of Mental Health and Wellbeing, Warwick Medical School, University of Warwick, Coventry, UK. Conflict of interest: none.
PAEDIATRICS AND CHILD HEALTH 22:5
‘children with complex health needs’ is an imprecise term but includes children with disability, life-threatening and life-limiting conditions there is a network of support for these children and their families outside of hospital across the health, education, social work and voluntary sectors. To work best, this support has to be coordinated by a key worker listening to the wishes of the child and family integrated care pathways are a tool to facilitate care for these children and their families
193
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
which children or young people will die and ‘life-threatening conditions’ in which curative treatment may be feasible but can fail, such as cancer. Children with these conditions often have complex healthcare needs.
ED NE NT AL
LO PM E
VE
DE
CI
Stimulation
CH
TY
’S
PA
CHILD Safeguarding and promoting welfare
CA
ILD
Guidance and boundaries
G
Selfcare skills
Emotional warmth
IN
Social presentation
NT
Identity Family and social relationships
Because of the imprecise definition, it is perhaps not surprising that there are not clear statistics on the number of children with complex care needs. The Lifetime project in Bath defined a non malignant life-threatening or life-limiting condition as ‘any condition developed in childhood (before the age of 19 years) whereby the child is likely to die prematurely (before the age of 40 years), or any condition developed in childhood that, without major intervention, will cause the child to die prematurely’. Using this definition, there was a prevalence of 1.28/1000 (0e19 year olds) in that district and a prevalence of malignant disease under treatment of 0.65/1000 children and young people. This is an important group of children in need.
RE
Epidemiology
Ensuring safety PA
Emotional and behavioural development
Basic care
S
Health Education
Stability
FAMILY AND ENVIRONMENTAL FACTORS y or ng s t ni hi t io il y c m f un Fa nd ly a mi fa er id W g in u s ent Ho m oy pl Em e l ia m oc co In ’s s n o il y t i m ra Fa teg in i t y un m es m urc Co s o re
Needs based assessments and care coordination
Figure 1 The common assessment framework.
In addition to having to cope with dramatic changes in their expectation and lifestyles, parents of children with complex health needs have to learn how to access the necessary services for the child and themselves. This can be very confusing. Indeed one of the frequent complaints of families in this situation is how difficult it is to know what support is available and how to get it. They may be known to many services including health, social services, social security and education and aspects of their needs may be assessed many times but families can be left waiting too long for services they desperately need. A strategy to address repeated assessment and uncoordinated care is to use a common assessment framework and nominate a single person with the role of coordinating care. In the UK this is called a key worker; in North America ‘service coordinator’ is used. The key tasks of this role are: Providing information and advice. Families want this to be relevant and timely at significant points in their child’s life and development Identifying and addressing needs. In the UK the Framework for the Assessment of Children in Need was developed to identify needs and is a useful starting point (see Figure 1) Accessing and coordinating services for the family Providing emotional support Acting as an advocate The National Service Framework summarized the evidence on key working as ‘studies of key workers consistently report positive effects on relationships with services, fewer unmet needs and greater family wellbeing’ and over time more key working projects have emerged across the country. A second important development in care coordination for children with complex health needs are Integrated Care pathways. The Association for Children’s Palliative Care (ACT) has produced care pathway templates including a neonatal pathway for babies with palliative care needs, integrated multi-agency care pathways for children with life-threatening and life-limiting conditions, a family companion to the ACT Care Pathway and a Transition Care Pathway.
The Neonatal Pathway for Babies with Palliative Care Needs has been developed primarily to help support professionals working in maternity, obstetric and neonatal units who care for babies with life-threatening or life-limiting conditions. It aims to encourage practitioners and commissioners to ensure that the appropriate care is available in the right place, at the right time for each of these babies. The Integrated Multi-agency Care Pathways for Children with life-threatening and life-limiting conditions provides a framework to develop dedicated pathways for children with palliative care needs. It identifies the common needs families have caring for a child with a life-limiting condition and presents a pathway to engage with these needs. It will help ensure that all the necessary people and equipment are in place, so that families can access the appropriate support when it is needed. In 2004 a special issue of Child: care, health and development was dedicated to supporting children with complex health needs in the community. The issue contains an article written by the parents of Andrew, a boy who died from Neimann Pick Disease, which describes their personal experience and what families want from services. ACT has developed a family companion to guide families through the complex and often confusing processes that take place following diagnosis. The Family Companion explains what they should expect at each of the five key stages of the ACT Care Pathway: Breaking news Planning for going home Multi-agency assessment of a family’s needs A multi-agency care plan End of life plan The range of people who may be involved with a child with complex health needs in the community is illustrated in Figure 2. This emphasizes the importance of a key worker. A new classification system called the International Classification of Functioning, Disability and Health (Children and Youth Version) or ICFCY was published by the World Health Organization in 2007. This conceptualizes disability and health as
PAEDIATRICS AND CHILD HEALTH 22:5
194
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
Figure 2 Key services in the team around the child.
dynamic processes and bridges the social and medical models of disability in a biopsychosocial model. ICFCY has three domains; body structure and function, activity and participation and research has demonstrated that interventions for children with cerebral palsy that promote participation are as effective in promoting wellbeing as medical interventions to correct the body structure or function problems. This tool will change the way we develop services for children with complex health needs.
educational needs which funds either their special school placement or provides financial support to a mainstream school to meet the child’s needs. This budget to the school is usually spent on teaching assistants who work with the child for some or all of the school day. Some children have residential school placements and for others home schooling is provided. This is another complex process that families can find frustrating. Sometimes moving to an assessment of special educational needs needs evidence of the impact of interventions offered by the school at school action and other agencies (such as speech and language therapy or educational psychology) at school action plus and so time is necessarily spent at these earlier stages, though if a child’s situation has changed quickly these processes can be bypassed. There is support for families from Parent Partnership, a service provided by each local authority area but delivered by families of children with special educational needs.
Education advice There is a universal entitlement to education and the government has a policy of inclusion meaning that some children with complex health needs are included into mainstream school. The Disability Discrimination Act applies to educational establishments and adaptations should be provided to facilitate access for these children. Parents usually have a choice of educational provision and special schools are available for children with a variety of needs including sensory impairments, physical disabilities and severe and profound learning difficulties. The government is consulting on changes to special educational needs provision at present, but currently there is a staged response to children’s educational needs; school action, school action plus, assessment of special educational needs and provision of a statement of special educational needs. Most children with complex health needs will have a statement of special
PAEDIATRICS AND CHILD HEALTH 22:5
Social support It is clear that having a child with complex health needs may bring financial costs; many parents are not able to combine caring for their child with paid employment and outgoings may be increased by travel to appointments and purchasing equipment. Social support of families who are carers struggles to keep up with medical advances and the benefit system does not fully compensate parents for loss of income; families should be
195
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
encouraged to apply for benefits, many do not know they are entitled to the support. Disability Living Allowance is a tax-free benefit for disabled children to help with extra costs. Children are entitled if they have a physical or mental disability and needs a lot more help or supervision than other children of the same age. Parents can claim for care needs before a child is aged 3 months but benefit will not be paid before 3 months unless the child is terminally ill. Mobility needs can be claimed from 3 years of age if the child is unable, or virtually unable, to walk or would be at risk if they tried to walk. The Family Fund was established by the UK Government in 1973 to give practical help to families with severely disabled children under the age of 16. It is the largest independent grant-giving organization for families raising children with complex health needs. Families often apply for essential items such as washing machines, but young people aged 17 and under can be helped with grants for other needs such as equipment for college. In 2009e10, the Fund distributed £32.8 million to 55,000 families. Direct payments give families a budget to arrange care and services themselves. After an assessment, direct payments can be used to purchase services including; short breaks, specialist nursery placements or personal care. Being a parent and carer is not a routine nine-to-five, 5 days a week job but often 24 h a day every day. This on-going demand can lead to social isolation and prevents parents joining in ‘normal’ life. Access to respite or holidays is an important part of caring for the carers; there is insufficient respite care to meet demand. It comes in different forms; Short breaks provided by family and friends e viewed as flexible but parents worry about imposing on relatives. Access tends to diminish as children grow up. Short breaks provided by an agency (usually in the home) e allows parents to attend to household chores, shopping and socializing with the other children or partner. Overnight in home breaks e allows parents to have a break and the child to remain at home, prevents child from feeling like a burden. Respite facility placement e enables parents to rest and recover from the pressure of care and allows the rest of the family to engage in activities together.
The wish list of a young person with complex health needs
Box 1
moving to adulthood and independence. The transition care pathway developed by ACT provides a framework to help young people, families and professionals prepare in a carefully considered way for adult services. It emphasizes the importance of empowering young people to take control of their lives, and describes the need for an early collaboration of paediatric and adult services to improve transition. It includes a clear template; modelled around six standards, to guide through the transition process.
Interventions
Summary
There is a wide range of specific medical interventions that may benefit children with different complex health needs and this article does not describe these. Palliative care is a growing and important service for some children with complex health needs. There are e-learning modules based on the RCPCH curriculum that aim to equip practitioners and complement existing knowledge and skills in this area.
Real progress has been made in the care of children with complex health needs but much still needs to be done. Key working and coordinated and timely care is vital. Joint commissioning and care pathways are important developments. It is of first importance to listen to the children and families themselves to identify their priorities and needs. The wish list of one young person with complex health needs is shown in Box 1 and would be the best place to start to meet his needs. A
Transition Young people with complex health needs including many supported by medical technologies will survive into adulthood. They face many transitions, some occurring concurrently. As well as moving from childhood to adulthood, there are organizational and illness transitions and the transition from parental care to self care. It is clear that too often transition is focussed on service transition and transfer alone and not seen as part of the holistic process of
PAEDIATRICS AND CHILD HEALTH 22:5
FURTHER READING Association for Children’s Palliative Care (ACT) e http://www.act.org.uk/. Committee on Child Health Services. Fit for the future. London: HMSO, 1976. Department of Education and Skills and Department for Health. Together from the start e practical guidance for professional working with
196
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
disabled children (birth to 3rd birthday) and their families. London, UK: DfES and DoH, 2003. Department of Health. National service framework for children, young people and maternity services: disabled children and young people and those with complex health needs. London, UK: DoH, 2004. Department of Health. Better care: better lives. London, UK: DoH, 2008. Fauconnier J, Dickinson HO, Beckung E, et al. Participation in life situations of 8e12 year old children with cerebral palsy: cross sectional European study. Br Med J 2009; 338: b1458. HM Government. Every child matters, change for children. London, UK: HM Government, 2004. HM Treasury and Department for Education and Skills. Aiming high for disabled children: better support for families. London, UK: HM Treasury and DfES, 2007. Jardine E, Wallis C. Core guidelines for the discharge home of the child on long term ventilation in the United Kingdom. Thorax 1998; 53: 763e7.
PAEDIATRICS AND CHILD HEALTH 22:5
Kirk S. Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 2008; 34: 567e75. Lewis M. Establishing a service: a whole population approach. Child Care Health Dev 2004; 30: 221e9. Margolan H, Fraser J, Lenton S. Parental experience of services when their child requires long term ventilation. Implications for commissioning and providing services. Child Care Health Dev 2004; 30: 257e64. NHS West Midlands e-learning resource on paediatric palliative care e http://westmidlandspalliative.westmidlands.nhs.uk/. The NHS Confederation. Aiming high for disabled children: delivering improved health services. London, UK: The NHS Confederation, 2009. World Health Organisation. International classification of functioning, disability and health e children and youth. World Health Organisation, http://www.who.int/classifications/icf/en/; 2007. Contains public sector information licensed under the Open Government Licence v1.0.
197
Ó 2011 Published by Elsevier Ltd.
Community care of children with complex health needs
Learning objectives C
Douglas E Simkiss C
Abstract Children with complex health needs include children with disabilities, children with assisted technology and children with palliative care needs. Increasingly care for these children happens outside of hospital. Key issues are effective assessment without duplication and coordinated care involving multi-disciplinary and inter-agency teams. Joint commissioning, key working and integrated care pathways are important developments which, with a focus on listening to children and their families as they express their needs, are resulting in improved care. An understanding of the role of other practitioners and agencies is an essential component to good care for these children.
C
Other key policy initiatives include the Every Child Matters: change for children programme (2003) which aims to improve and integrate children’s services and Together from the Start which proposes ‘an identified worker or agency who would work with, advice, be a source of information and support to the family, facilitate more joined up working and alleviate some of the stress for families’. In 2008 the Department of Health published Better care: Better lives, a strategy for children with life-limiting and lifethreatening conditions including disabled children. The drive to improve care for children with complex health needs has seen £340 million in NHS allocations between 2008 and 2011 focussed on improving access to short breaks, community equipment, wheelchairs and children’s palliative care.
Keywords complex health needs; disabled children; life-limiting conditions; life-threatening conditions; palliative care
Introduction Historically paediatrics, like other clinical disciplines, has focussed on curative medicine. A professional emphasis on the care of children with long term disability, including children who are expected to die, has developed more recently. In 1976 the Committee on Child Health Services, chaired by Professor Donald Court, published ‘Fit For the Future’ a far-sighted report which proposed a move from care of children in hospital to care in the community. Many of the recommendations from ‘Fit for the Future’ were not initially welcomed by the medical profession, but over the decades since, almost all of them have been implemented. The report is still worth reading today. However, community care for children with complex health needs is still far from all that it could be and new recommendations emerge to strengthen the capacity of community services to meet the demand for care. Standard 8 in the National Service Framework for Children, Young People and Maternity Services is about Disabled children and young people and those with complex health needs. The document says that these children should receive treatment, care and support that match their needs, coordinated by the NHS and other agencies and which helps them and their families live as ordinary lives as possible. The standard has five themes: Services promote inclusion for disabled children Services for disabled children are easy to use Services are child-centred Services support and strengthen families Partnership with children and their parents or carers, and other agencies
Which children have complex health needs? One of the issues in this topic is definitions. There is no universally agreed definition of children with complex health needs but it includes three overlapping groups; children with disabilities, children with assisted technology and children with palliative care needs. Clearly, an individual child could simultaneously, or over a period of time, be in two or all three of these groups. One good working definition is ‘children with on-going healthcare needs related to the use of medical technology and who require the support of a range of professionals and agencies’. The medical technology includes home ventilation, tracheostomy and home oxygen, nasogastric feeding or gastrostomy with enteral nutrition, parenteral nutrition, ambulatory peritoneal dialysis and home renal dialysis. The list continues to expand because of technological advances in diagnosis, suitable equipment for use at home and improved outcomes from critical illnesses. But issues with agreement to funding, equipment costs, organizing home care support, respite and education continue to commonly cause delay in discharge planning from hospital. The emphasis on multi-disciplinary teams and inter-agency working is important and the government guidance is intended to encourage health, education and social care to collectively commission and provide services for children whose needs are greater than the provision available in one service. The Children Act 2004 required every local authority to appoint a commissioner of children’s services and a board (Children’s Trusts) to coordinate and commission local children’s services. Other terms that need defining are ‘life-limiting conditions’ e diseases where there is no reasonable hope of cure and from
Douglas E Simkiss FRCP (Ed) FRCPCH FHEA is Associate Professor of Child Health in the Division of Mental Health and Wellbeing, Warwick Medical School, University of Warwick, Coventry, UK. Conflict of interest: none.
PAEDIATRICS AND CHILD HEALTH 22:5
‘children with complex health needs’ is an imprecise term but includes children with disability, life-threatening and life-limiting conditions there is a network of support for these children and their families outside of hospital across the health, education, social work and voluntary sectors. To work best, this support has to be coordinated by a key worker listening to the wishes of the child and family integrated care pathways are a tool to facilitate care for these children and their families
193
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
which children or young people will die and ‘life-threatening conditions’ in which curative treatment may be feasible but can fail, such as cancer. Children with these conditions often have complex healthcare needs.
ED NE NT AL
LO PM E
VE
DE
CI
Stimulation
CH
TY
’S
PA
CHILD Safeguarding and promoting welfare
CA
ILD
Guidance and boundaries
G
Selfcare skills
Emotional warmth
IN
Social presentation
NT
Identity Family and social relationships
Because of the imprecise definition, it is perhaps not surprising that there are not clear statistics on the number of children with complex care needs. The Lifetime project in Bath defined a non malignant life-threatening or life-limiting condition as ‘any condition developed in childhood (before the age of 19 years) whereby the child is likely to die prematurely (before the age of 40 years), or any condition developed in childhood that, without major intervention, will cause the child to die prematurely’. Using this definition, there was a prevalence of 1.28/1000 (0e19 year olds) in that district and a prevalence of malignant disease under treatment of 0.65/1000 children and young people. This is an important group of children in need.
RE
Epidemiology
Ensuring safety PA
Emotional and behavioural development
Basic care
S
Health Education
Stability
FAMILY AND ENVIRONMENTAL FACTORS y or ng s t ni hi t io il y c m f un Fa nd ly a mi fa er id W g in u s ent Ho m oy pl Em e l ia m oc co In ’s s n o il y t i m ra Fa teg in i t y un m es m urc Co s o re
Needs based assessments and care coordination
Figure 1 The common assessment framework.
In addition to having to cope with dramatic changes in their expectation and lifestyles, parents of children with complex health needs have to learn how to access the necessary services for the child and themselves. This can be very confusing. Indeed one of the frequent complaints of families in this situation is how difficult it is to know what support is available and how to get it. They may be known to many services including health, social services, social security and education and aspects of their needs may be assessed many times but families can be left waiting too long for services they desperately need. A strategy to address repeated assessment and uncoordinated care is to use a common assessment framework and nominate a single person with the role of coordinating care. In the UK this is called a key worker; in North America ‘service coordinator’ is used. The key tasks of this role are: Providing information and advice. Families want this to be relevant and timely at significant points in their child’s life and development Identifying and addressing needs. In the UK the Framework for the Assessment of Children in Need was developed to identify needs and is a useful starting point (see Figure 1) Accessing and coordinating services for the family Providing emotional support Acting as an advocate The National Service Framework summarized the evidence on key working as ‘studies of key workers consistently report positive effects on relationships with services, fewer unmet needs and greater family wellbeing’ and over time more key working projects have emerged across the country. A second important development in care coordination for children with complex health needs are Integrated Care pathways. The Association for Children’s Palliative Care (ACT) has produced care pathway templates including a neonatal pathway for babies with palliative care needs, integrated multi-agency care pathways for children with life-threatening and life-limiting conditions, a family companion to the ACT Care Pathway and a Transition Care Pathway.
The Neonatal Pathway for Babies with Palliative Care Needs has been developed primarily to help support professionals working in maternity, obstetric and neonatal units who care for babies with life-threatening or life-limiting conditions. It aims to encourage practitioners and commissioners to ensure that the appropriate care is available in the right place, at the right time for each of these babies. The Integrated Multi-agency Care Pathways for Children with life-threatening and life-limiting conditions provides a framework to develop dedicated pathways for children with palliative care needs. It identifies the common needs families have caring for a child with a life-limiting condition and presents a pathway to engage with these needs. It will help ensure that all the necessary people and equipment are in place, so that families can access the appropriate support when it is needed. In 2004 a special issue of Child: care, health and development was dedicated to supporting children with complex health needs in the community. The issue contains an article written by the parents of Andrew, a boy who died from Neimann Pick Disease, which describes their personal experience and what families want from services. ACT has developed a family companion to guide families through the complex and often confusing processes that take place following diagnosis. The Family Companion explains what they should expect at each of the five key stages of the ACT Care Pathway: Breaking news Planning for going home Multi-agency assessment of a family’s needs A multi-agency care plan End of life plan The range of people who may be involved with a child with complex health needs in the community is illustrated in Figure 2. This emphasizes the importance of a key worker. A new classification system called the International Classification of Functioning, Disability and Health (Children and Youth Version) or ICFCY was published by the World Health Organization in 2007. This conceptualizes disability and health as
PAEDIATRICS AND CHILD HEALTH 22:5
194
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
Figure 2 Key services in the team around the child.
dynamic processes and bridges the social and medical models of disability in a biopsychosocial model. ICFCY has three domains; body structure and function, activity and participation and research has demonstrated that interventions for children with cerebral palsy that promote participation are as effective in promoting wellbeing as medical interventions to correct the body structure or function problems. This tool will change the way we develop services for children with complex health needs.
educational needs which funds either their special school placement or provides financial support to a mainstream school to meet the child’s needs. This budget to the school is usually spent on teaching assistants who work with the child for some or all of the school day. Some children have residential school placements and for others home schooling is provided. This is another complex process that families can find frustrating. Sometimes moving to an assessment of special educational needs needs evidence of the impact of interventions offered by the school at school action and other agencies (such as speech and language therapy or educational psychology) at school action plus and so time is necessarily spent at these earlier stages, though if a child’s situation has changed quickly these processes can be bypassed. There is support for families from Parent Partnership, a service provided by each local authority area but delivered by families of children with special educational needs.
Education advice There is a universal entitlement to education and the government has a policy of inclusion meaning that some children with complex health needs are included into mainstream school. The Disability Discrimination Act applies to educational establishments and adaptations should be provided to facilitate access for these children. Parents usually have a choice of educational provision and special schools are available for children with a variety of needs including sensory impairments, physical disabilities and severe and profound learning difficulties. The government is consulting on changes to special educational needs provision at present, but currently there is a staged response to children’s educational needs; school action, school action plus, assessment of special educational needs and provision of a statement of special educational needs. Most children with complex health needs will have a statement of special
PAEDIATRICS AND CHILD HEALTH 22:5
Social support It is clear that having a child with complex health needs may bring financial costs; many parents are not able to combine caring for their child with paid employment and outgoings may be increased by travel to appointments and purchasing equipment. Social support of families who are carers struggles to keep up with medical advances and the benefit system does not fully compensate parents for loss of income; families should be
195
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
encouraged to apply for benefits, many do not know they are entitled to the support. Disability Living Allowance is a tax-free benefit for disabled children to help with extra costs. Children are entitled if they have a physical or mental disability and needs a lot more help or supervision than other children of the same age. Parents can claim for care needs before a child is aged 3 months but benefit will not be paid before 3 months unless the child is terminally ill. Mobility needs can be claimed from 3 years of age if the child is unable, or virtually unable, to walk or would be at risk if they tried to walk. The Family Fund was established by the UK Government in 1973 to give practical help to families with severely disabled children under the age of 16. It is the largest independent grant-giving organization for families raising children with complex health needs. Families often apply for essential items such as washing machines, but young people aged 17 and under can be helped with grants for other needs such as equipment for college. In 2009e10, the Fund distributed £32.8 million to 55,000 families. Direct payments give families a budget to arrange care and services themselves. After an assessment, direct payments can be used to purchase services including; short breaks, specialist nursery placements or personal care. Being a parent and carer is not a routine nine-to-five, 5 days a week job but often 24 h a day every day. This on-going demand can lead to social isolation and prevents parents joining in ‘normal’ life. Access to respite or holidays is an important part of caring for the carers; there is insufficient respite care to meet demand. It comes in different forms; Short breaks provided by family and friends e viewed as flexible but parents worry about imposing on relatives. Access tends to diminish as children grow up. Short breaks provided by an agency (usually in the home) e allows parents to attend to household chores, shopping and socializing with the other children or partner. Overnight in home breaks e allows parents to have a break and the child to remain at home, prevents child from feeling like a burden. Respite facility placement e enables parents to rest and recover from the pressure of care and allows the rest of the family to engage in activities together.
The wish list of a young person with complex health needs
Box 1
moving to adulthood and independence. The transition care pathway developed by ACT provides a framework to help young people, families and professionals prepare in a carefully considered way for adult services. It emphasizes the importance of empowering young people to take control of their lives, and describes the need for an early collaboration of paediatric and adult services to improve transition. It includes a clear template; modelled around six standards, to guide through the transition process.
Interventions
Summary
There is a wide range of specific medical interventions that may benefit children with different complex health needs and this article does not describe these. Palliative care is a growing and important service for some children with complex health needs. There are e-learning modules based on the RCPCH curriculum that aim to equip practitioners and complement existing knowledge and skills in this area.
Real progress has been made in the care of children with complex health needs but much still needs to be done. Key working and coordinated and timely care is vital. Joint commissioning and care pathways are important developments. It is of first importance to listen to the children and families themselves to identify their priorities and needs. The wish list of one young person with complex health needs is shown in Box 1 and would be the best place to start to meet his needs. A
Transition Young people with complex health needs including many supported by medical technologies will survive into adulthood. They face many transitions, some occurring concurrently. As well as moving from childhood to adulthood, there are organizational and illness transitions and the transition from parental care to self care. It is clear that too often transition is focussed on service transition and transfer alone and not seen as part of the holistic process of
PAEDIATRICS AND CHILD HEALTH 22:5
FURTHER READING Association for Children’s Palliative Care (ACT) e http://www.act.org.uk/. Committee on Child Health Services. Fit for the future. London: HMSO, 1976. Department of Education and Skills and Department for Health. Together from the start e practical guidance for professional working with
196
Ó 2011 Published by Elsevier Ltd.
SYMPOSIUM: SOCIAL PAEDIATRICS
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