Issues in Comprehensive Pediatric Nursing, 2014; 37(4): 199–202 ß Informa Healthcare USA, Inc. ISSN: 0146-0862 print / 1521-043X online DOI: 10.3109/01460862.2014.938962
EDITORIAL: HELPING CHILDREN WITH DISABILITIES RECEIVE OPTIMUM CARE
E.A. Glasper
INTRODUCTION In many countries, healthcare charities have been established to support the families of disabled children. For example, the Canadian charity, the Sunshine Foundation provides individual wish fulfillment to children with severe physical disabilities and approximately 50,000 children across Canada medically qualify for eligibility (http://www.sunshine.ca/ who-we-are). Similarly, in the UK a range of charities offers help and support to disabled children and their families. The charity Contact a Family, 199
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founded in 1979, is dedicated to providing advice, information, and support to the parents of disabled children across the whole of the UK. Furthermore, this charity helps professionals who work with families of children with disabilities. Originally, the charity aspired to put the families of children with specific types of disabilities and medical conditions in touch with other similar families and this in turn has led to the creation of specific mutual support groups or forums. Contact a Family now works in partnership with a National Network of Parent Carer Forums, which seeks to influence services for disabled children in England by campaigning to improve the quality of life for these families. Currently 5% of children in the UK are born with a disability (http:// www.cafamily.org.uk/). HOW CHARITIES CAN SUPPORT CHILDREN WITH DISABILITIES AND GET FAMILIES INVOLVED IN SHAPING HEALTH SERVICES The role of these types of charities is to help empower families with disabled children so that they are enabled to live the lives they want and achieve their full potential, for themselves and for the communities they live in. In the case of Contact a Family they offer support, information, and advice to over 340,000 families each year and campaign on all fronts to ensure they receive all the help and support they are entitled to in society. As with many such charities, Contact a Family is deeply committed to ending the poverty, disadvantage, and isolation experienced by families with disabled children across the UK. A recent report produced by Contact a Family in 2014 showcases exemplars of successful ventures that support parent carer forums in becoming more involved in influencing how health services are delivered (http://www.cafamily.org.uk/media/392631/reports_and_ research_report_into_parent_carer_forums_experiences_of_working_ with_health_nhs_2012.pdf). Contact a Family was given funding from April 2011 to March 2014 through the English Department of Health’s Innovation Excellence and Service Development Fund to support the involvement of parent carer forums in commissioning and improving local health services for disabled children. Data were collected by Contact a Family through survey questionnaires, which were sent to parent carer forums in July 2011, October 2012, and January 2014 asking about their involvement with health services and who they were working with. The results of these surveys show that more forums across England are working with health agencies to improve the way services are delivered to disabled children than at the start of the project. The report shows that 86% of
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parent carer forums responding to the survey were actively involved in shaping health services, and many are involved in more than one setting. However, in some areas parent carer forums are still struggling to find who to contact and work with when their members raise issues about specific services. Sometimes parent forums find it difficult to get professional health and social commissioning agencies to engage with them about services, which parents see as a priority. This is exacerbated when such agencies hold consultation meetings at times difficult for forum members to attend, such as during school runs and school holidays With regard to how parent forums representing disabled children and their families influence the assemblies where key leaders from the health and care systems work together to improve the health and well-being of their local population and reduce health inequalities, this report suggests they are well-positioned to try to get disabled children on the health agenda. CONCLUSION Every Disabled Child Matters (EDCM) is the English national campaign, which is leading the initiative to develop rights and justice for disabled children (http://www.edcm.org.uk/). Contact a Family is part of the consortium which makes up EDCM and this latest publication deserve to be read by children’s nurses everywhere because disabled children and young people often experience significant barriers to accessing services which results in poor health outcomes. Carpenter & McConkey (2012) underscore this by highlighting that disability generates moral and ethical challenges to society and particularly professional services, where care may be compromised when resources are scarce. Importantly the UK Association of Chief Children’s Nurses, which is a group of senior nurses representing children’s and young people services throughout the UK, have developed a specific audit tool to allow nurses and others to measure compliance by children’s hospital units to contemporary health care standards for children with disabilities (accnuk.org). A significant aspect of this audit tool seeks to measure how effectively parent participation and family involvement in the care of children with disabilities, is actually embedded in practice and whether such practice areas are disabled friendly (Ilkani et al., 2012). It was perhaps Charles Dickens in his novel A Christmas Carol, published in 1843 (http://www.stormfax.com/dickens.htm), who first raised the plight of children with disabilities through the character Tiny Tim, who may have been suffering from rickets as in the story he is pictured using a crutch. Until that time children with complex disabilities
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had been poorly served by society. Today, children’s nurses who deliver care to disabled children, in particular those with complex needs, must measure and demonstrate the effectiveness of the services they are providing. DECLARATION OF INTEREST The author declares no conflicts of interest. The author alone is responsible for the content and writing of the paper. REFERENCES Carpenter, J., & McConkey, R. (2012). Disabled children’s voices: The nature and role of future empirical enquiry. Children & Society, 26, 251–261. Ilkani, M., Battrick, C., Glasper, A., & Jarrett, N. (2012). Are the children’s and young people’s units disabled friendly? A preliminary inquiry. Working Papers in the Health Sciences, 1, 1–9.
Copyright of Issues in Comprehensive Pediatric Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
EDITORIAL: HELPING CHILDREN WITH DISABILITIES RECEIVE OPTIMUM CARE
E.A. Glasper
INTRODUCTION In many countries, healthcare charities have been established to support the families of disabled children. For example, the Canadian charity, the Sunshine Foundation provides individual wish fulfillment to children with severe physical disabilities and approximately 50,000 children across Canada medically qualify for eligibility (http://www.sunshine.ca/ who-we-are). Similarly, in the UK a range of charities offers help and support to disabled children and their families. The charity Contact a Family, 199
200
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founded in 1979, is dedicated to providing advice, information, and support to the parents of disabled children across the whole of the UK. Furthermore, this charity helps professionals who work with families of children with disabilities. Originally, the charity aspired to put the families of children with specific types of disabilities and medical conditions in touch with other similar families and this in turn has led to the creation of specific mutual support groups or forums. Contact a Family now works in partnership with a National Network of Parent Carer Forums, which seeks to influence services for disabled children in England by campaigning to improve the quality of life for these families. Currently 5% of children in the UK are born with a disability (http:// www.cafamily.org.uk/). HOW CHARITIES CAN SUPPORT CHILDREN WITH DISABILITIES AND GET FAMILIES INVOLVED IN SHAPING HEALTH SERVICES The role of these types of charities is to help empower families with disabled children so that they are enabled to live the lives they want and achieve their full potential, for themselves and for the communities they live in. In the case of Contact a Family they offer support, information, and advice to over 340,000 families each year and campaign on all fronts to ensure they receive all the help and support they are entitled to in society. As with many such charities, Contact a Family is deeply committed to ending the poverty, disadvantage, and isolation experienced by families with disabled children across the UK. A recent report produced by Contact a Family in 2014 showcases exemplars of successful ventures that support parent carer forums in becoming more involved in influencing how health services are delivered (http://www.cafamily.org.uk/media/392631/reports_and_ research_report_into_parent_carer_forums_experiences_of_working_ with_health_nhs_2012.pdf). Contact a Family was given funding from April 2011 to March 2014 through the English Department of Health’s Innovation Excellence and Service Development Fund to support the involvement of parent carer forums in commissioning and improving local health services for disabled children. Data were collected by Contact a Family through survey questionnaires, which were sent to parent carer forums in July 2011, October 2012, and January 2014 asking about their involvement with health services and who they were working with. The results of these surveys show that more forums across England are working with health agencies to improve the way services are delivered to disabled children than at the start of the project. The report shows that 86% of
Editorial
201
parent carer forums responding to the survey were actively involved in shaping health services, and many are involved in more than one setting. However, in some areas parent carer forums are still struggling to find who to contact and work with when their members raise issues about specific services. Sometimes parent forums find it difficult to get professional health and social commissioning agencies to engage with them about services, which parents see as a priority. This is exacerbated when such agencies hold consultation meetings at times difficult for forum members to attend, such as during school runs and school holidays With regard to how parent forums representing disabled children and their families influence the assemblies where key leaders from the health and care systems work together to improve the health and well-being of their local population and reduce health inequalities, this report suggests they are well-positioned to try to get disabled children on the health agenda. CONCLUSION Every Disabled Child Matters (EDCM) is the English national campaign, which is leading the initiative to develop rights and justice for disabled children (http://www.edcm.org.uk/). Contact a Family is part of the consortium which makes up EDCM and this latest publication deserve to be read by children’s nurses everywhere because disabled children and young people often experience significant barriers to accessing services which results in poor health outcomes. Carpenter & McConkey (2012) underscore this by highlighting that disability generates moral and ethical challenges to society and particularly professional services, where care may be compromised when resources are scarce. Importantly the UK Association of Chief Children’s Nurses, which is a group of senior nurses representing children’s and young people services throughout the UK, have developed a specific audit tool to allow nurses and others to measure compliance by children’s hospital units to contemporary health care standards for children with disabilities (accnuk.org). A significant aspect of this audit tool seeks to measure how effectively parent participation and family involvement in the care of children with disabilities, is actually embedded in practice and whether such practice areas are disabled friendly (Ilkani et al., 2012). It was perhaps Charles Dickens in his novel A Christmas Carol, published in 1843 (http://www.stormfax.com/dickens.htm), who first raised the plight of children with disabilities through the character Tiny Tim, who may have been suffering from rickets as in the story he is pictured using a crutch. Until that time children with complex disabilities
202
Editorial
had been poorly served by society. Today, children’s nurses who deliver care to disabled children, in particular those with complex needs, must measure and demonstrate the effectiveness of the services they are providing. DECLARATION OF INTEREST The author declares no conflicts of interest. The author alone is responsible for the content and writing of the paper. REFERENCES Carpenter, J., & McConkey, R. (2012). Disabled children’s voices: The nature and role of future empirical enquiry. Children & Society, 26, 251–261. Ilkani, M., Battrick, C., Glasper, A., & Jarrett, N. (2012). Are the children’s and young people’s units disabled friendly? A preliminary inquiry. Working Papers in the Health Sciences, 1, 1–9.
Copyright of Issues in Comprehensive Pediatric Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
