Improving services for disabled children and their families Professor Alan Glasper and Kath Evans, Head of Patient Experience, NHS England, discuss two new reports from the charity, Contact a Family, which raises awareness of the experiences of parents of children with disabilities, and how families can engage better with health services
What’s in a name? The origin of the charity’s name is rooted in one of its early activities, which was to put the families of children with specific types of disabilities and medical conditions in touch with other similar families. This activity has led to the creation of specific mutual support groups or forums. Contact a Family, which works in partnership with the National Network of Parent Carer Forums (NNPCF), seeks to influence services, and has developed campaigns that aim to improve quality of life for families with disabled children. Importantly, the statistics cited by the charity reveal that 1 in 20 children (5%) in the UK are born with a disability (Contact a Family, 2013). The charity has a vision to empower families with disabled children so that they are enabled to live the lives they want and achieve their full potential—both for themselves and for the communities they live in. To achieve this vision, the charity offers support, information and advice to over 340 000 families each year, and campaigns on all fronts to ensure that these families receive all the help and support they are entitled to. Contact a Family is deeply committed to ending the poverty, disadvantage and isolation experienced by families with disabled children across the UK. Two new reports from Contact a Family were published in March 2014: Parent Carer Forum Involvement in Shaping Health Services (Contact a Family, 2014a) is designed to provide parent carer forums with information
600
in light of the 2013 changes to health and social services. It also encourages parents to make contact and work with their local Healthwatch, clinical commissioning groups (CCGs) and Health and Wellbeing boards. Sharing Good Practice: Parent Participation in Health Settings: Improving Services for Disabled Children (Contact a Family, 2014b) is designed to illuminate how children with disabilities and their carers can be best involved and consulted to inform the planning and development of services. Both reports are aimed at giving children and young people with disabilities a higher profile in society, but especially health and social-care services.
Parent Carer Forum Involvement The focus of this policy report is to showcase examples of successful ventures that support parent carer forums in becoming more involved in influencing how health services are delivered. It also reports on parent carer forums’ involvement with CCGs, Healthwatch and Health and Wellbeing boards (Contact a Family, 2011). The report describes how NNPCF, founded in 2011, has been developed. This network provides a mechanism to reflect the experiences of parents of disabled children in parent carer forums across England at a regional and national level. Contact a Family has been mandated to act as the delivery partner for the Department for Education to support parent carer participation in England, working in partnership with the NNPCF. To this end, Contact a Family was given funding from April 2011 to March 2014 through the 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 the use of survey questionnaires, which were sent out to parent carer forums in July 2011, October 2012 and January 2014.
These questionnaires asked the forums about their involvement with health services and with whom they were working. The results show that more forums across England are working with health services to improve the way services are delivered to disabled children than at the start of the project. The report shows that 86% of parent carer forums responding to the survey were actively involved in shaping health services, and many are involved in more than one setting. Yet, in some areas, parent carer forums are still struggling to find out whom to contact and work with when their members raise issues about specific services. However, with regard to CCGs, the report shows that sometimes forums find it difficult to get CCGs to engage with them about services, which parents see as a priority. This is exacerbated when CCGs hold consultation meetings at times that are difficult for forum members to attend, such as during ‘school runs’ and school holidays. Importantly, this report shows that a significant number of parent carer forums that have made contact with their local Healthwatch are not able to build a relationship with them, or feel confident that Healthwatch will be able to support their work. With regard to how forums representing disabled children and their families influence Health and Wellbeing boards (which are forums where key leaders from the health and care system work together to improve the health and wellbeing of their local population and reduce health inequalities) this report suggests that they are well-positioned to try to get disabled children on the agenda.
Sharing Good Practice This second report from Contact a Family is designed to enhance the ways in which families of disabled children are enabled to contribute to the planning and development of services. The publication cites a range of case studies, which illustrate the different ways in which parent carers have helped bring
© 2014 MA Healthcare Ltd
F
ounded in 1979, the charity Contact a Family is dedicated to providing advice, information and support to the parents of disabled children across the whole of the UK. The charity helps professionals who work with the families of children with disabilities. It is also part of the consortium that makes up Every Disabled Child Matters (EDCM), a national campaign that is leading the initiative to develop rights and justice for disabled children.
British Journal of Nursing, 2014, Vol 23, No 11
British Journal of Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights reserved.
HEALTHCARE POLICY about improvements to the way services are provided to disabled children.
Working with hospitals The report gives a range of exemplars, which show the steps taken by individual hospitals to improve care standards for children with disabilities. This is important— Ilkhani et al (2012) have shown that there are some aspects of child policy standards that need more careful consideration, such as communication, equipment, training and delivery of information. Innovative work has been undertaken at Manchester Children’s Hospital, for example, which has positively changed the way in which staff work with children with autism. The hospital developed a communication ‘Dos and Don’ts’ list to enable care staff to communicate with this group of disabled children more effectively. Similarly, Birmingham Children’s Hospital worked with the parents of children with disabilities to develop a hospital passport for parents to fill in, which alerts hospital staff about what might upset the individual child during hospital admission.
Working in community settings The report also shows innovation in care from a community perspective and gives good examples of how Child and Adolescent Mental Health Services (CAMHS) in Kirklees, Yorkshire, have worked with parents to design a new CAMHS learning disability service. This new parent participation service focuses on the child’s holistic needs, working in partnership with the child or young person and their families and carers. Similarly, a scheme in Hull is showcased by the report. In this exemplar, the local clinical commissioning group engaged with a parent carer forum to help resolve issues related to sleep deprivation among children with autism, attention deficit hyperactivity disorder (ADHD) and epilepsy.
Working with GP practices
© 2014 MA Healthcare Ltd
This part of the report cites a number of innovative changes made by GPs after family participation. For example, in Rutland, one GP practice was able to implement a fast-tracking process for children and young people with autism. Additionally, GPs were able to attend learning-disability and autism training.
Co-production in developing integrated services This final aspect of the report shows how parent participation by families of disabled children can be harnessed to make fundamental
British Journal of Nursing, 2014, Vol 23, No 11
improvements to the development of integrated services for children with disabilities. One of the cited examples, Hampshire County Council, commissioned a Children’s Therapies Programme Board, which was designed to understand better what the problems were, as perceived by members of a parent carer forum. The Hampshire Parent Carer Network was invited to sit on this board, along with therapists and two GP leads for children with disabilities from the CCGs. This participation process has resulted in a new multidisciplinary therapy service that has been commissioned for the whole of Hampshire.
Conclusion Every Disabled Child Matters (EDCM) is a national campaign, which is leading the initiative to develop rights and justice for disabled children. Contact a Family is part of EDCM. Its latest publications deserve to be read by nurses because disabled children and young people often experience significant barriers to accessing services, which results in poor health outcomes. Carpenter and McConkey (2012) underscore this fact by highlighting that disability generates moral and ethical challenges to society and particularly to professional services, where care may be compromised when resources are scarce. The Association of Chief Children’s Nurses (ACCN) is a group of senior nurses representing children’s and young people’s services. They have developed a specific audit tool to allow nurses and others to measure compliance by children’s hospital units to contemporary healthcare standards for children with disabilities. 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. It was perhaps Charles Dickens, in his novella A Christmas Carol (1843), who first raised awareness of the plight of children with disabilities through the character Tiny Tim (who, in retrospect, may have been suffering from rickets, as he is pictured using a crutch in the story). Up until that time, children with complex disabilities had been poorly served by society. Today, in 2014, NHS providers of services and those who deliver care to disabled children, in particular those children with complex needs, must measure and demonstrate the effectiveness of the BJN services they are providing. For more information on Contact a Family, visit http://www.cafamily.org.uk/ Carpenter J and McConkey R (2012) Disabled Children’s Voices: The Nature and Role of Future Empirical Enquiry. Children Soc 26(3): 251–61 Contact a Family (2011) Parent Carer Forum Involvement in Shaping Health Services. http://www.cafamily.org. uk/media/392631/reports_and_research_report_ into_parent_carer_forums_experiences_of_working_ with_health_nhs_2012.pdf (accessed 2 June 2014) Contact a Family (2013) The Difference We Made: Our Annual Review 2012–13. http://www.cafamily. org.uk/media/645376/contact_a_family_annual_ review_2012.pdf (accessed 2 June 2014) Contact a Family (2014a) Parent Carer Forum Involvement in Shaping Health Services. http://www.cafamily.org. uk/media/769034/research_and_reports_parent_ carer_for um_invovement_in_shaping_health_ services.pdf (accessed 2 June 2014) Contact a Family (2014b) Sharing Good Practice: Parent Participation in Health Settings: Improving Services for Disabled Children. http://www.cafamily.org.uk/ media/769001/parent_carer_participation_sharing_ good_practice__in_health_settings.pdf (accessed 2 June 2014) Ilkhani M, Battrick C, Glasper A, Jarrett N (2012) Are the children’s and young people’s units disabled friendly? A preliminary inquiry. Working Papers Health Sci 1(1): 1–9 http://eprints.soton.ac.uk/345281/ (accessed 2 June 2014)
KEY POINTS n The charity Contact a Family has published two new reports that seek to raise awareness of the experiences of parents of children with disabilities n Statistics cited by the charity reveal that 1 in 20 children (5%) in the UK are born with a disability n Disabled children and young people often experience significant barriers to accessing services, which results in poor health outcomes n Both reports are aimed at giving children and young people with disabilities a higher profile in society, but especially in health and social-care services n Every Disabled Child Matters (EDCM) is a national campaign that is leading the initiative to develop rights and justice for disabled children
601
British Journal of Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights reserved.
What’s in a name? The origin of the charity’s name is rooted in one of its early activities, which was to put the families of children with specific types of disabilities and medical conditions in touch with other similar families. This activity has led to the creation of specific mutual support groups or forums. Contact a Family, which works in partnership with the National Network of Parent Carer Forums (NNPCF), seeks to influence services, and has developed campaigns that aim to improve quality of life for families with disabled children. Importantly, the statistics cited by the charity reveal that 1 in 20 children (5%) in the UK are born with a disability (Contact a Family, 2013). The charity has a vision to empower families with disabled children so that they are enabled to live the lives they want and achieve their full potential—both for themselves and for the communities they live in. To achieve this vision, the charity offers support, information and advice to over 340 000 families each year, and campaigns on all fronts to ensure that these families receive all the help and support they are entitled to. Contact a Family is deeply committed to ending the poverty, disadvantage and isolation experienced by families with disabled children across the UK. Two new reports from Contact a Family were published in March 2014: Parent Carer Forum Involvement in Shaping Health Services (Contact a Family, 2014a) is designed to provide parent carer forums with information
600
in light of the 2013 changes to health and social services. It also encourages parents to make contact and work with their local Healthwatch, clinical commissioning groups (CCGs) and Health and Wellbeing boards. Sharing Good Practice: Parent Participation in Health Settings: Improving Services for Disabled Children (Contact a Family, 2014b) is designed to illuminate how children with disabilities and their carers can be best involved and consulted to inform the planning and development of services. Both reports are aimed at giving children and young people with disabilities a higher profile in society, but especially health and social-care services.
Parent Carer Forum Involvement The focus of this policy report is to showcase examples of successful ventures that support parent carer forums in becoming more involved in influencing how health services are delivered. It also reports on parent carer forums’ involvement with CCGs, Healthwatch and Health and Wellbeing boards (Contact a Family, 2011). The report describes how NNPCF, founded in 2011, has been developed. This network provides a mechanism to reflect the experiences of parents of disabled children in parent carer forums across England at a regional and national level. Contact a Family has been mandated to act as the delivery partner for the Department for Education to support parent carer participation in England, working in partnership with the NNPCF. To this end, Contact a Family was given funding from April 2011 to March 2014 through the 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 the use of survey questionnaires, which were sent out to parent carer forums in July 2011, October 2012 and January 2014.
These questionnaires asked the forums about their involvement with health services and with whom they were working. The results show that more forums across England are working with health services to improve the way services are delivered to disabled children than at the start of the project. The report shows that 86% of parent carer forums responding to the survey were actively involved in shaping health services, and many are involved in more than one setting. Yet, in some areas, parent carer forums are still struggling to find out whom to contact and work with when their members raise issues about specific services. However, with regard to CCGs, the report shows that sometimes forums find it difficult to get CCGs to engage with them about services, which parents see as a priority. This is exacerbated when CCGs hold consultation meetings at times that are difficult for forum members to attend, such as during ‘school runs’ and school holidays. Importantly, this report shows that a significant number of parent carer forums that have made contact with their local Healthwatch are not able to build a relationship with them, or feel confident that Healthwatch will be able to support their work. With regard to how forums representing disabled children and their families influence Health and Wellbeing boards (which are forums where key leaders from the health and care system work together to improve the health and wellbeing of their local population and reduce health inequalities) this report suggests that they are well-positioned to try to get disabled children on the agenda.
Sharing Good Practice This second report from Contact a Family is designed to enhance the ways in which families of disabled children are enabled to contribute to the planning and development of services. The publication cites a range of case studies, which illustrate the different ways in which parent carers have helped bring
© 2014 MA Healthcare Ltd
F
ounded in 1979, the charity Contact a Family is dedicated to providing advice, information and support to the parents of disabled children across the whole of the UK. The charity helps professionals who work with the families of children with disabilities. It is also part of the consortium that makes up Every Disabled Child Matters (EDCM), a national campaign that is leading the initiative to develop rights and justice for disabled children.
British Journal of Nursing, 2014, Vol 23, No 11
British Journal of Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights reserved.
HEALTHCARE POLICY about improvements to the way services are provided to disabled children.
Working with hospitals The report gives a range of exemplars, which show the steps taken by individual hospitals to improve care standards for children with disabilities. This is important— Ilkhani et al (2012) have shown that there are some aspects of child policy standards that need more careful consideration, such as communication, equipment, training and delivery of information. Innovative work has been undertaken at Manchester Children’s Hospital, for example, which has positively changed the way in which staff work with children with autism. The hospital developed a communication ‘Dos and Don’ts’ list to enable care staff to communicate with this group of disabled children more effectively. Similarly, Birmingham Children’s Hospital worked with the parents of children with disabilities to develop a hospital passport for parents to fill in, which alerts hospital staff about what might upset the individual child during hospital admission.
Working in community settings The report also shows innovation in care from a community perspective and gives good examples of how Child and Adolescent Mental Health Services (CAMHS) in Kirklees, Yorkshire, have worked with parents to design a new CAMHS learning disability service. This new parent participation service focuses on the child’s holistic needs, working in partnership with the child or young person and their families and carers. Similarly, a scheme in Hull is showcased by the report. In this exemplar, the local clinical commissioning group engaged with a parent carer forum to help resolve issues related to sleep deprivation among children with autism, attention deficit hyperactivity disorder (ADHD) and epilepsy.
Working with GP practices
© 2014 MA Healthcare Ltd
This part of the report cites a number of innovative changes made by GPs after family participation. For example, in Rutland, one GP practice was able to implement a fast-tracking process for children and young people with autism. Additionally, GPs were able to attend learning-disability and autism training.
Co-production in developing integrated services This final aspect of the report shows how parent participation by families of disabled children can be harnessed to make fundamental
British Journal of Nursing, 2014, Vol 23, No 11
improvements to the development of integrated services for children with disabilities. One of the cited examples, Hampshire County Council, commissioned a Children’s Therapies Programme Board, which was designed to understand better what the problems were, as perceived by members of a parent carer forum. The Hampshire Parent Carer Network was invited to sit on this board, along with therapists and two GP leads for children with disabilities from the CCGs. This participation process has resulted in a new multidisciplinary therapy service that has been commissioned for the whole of Hampshire.
Conclusion Every Disabled Child Matters (EDCM) is a national campaign, which is leading the initiative to develop rights and justice for disabled children. Contact a Family is part of EDCM. Its latest publications deserve to be read by nurses because disabled children and young people often experience significant barriers to accessing services, which results in poor health outcomes. Carpenter and McConkey (2012) underscore this fact by highlighting that disability generates moral and ethical challenges to society and particularly to professional services, where care may be compromised when resources are scarce. The Association of Chief Children’s Nurses (ACCN) is a group of senior nurses representing children’s and young people’s services. They have developed a specific audit tool to allow nurses and others to measure compliance by children’s hospital units to contemporary healthcare standards for children with disabilities. 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. It was perhaps Charles Dickens, in his novella A Christmas Carol (1843), who first raised awareness of the plight of children with disabilities through the character Tiny Tim (who, in retrospect, may have been suffering from rickets, as he is pictured using a crutch in the story). Up until that time, children with complex disabilities had been poorly served by society. Today, in 2014, NHS providers of services and those who deliver care to disabled children, in particular those children with complex needs, must measure and demonstrate the effectiveness of the BJN services they are providing. For more information on Contact a Family, visit http://www.cafamily.org.uk/ Carpenter J and McConkey R (2012) Disabled Children’s Voices: The Nature and Role of Future Empirical Enquiry. Children Soc 26(3): 251–61 Contact a Family (2011) Parent Carer Forum Involvement in Shaping Health Services. http://www.cafamily.org. uk/media/392631/reports_and_research_report_ into_parent_carer_forums_experiences_of_working_ with_health_nhs_2012.pdf (accessed 2 June 2014) Contact a Family (2013) The Difference We Made: Our Annual Review 2012–13. http://www.cafamily. org.uk/media/645376/contact_a_family_annual_ review_2012.pdf (accessed 2 June 2014) Contact a Family (2014a) Parent Carer Forum Involvement in Shaping Health Services. http://www.cafamily.org. uk/media/769034/research_and_reports_parent_ carer_for um_invovement_in_shaping_health_ services.pdf (accessed 2 June 2014) Contact a Family (2014b) Sharing Good Practice: Parent Participation in Health Settings: Improving Services for Disabled Children. http://www.cafamily.org.uk/ media/769001/parent_carer_participation_sharing_ good_practice__in_health_settings.pdf (accessed 2 June 2014) Ilkhani M, Battrick C, Glasper A, Jarrett N (2012) Are the children’s and young people’s units disabled friendly? A preliminary inquiry. Working Papers Health Sci 1(1): 1–9 http://eprints.soton.ac.uk/345281/ (accessed 2 June 2014)
KEY POINTS n The charity Contact a Family has published two new reports that seek to raise awareness of the experiences of parents of children with disabilities n Statistics cited by the charity reveal that 1 in 20 children (5%) in the UK are born with a disability n Disabled children and young people often experience significant barriers to accessing services, which results in poor health outcomes n Both reports are aimed at giving children and young people with disabilities a higher profile in society, but especially in health and social-care services n Every Disabled Child Matters (EDCM) is a national campaign that is leading the initiative to develop rights and justice for disabled children
601
British Journal of Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights reserved.
![[Services for disabled children: epidemiological aspects].](/assets/img/hold.png)
