Patricia Sloper

Having a say in health: Involving young people with a chronic illness or physical disability in local health services development

Increasing attention is being paid to involving users in local NHS service development, and to involving young people as users in their own right. However, we know little about the views and experiences of young participants, especially those with a chronic illness or physical disability, which could inform more effective approaches to their involvement. The paper reports on research investigating the views of young patients and staff who have taken part in NHS service development projects, and suggests a range of issues for consideration when involving young patients in future. Copyright

Listening and Responding? Children's Participation in Health Care within England

This article examines recent health policy developments in England in relation to childrens rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research literature to explore evidence regarding: childrens participation both within decisions about their own care and concerning the development of health services, their access to mechanisms that allow them a voice, the provision of and need for accessible information, and factors which prevent or facilitate childrens participation. The paper does not explore in detail issues concerning childrens consent or competence to participate.

Key workers and schools: meeting the needs of children and young people with disabilities

Across the world countries are advocating the education of children and young people with disabilities in mainstream schools. There is also increasing interest in developing effective coordination of the specialist services pupils with disabilities receive from different agencies. This is accompanied by growing recognition that such care coordination can positively influence the experience of inclusion for children and their families. However, while the literature of care coordination generally includes education as a core provider, there is little evidence on involvement of education professionals and the outcomes for children and schools. These issues are addressed by the findings reported here on the role of key workers in care coordination and their relationship with schools. The findings draw on interviews with professionals from seven key worker services across England and Wales, parents and carers who were recipients of these services and teachers in schools serving children supported by key workers. These interviews are part of a wider multi‐method study exploring the effectiveness and costs of different models of key worker services for disabled children. The data reveal the range of education and school issues addressed by key workers and the factors influencing their work with teachers. The benefits for children, families and schools of key worker involvement are identified and the implications for schools explored. Consideration is also given to the advantages and disadvantages of teachers themselves taking on the role of key workers. It is argued that key workers can improve home–school relationships, facilitate the contribution of teachers in inter‐agency working, enable mainstream schools to better meet the individual needs of pupils with disabilities and improve their inclusive practice.

Multi‐Agency Care Coordination and Key Worker Services for Disabled Children

The authors describe the rationale for key worker services for disabled children, factors to consider in developing such services, the role of key workers, how a key worker service is operating in one authority and the impact it has had for families who received it.

Access to and use of NHS Patient Advice and Liaison Service (PALS): the views of children, young people, parents and PALS staff

BACKGROUNDnThe English National Health Service Patient Advice and Liaison Service (PALS) was set up to provide patients and their relatives with a way of obtaining information or expressing concerns about their health care. This study examined childrens, young peoples and parents access to and use of PALS, and how this could be improved.nnnMETHODSnQualitative and quantitative methods were used to obtain the views of children, young people, parents and PALS staff, on the inclusiveness of the service. These methods included discussion groups and interviews with 30 young people and 16 parents; a postal survey of PALS users, to which 171 (21%) parents responded; and telephone interviews with 14 PALS staff. The data were analysed using qualitative and quantitative methods, and the views of participants on key topics were examined.nnnRESULTSnChildren and young people were found to be low users of PALS, but thought that the service was potentially useful. They and parents and PALS staff all highlighted ways in which access to and use of the service could be improved. Participants views on the following topics are reported: awareness of PALS existence and role; access to and use of PALS; effectiveness of and satisfaction with PALS; and training of staff.nnnCONCLUSIONSnand recommendations Patient Advice and Liaison Service has not been designed and developed in ways that are fully inclusive of children, young people and parents. Based on their views and experiences, and the suggestions of PALS staff, the authors recommend that access to and use of the service could be improved, increasing awareness of PALS, facilitating access to and use of the service, providing training for PALS staff on dealing with young people and their issues, and developing links between PALS and other organizations that deal with young people and parents.