Jump to accessibility statement Jump to content

Living Assessment

Child with a teddy

Living Assessments

Understanding the experiences and impact of health and social care assessments on children and families:1989-present

Living Assessments is a Wellcome-funded research project working with experts-by-experience, academic experts and the All Party Parliamentary Group for Children, in order to explore and improve the experiences and impact of health and social care assessments on children, young people and their families.

In their own words…

 

Disability: a new history – Peter White’s BBC Radio 4 series

Children playing, Surrey 1935

Children playing, Surrey, 1935 - Wellcome Collection

Lambeth Hospital 1925

Lambeth Hospital, 1925 - Wellcome Collection

Child with toys, 1906

Child with toys, 1906 - Wellcome Collection

Disabled children in Surrey 1935

Disabled children, Surrey,1935 - Wellcome Collection

Visually impaired girl, 1785

Visually impaired girl led by a dog, 1785 - Wellcome Collection

Lord Byron corrective boot, 18th century

Lord Byron's corrective boot for club foot, 18th c. - Wellcome Collection

Living Assessments Project - Work Packages

Living Assessments WP1 explores the public representation of disabled and at-risk children’s health and welfare needs and assessment since 1989 (Children Act 1989), with special interest in:

 The complicated relationship between ‘social’ and ‘health’ needs and provision
 The changing constructions of ‘risk’ and ‘disability’ within justifications of this provision.

This entails examination of the evolution of legislation and changes in policy and practice, exploring the debates that prompted legislative and policy shifts, as well as their consequences. Living Assessments WP1 also investigates the concerns and issues raised through campaigns by child welfare charities and advocacy groups. Reports and guidelines produced by health professionals and providers provide further insight into the changing expectations and operation of assessment practices, and ways that measurement and thresholds were invested and shaped by these expectations.

Media and public opinion
Living Assessments WP1 explores how children’s health and welfare needs and provision were reported by the media to inform (or misinform) public opinion. Living Assessments WP1 examines the affective and performative dimension of our sources, for instance how they generate impressions such as objectivity and/or moral outrage.

The four primary areas for source material:
1. Westminster debates and published reports from government departments, select committees, and relevant policy bodies.
2. Charitable/independent sector literature, campaigns, reports and documents from relevant charities and parent advocacy groups.
3. Guidelines produced by bodies concerned with child health and welfare, such as the Royal College of General Practitioners and Local Safeguarding Children’s Boards.
4. Print and online news media sources and documentaries.

Living Assessments WP1 will allow to:

 Understand the wider context of public and policy discourses within which oral testimonies (Living Assessments WP2) sit and which they may navigate and contest.
 Interpret continuities and contrasts between wider public discourses and the ways that child disability and risk of harm are classified, narrated and responded to by services, according to service records (Living Assessments WP3).
 Provide a basis for understanding conflicts and tensions within policy and practice, further elaborated through action research (Living Assessments WP4).

Support in judging areas of focus and interpreting findings from Living Assessments WP1 will be provided by our Experts-by-Experience as well as by MPs and Lords from the All-Party Parliamentary Group for Children.

Living Assessments WP2 uses oral testimonies to find out about the experiences and concerns people have had about the two assessments of children. This will shed further light on how forms of measurement have been enacted to identify children’s health needs in welfare contexts, and how thresholds have operated for provision in response to these measurements.

Living Assessments WP2 explores:

 The participants’ affects and evaluations as well as their descriptions, as a way of tracking heterogeneity and aspects of best practice within their accounts of assessments.

 The script-like or performative aspects of assessment practices, the roles that are negotiated, and the moral and cultural dimensions of this process. For instance, the way children may interpret assessments of their needs in relation to their experiences of test-based assessment in education.

Prior to the Living Assessments project, a pilot research was conducted with 14 children who had experienced relevant assessments. This highlighted the way that the process of being measured by welfare professionals for their health needs could make them feel ‘like a thing to be put against a list and ticked off. Not like a person.’ There was a sense of resignation and defeatism that characterised their accounts of these assessments.

Living Assessments WP2 involves:

 50 oral histories based on questions arising from Living Assessments WP1, with individuals who experienced assessment as children, their families/carers, assessors, safeguarding and disability leads within primary care, and policy-makers.

 A further 50 oral histories of children and their families who have experienced one of the two assessments at the heart of the Living Assessments project.

 Witness seminars with professionals and policy leaders as a third group.

Whereas Living Assessments WP1 focuses on public discourses, Living Assessments WP2 focuses on personal testimonies, each designed to shed light on the other. Living Assessments WP2 examines agreement and discrepancies between testimonies of personal experiences and service-level discourses and provision (Living Assessments WP3). Experiences and concerns raised in Living Assessments WP2 are central to guiding the action research in Living Assessments WP4, and an important resource for expanding the moral imagination of policy discussions of children, families and those who assess them.

EbyE groups will co-develop the questions and prompts for the oral testimonies. Guidance in decisions about recruitment and in interpreting findings from Living Assessments WP2 will be provided by EbyE and by the All-Party Parliamentary Group for Children, as well as NCB colleagues. The Living Assessments Poet-in-Residence will work with Living Assessments WP2 transcripts to produce original work.

Through the study of remarkable and newly available administrative/patient records, Living Assessments WP3 explores how language and other social and structural factors shape assessment and service provision. CRIS was commissioned by the NIHR to permit research on the clinical records from the South London and Maudsley Foundation Trust (2007-present, PubMed ID 19674459) and Cambridge and Peterborough Foundation Trust (2012-present, PubMed ID 28441940). These archives, together holding c.350,000 consenting participants, represent the UK’s flagship for the secure use of public sector records for research, with extensive measures to ensure participant anonymity.

Living Assessments WP3 explores how policy and public discourses past (Living Assessments WP1) and present (Living Assessments WP4) play out within health, social service and welfare services. Living Assessments also examines how population-level and service-level processes agree or contrast with the intentions of policy, which may help interpret the testimonies of individuals (Living Assessments WP2) and professional guidelines (Living Assessments WP1).​

Living Assessments WP4 is to formulate, discuss and, hopefully, implement ideas and recommendations for changes to national policy and practice based on Living Assessments WP1-3. Action research is an iterative research method, in which knowledge is deployed as a tool and form of practice, an activity which in turn helps clarity and creates new knowledge – in Living Assessments’ case, new knowledge about the measurement of children’s health in welfare contexts generated in part through seeing responses to presentations of findings from Living Assessments WP1-3, for instance the responses of policy-makers to service users’ testimonies from Living Assessments WP2. New knowledge may also be generated by influencing and learning from changes enacted, helping to contour a sense of the scope and permeability of relevant practices and discourses. Living Assessments’ action research will be co-designed and co-implemented with Experts-by-Experience, and pursued in direct collaboration with MPs and Lords from the APPGC.

1. First step: build coalitions. Reflections from Living Assessments WP1-3 will be presented at official meetings of bodies hosted by NCB such as the expert Social Care Reference Group, and the influential Children’s Inter-Agency Group. Membership of these bodies includes over 40 experts and senior representatives of the statutory and voluntary sector including the Local Government Association, Association of Directors of Children’s Services, and the Royal College of Paediatrics and Child Health. This first step will allow to learn from the way that Living Assessments’ findings and recommendations are interpreted, and enable opportunities for endorsement to build coalitions for making change at local and national level.

2. Second step: work with MPs and Lords from the All-Party Parliamentary Group for Children to engage directly with the policy process. Results from Living Assessments WP1-3 will be used to form the basis for a Parliamentary Inquiry. A Parliamentary Roundtable will also bring ideas and conclusions from Living Assessments WP1, concerns raised in Living Assessments WP2, and patterns identified in Living Assessments WP3 into open discussion with policy-makers, practitioners and parliamentarians.

Living Assessments’ action research is to be facilitated by the extensive professional networks of the NCB, APPGC and Living Assessments’ collaborating organisations, such as BASW. It will also be helped by NCB’s role as official Strategic Partner to the DfE, role in delivering large-scale DfE and DHSC commissioned projects,and recent authorship of high-profile DfE- and DHSC-commissioned reviews on health and disability.Li ving Assessments WP4 will also contribute to the anticipated refresh of the NICE clinical guidelines on child abuse and neglect, which is angled to take place during the span of the Living Assessments project.

Living Assessments WP4 places our understanding of the history of policy and public discourse (Living Assessments WP1) into dialogue with current policy discourses, offering opportunities for reflexivity, surprise and contestation. Important learning for WP2 is anticipated, from seeing the discussions generated by personal testimonies and concerns, as well as responses to the accounts of our EbyE members. Understanding further the conflicts and tensions of policy and practice will also be essential for interpreting findings from Living Assessments WP3. In all cases, further interpretation and analysis
will be conducted on the other Living Assessments work packages in light of findings from Living Assessments WP4.

Experts-by-Experience

All Living Assessments work packages involve meetings every 8-10 weeks with three experts by experience (EbyE) groups, each with around 10-12 members:

 EbyE1. disabled children and adolescents;
 EbyE2. adult care leavers;
 EbyE3. parents who have experienced social work intervention.

The EbyE groups will support various aspects of each
The EbyE groups are recruited by NCB through existing networks and contacts, and will reflect the project values of diversity and intersectionality. All EbyE group members will be appropriately paid, informed, trained and debriefed as part of their involvement, and will be actively involved in formulating the terms and expectations of the groups. The NCB Safeguarding Officer and the NCB Research Ethics Advisory Group will ensure group members’ welfare, safeguarding within research ethics.

The EbyE groups will support various aspects of each Living Assessments work package, as well as overall research design and implementation. The interpretation and areas of focus of Living Assessments WP1-3 will benefit from feedback at multiple points by our EbyE groups. The questions and prompts in Living Assessments WP2 will also be codesigned with the EbyE groups. Living Assessments will provide training in qualitative analysis to two members of each EbyE group, who will contribute to the analysis of transcripts. Our action research in Living Assessments WP4 will be co-designed and co-implemented with our EbyE groups. All peer-review articles from Living Assessments will be coauthored with at least one EbyE representative, and a member of the House of Commons or the House of Lords from the APPGC. It is planned that two public events will be run by the EbyE groups, for instance during the Cambridge Festival of Ideas.