Are we making a difference? Report of the CoramBAAF Health Group conference,2019

Achieving positive outcomes for looked after and adopted children requires planning, provision of care and commitment from multiple partners/agencies. The latest CoramBAAF Health Group conference (Birmingham, 1 July 2019) looked at how different parts of the health and social care system evaluate outcomes. Speakers and participants explored how combined efforts and interactions are key in a whole-system approach and reflected on the multiple factors that affect outcomes for looked after and adopted children. The conference was attended mainly by health professionals with presentations from a wide range of speakers. Posters covering local projects were available for delegates to view and discuss at break times. The morning was chaired by Dr Lynn Snow and the afternoon by Dr Deborah Price Williams.

Ellie Johnson of CoramBAAF opened with a presentation on ‘Outcomes-based accountability’. Health professionals working with looked after children are aware of their accountability to commissioners, employers and the public purse but often voice their frustration regarding evidencing ‘what makes a difference’ in terms of interventions. The definition of ‘desirable outcome’ as a straightforward consequence of service provision is hard to demonstrate. The five desired outcomes for this vulnerable group were specified in the last Labour Government’s policy document Every Child Matters (HM Treasury, 2003), but how have services developed to meet the need and evidence success?

The Clinical Commissioning Group Outcomes Indicator Set (CCG OIS) aims to provide clear, comparative information for CCGs about the quality of health services and associated outcomes. The Public Health Outcomes Framework (PH OF) sets out indicators for life and healthy life expectancy and highlights the inequalities between different communities. The NHS Outcomes Framework Indicators (NHS OF) provide national level accountability for outcome delivery by the NHS and a vision for public health that reflects life expectancy and also quality of life. The NICE quality standards for looked after children identify the links to PH OF and NHS OF and can be used for a wide range of purposes, locally and nationally, to demonstrate cost-effective, consistent, transparent care to improve outcomes. The What Works Centre initiative aims to improve the way government and other organisations generate evidence for decision-making and public policy.

But how do these high-arching ambitions relate to our day-to-day clinical practice? The speaker referenced the publication Trying Hard is not Good Enough (Friedman, 2015), which models outcomes-based accountability using common sense language, avoiding the ‘language trap’ that can so often obscure a clear purpose; in a nutshell, population accountability (outcomes and indicators) and performance accountability (performance measures); seven questions from ‘ends to means’. A number of examples from Northern Ireland and Jersey illustrated the ends, in terms of population accountability and means, in terms of performance accountability. The concept of ‘Turning the Curve’ from ‘Where we are going if nothing changes?’ was introduced with examples as a process to get from talk to action.

All performance measures ask ‘How much?’, ‘How well?, ‘Is anyone better off?’, but they are not equal in terms of importance. It often seems we have more control over the least important measures. Factors affecting outcome for looked after children and young people include many variables.

Dr Rachel Hiller from the University of Bath presented her team’s research into the mental health and service access of young people in care. Some children do well despite adversity and outcome is not a comment on services. Their projects ask:

How do emotional difficulties develop over time?

What predicts a young person’s outcome?

What do young people and carers see as key issues with support?

What does this mean for service providers?

Mental health difficulties in looked after children are common and constitute a key driver for poor outcomes. The research has considered the Strengths and Difficulties Questionnaire (SDQ) scores of 200 children entering care and their trajectories. There appears to be a high referral rate but not necessarily related to the SDQ score. Treatment is poorly recorded, creative based therapies are common and SDQ scores only marginally improved overall. Among the questions posed were:

Is it appropriate to wait for placement stability?

Are we appropriately assessing the mental health need?

Are we providing the appropriate treatment?

Is this group of children being assessed like any other child?

The C-CATS Project is a longitudinal study of 120 10- to 17-year-old looked after young people. High levels of post-traumatic stress disorder (PTSD) symptomatology were identified with, largely, no way of prediction from case files (with the exception of sexual abuse) and no significant change in PTSD over one year. High rates of complex PTSD are associated with poorer outcomes. Well-validated screening tools for PTSD are available and existing NICE recommended treatments should be the first approach.

Linda Briheim-Crookall of Coram Voice gave a presentation on looked after children and care leavers’ subjective well-being. In partnership with Oxford University, Coram Voice has created Bright Spots which seeks to obtain the views of children to influence service development and strategic thinking. Currently official statistics reflect only an adult, objective perspective on the lives of children in care. The Bright Spots programme is strongly evidence based, was developed over six years of research and demonstrates what matters to the children themselves. The Your Life, Your Care survey (2017) encompasses the views of over 10,000 looked after children and care leavers in 40 local authorities since 2013. Findings include children’s sense of trust in their carers and social workers and the negative impact of change, their sense of belonging and what would make care better. The speaker asked delegates to reflect on how their services currently record the views of children and whether they are responsive to the well-being indicators expressed by them.

Dr Patricia Jackson from the University of Edinburgh presented ‘Improving outcomes for those children and young people affected prenatally by exposure to alcohol’. The global prevalence of alcohol use was shown, including how consumption is embedded in British culture. While the teratogenic effects of alcohol (i.e. negative impacts on the development of the embryo or foetus) are well established, the media continues to provide mixed messages. In Scotland, research conducted between 2010 and 2014 confirmed that recognition of foetal alcohol effects was low. Parents and carers were frustrated by the difficulty of accessing services. In response, the Scottish Intercollegiate Guidelines Network (SIGN) developed and published SIGN 156 (Healthcare Improvement Scotland, 2019). The guidelines are freely available at sign.ac.uk. The speaker emphasised the need for multidisciplinary assessment and response to diagnosis. Foetal Alcohol Spectrum Disorder (FASD) should not be a diagnosis of despair but a gateway to an action plan that recognises the life-long nature of the condition and avoids the negative outcomes of untreated co-morbidities and disabilities.

Dr Jackson referenced research that overwhelmingly demonstrates the disproportionate prevalence of FASD in looked after and adopted children. Professionals working with these groups have an extraordinary responsibility to provide appropriate support and treatment. In Scotland the Government is supporting strategies for awareness raising, training, improving diagnosis and targeting pregnancy exposure. While there is a way to go, especially in understanding what improves outcomes, real progress is being made in measureable outcomes including education targets, alcohol intake recording, the inclusion of FASD in developmental screening programmes and increased child and family support.

Joan Hunt, an independent social worker and trainer consultant, spoke about adoption disruption. This eloquent presentation used both her social work perspective and her personal experience as an adopter who faced the ‘learning cliff’ of child placement. She acknowledged the sense of compromise; adoption is a second choice option for most. For the child, the normal love/nurture cycle is compromised and survival strategies become rooted in early development. For adopters in ‘rescue mode’ this awkward child belies expectation ‒ ‘What’s wrong with the child?’ What’s wrong with me?’ The speaker described the overwhelming sense of responsibility for this ‘alien in your home’, walking on eggshells, your ability to communicate honestly compromised by fear of appearing to be failing. Trauma seems to envelop the household. She referenced Ottaway and Selwyn’s (2016) publication on compassion fatigue and foster carers. Carers are exposed to secondary trauma; the greater their empathy the greater their vulnerability.

The case of a child placed for adoption after five years in foster care was outlined from different perspectives. From the child’s point of view: ‘I was lost in the desert; I had left a path of jewels but the wind had covered them up; I found a pirate ship and knives and guns and fed social workers to the sharks.’ In his adoptive placement he was biting his adopters and torturing the dog; the social worker felt she knew and had a good relationship with him, but had failed to recognise that his friendliness towards her was a survival strategy. The foster carers had suppressed their views; following disruption, the child was able to return to them whereupon his behaviours resolved.

The speaker reflected on the importance of high quality life-story work with a key, ongoing role for new carers, helping the child to make sense of the past, replace fantasy with clarity and build healthy foundations for new attachments. Given what we know of the challenges for adopters and the pain and distress of young people who struggle to live within a family unit, the focus has to be on adoption support. The speaker highlighted her personal view that the medical adviser should be part of post-adoption planning such is their calm, holistic grasp of the child at the centre.

The next speaker, Katy Burch from Oxford Brookes University, was unable to attend and Ellie Johnson summarised her presentation, ‘Evaluating health and other outcomes for children in care and adopted: experience and findings from two National Studies from England and Wales’. The studies are ongoing and consist of an analysis of outcomes for children five years after a care order and an evaluation of the Adoption Support Fund (England). Among key findings is that more children than expected (one-third) were found to have a disability, including mild and moderate learning difficulties, Autism Spectrum Disorder (ASD) and Emotional Behaviour Disorder (EBD). The full survey should be available in 2021. So far, implications for practice suggest, predictably, that if crisis is to be avoided there needs to be better identification of the needs of these children, accompanied by support at an earlier stage. One suggestion is that there needs to be a service expectation that support for this group of children will be required rather than waiting for problems to emerge.

John Simmonds of CoramBAAF continued the theme of the Adoption Support Fund from his own considerable knowledge of its use. Over 10 million pounds have already been spent with an emphasis on measuring carer satisfaction. The multidisciplinary perspective is often missing in the application for funding and many issues about child assessment and measurement of outcome need to be aligned when it comes to considering the future of the fund.

Dr Simmonds went on to present his talk, ‘The relational world of permanence’. The concept of permanence as the key to positive outcomes is embedded in our national policy. The evolution of permanence has mirrored the speaker’s own professional life from his roots as a young social worker in the 1970s, when there was a growing understanding of attachment theory; while children were physically cared for there was the increasing realisation that they needed stability. The recognition of ‘drift’ in care and the child’s right to family life played their part in the development of permanence plans for children. He demonstrated how adoption, Special Guardianship and residence/child arrangement orders have played out over the past decade. Adoptions rose to a peak in 2014/15 but are currently in decline; Special Guardianships have been rising and arrangement orders are more or less stable. The number of children with placement orders had fallen but is beginning to rise again. The reasons for this are unclear.

Dr Simmonds extolled the achievement of permanence for children. The Circle of Security, a relationship-based early intervention programme designed to enhance attachment security between parents and children, was referenced, demonstrating a child’s exploration from secure base and safe haven. In addition, the Story Stem Assessment Profile is used to understand how a child’s experience shapes her or his behaviour strategies. Human beings adapt to survive and learn to work co-operatively. Children have the longest period of dependency of any other species and learning to adapt, trust and work with others is crucial to their success in socialisation and family life.

The process of mentalization involves the perception and interpretation of human behaviour in terms of intentional mental state. However, this is not the same as projecting our ideas on to others. The development of identity includes a grasp of who we are, where we belong, our connections, how others see us, how settled we are, who we trust and who we have faith in ‒ in fact, a combination of interacting and essentially relational factors. In the relational world we consider our identity in our own mind, but also from the minds of others, both the positive and negative aspects. What do other people think I am? What words do they use to describe me? What role do other people have in the way a child comes to think about themselves over the course of time? From the child’s perspective, to move onwards, you need someone you trust at your side, someone who knows you, good and bad, and is open to the complexities in your head as you try to understand the meaning that you have for others and them for you. Permanence is an evolving journey; having the confidence to move in and out of the Circle of Security, fundamentally relational and the very essence of who the child is and who they will become.