Medical adviser meetings with prospective carers: an evaluation of service

Introduction

Medical advisers play a key role in collating and interpreting the health and developmental history of looked after children (LAC) and informing prospective carers regarding risk factors for the future, including family history, intrauterine stress and substance exposure, and experiences of abuse and neglect. Full disclosure of available information is now recognised as good practice, especially in the light of messages from research and several notable cases where local authorities have faced litigation from adoptive parents who felt that information had been kept from them (e.g. A v Essex County Council [2003] EWCA 1848). Hill and Edwards (2009) surveyed 57 adoptions and highlighted the value for adopters of meeting with a medical adviser as well as some of the conflicts and challenges involved. Since that time, many parts of the UK have developed routine services to meet this need and these notes seek to evaluate the service provided in one area of London.

Background

In one inner London borough, provision for the medical adviser to counsel adopters and other long-term carers had been historically agreed on and detailed within a Service Level Agreement funded by the local authority. The offer consisted of one session per month with three 45-minute consultations (including associated administrative time). The service relied on social workers referring carers at least two weeks before a matching panel date and asked the carers to submit questions beforehand to target focus.

The consultation also covered areas where there would be implications for the child, even if this was not included in the carers’ submitted questions, and a letter summarising the consultation was sent to carers afterwards. Evaluation of the service was conducted annually with aggregated data being used over the 2011–2016 period examined by this study.

Design overview

Results

The following findings were revealed:

All the applicants had clear expectations of the nature of the service.

Discussion

Social workers referred adopters to the service preferentially over other long-term carers. Interagency protocol has subsequently been established that for children with disabilities, developmental disorders and/or complex medical needs, all substitute long-term carers must be referred to ensure equity.

The data suggest that the counselling service is valued by users and helps adopter/carer preparation. Self-reported ‘preparedness’ in adopters has been identified in research (e.g. Sar, 2000) as being associated with positive post-adoption outcomes including parent–child relationship and family functioning as well as reduced disruption risk. This supports the argument for commissioning medical counselling prior to long-term placement. It is now widely accepted and considered best practice that medical advisers routinely offer an appointment to prospective adopters. In the experience of the medical adviser peer group, counselling foster carers and kinship carers offering permanency is strongly advised but occurs less routinely. The meeting may also help to identify situations where the carer would benefit from specialised training or signposting for further information; for example, enhanced education for prospective carers of a child with a particular disability such as autism or hemiplegia.

Medical information impacts emotionally on adopters and therefore needs careful but honest delivery to ensure that health uncertainties are accurately and evidentially explained, while both contextualising risk and supporting the adopter. It is possible that a balance may be achieved by equal focus on both risk assessment, for example in relation to heritable and developmental conditions, and discussion about the availability of appropriate interventions and support.

It is our local practice that both the carer’s social worker and the child’s social worker attend. This promotes a shared understanding of the child’s needs and enables the provision of emotional support to carers. At times, the information shared has resulted in an upgraded adoption allowance or care package to better reflect the health needs. A widely held professional fear that adopters may in some way be ‘put off’ by explicitly explained risk, thus reducing the possibility of successful adoption for the child, has not been borne out by the evaluation.

Captured within this study are the types of missing information that have a particular impact, namely the child’s family history and outstanding BBI testing/results. Further analysis would be useful to unpick the elements constituting the impact, such as whether carers are aware of the scale of risk of BBI, which is usually small. In their summary of findings in relation to the potential disadvantages of missing family history Hill and Edwards (2009: 52) reflect:

Numerous examples were provided of how lack of family history had disadvantaged a child due to late diagnosis of conditions that might have been detected earlier had full information been available.

Apart from birth parents not disclosing information or denying consent to access health histories, other barriers to information gathering are the mobility of families and lack of understanding of the implications of health and social care information on the part of some social workers. Another factor might be lack of resourcing to collate information. In this locality there is a joint health and local authority work stream addressing information access issues which are not specific to children whose plan is for adoption. Provided that birth parents have given consent to access their own and their child’s health histories, for example by signing the CoramBAAF Consent Form, completion of CoramBAAF Forms M (mother), B (baby) and PH (parental health) is requested for all LAC. Training for social care practitioners across safeguarding and LAC teams has been delivered by the medical adviser and LAC clinicians to enhance social workers’ understanding of the health information needed and their role in obtaining consent to access it. Where it is safe and appropriate for birth parents to attend statutory initial health assessments (IHAs), community paediatricians undertaking these will also ask birth parents to complete the Consent Form (if not already obtained) that must accompany requests to complete Forms M, B and PH.

Concerning BBI risk assessment, while there is published guidance from CoramBAAF on the need to test, consent issues and case-by-case consideration, there is no research describing the number of LAC identified at IHA as needing testing or indicating whether such testing was carried out in a timely fashion or indeed at all. A default approach is applied locally (agreed policy with hospital infectious disease specialists) for all LAC whereby, if there is lack of parental consent to obtain BBI risk information or delay beyond two weeks of recommendation to acquire it, the child or young person should be tested with appropriate consent and counselling. Earlier testing for the majority of children at risk is the aim and relies on addressing the barriers discussed earlier.

Birth parents should be asked to give consent to sharing their own and their child’s health histories with prospective adopters and other long-term carers. Provided such consent is given, the medical adviser can freely share all known and relevant health information. However, medical advisers face a dilemma when this consent has not been obtained, such as when the birth parents oppose the adoption or have disengaged from the agency.

While the Adoption Agency Regulations 2005 state what child and family health information should be available, neither they nor statutory adoption guidance addresses sharing this information with prospective adopters without consent. It is widely accepted among medical advisers that a child and her or his carers ultimately should have the right to acquire any information that might directly or indirectly affect the child’s current or future well-being.

Situations where medical advisers do not have the consent of birth parents to share health information with prospective long-term carers continue to be of concern. Hill and colleagues (2010) highlight the tensions between parental rights to privacy and the rights of the child to full health history, and call for ‘more specific guidance’ in relation to information disclosure in adoption. The chapter on confidentiality and information sharing in Promoting the Health of Children in Public Care (Conroy-Harris and Feast, 2015) thoroughly considers the sharing of relevant health information concerning children.

Notably, the situation is different in Scotland where the Adoption (Disclosure of Information and Medical Information about Natural Parents) (Scotland) Regulations 2009 SSI 2009/268 may be helpful in obtaining certain medical information about the child’s family, if adoption is the plan for the child. Regulation 11 states that where the agency has not been able to obtain information about whether there is ‘any history of genetically transmissible or other significant disease’ in the birth mother’s or father’s families, a medical practitioner, such as a birth parent’s GP, must disclose such information to the adoption agency on request.

The welfare and medical arguments for adopted children benefiting from family history have been successfully made in the literature (e.g. Torbatnejad, 2012; Wallbank, 2004). While there has been no domestic case law allowing for open sharing of parental health information with children, there has been at least one ruling in the US that medical harm has clearly been associated with lack of sharing medical information about the child at adoption (see Foster by Foster v Bass [1990]). There are strong children’s rights arguments for supporting the acquisition of family history as detailed in the academic literature (Welbourne, 2002) and a rights framework could be more systematically applied across agencies in attempts to collate and negotiate the release of information.

Much can be achieved by sensitive working with birth families and both health and social care must make robust efforts to obtain consent to both acquire child and family health information early in a child’s journey and to share relevant information with long-term carers.

When significant hereditary health information emerges concerning either the adopted person or the birth family, sometimes many years after adoption, the NHS offers a service that provides the confidential transfer of details relating to an existing hereditary medical condition between the GPs of the adoptee and birth relatives. Thus, important health information can be shared without requiring contact between the adoptee and birth family. Further information about the service is available at: www.hscic.gov.uk/article/1801/Hereditary-Medical-Conditions. It appears that this service may not be widely known to GPs based on usage data and that medical advisers and social workers could helpfully signpost GPs.

Despite the best efforts, there will always be some situations where information is incomplete and this requires careful management. Medical advisers have an important role to play in training adopters and long-term carers during the initial preparation process, providing an overview of common health and developmental risk factors, thus enabling prospective adopters to consider the range of issues they feel able to accept in matching.

In the wider debate, ethical issues regarding roles arise when the concept of ‘risk of a condition developing’ is discussed. Medical advisers, and indeed social workers, subconsciously may be biased in how they impart risk information in order to secure the best outcome (adoption) for the child. Regular peer review and protocols can establish some basic guidance, with advice from clinical geneticist colleagues in terms of practice around discussing risk. Additionally, enhancing the knowledge base for both long-term carers and social workers is likely to improve their competence and ability to recognise and signpost any problems arising.

Finally, there is a paucity of research regarding the role, impact and value of medical counselling for adopters and other long-term carers in relation to long-term outcomes for adopted children and adopters. Many adoption support services recognise a role for health colleagues but there is a perception among medical advisers that while trauma and compromised attachment are well recognised in adopted children, genetic predisposition and recognition of developmental disorder are less established. More is needed to inform practice.

Conclusion

This service evaluation has confirmed the importance of prospective carers meeting with medical advisers. The process of receiving detailed health information involves the sharing of written reports and the opportunity to meet health professionals to discuss implications and answer questions. The experience shows that prospective carers tend to be empowered by knowledge regarding the child and are rarely discouraged from going ahead. Services must continue to evaluate their processes for accessing important health information and address the barriers preventing comprehensive collection.