This presentation was made with slides kindly provided by: Sue Dolby Melinda Edwards Konrad Jacobs Karen Steinhardt Penny Titman

Emotional and Behavioural difficulties in Children and Young People with (chronic) Health Conditions The Role of Paediatric Clinical Psychology National Council for Child Health and Well-being RCN, 16th June 2010 Dr Konrad Jacobs Department of Paediatric Psychology Children’s Hospital Oxford Chair Paediatric Psychology Network

Paula, aged 15 15 year old girl with ALL Parents divorced; Arguing 13 year old sister self harms; seen by CAMHS Refuses to come out of the car outside the hospital for chemo treatment Consultant oncologist wants to sedate her to force her to have treatment and is talking to legal services Referral to Clinical Psychology

Jenny, aged 11 Jenny has type 1 diabetes and needs to inject herself with insulin and take pin prick blood tests 4x daily. At her clinical review her overall blood test (Hba1c) suggests poor control placing her at high risk of diabetic complications. She says she doesn’t believe she really needs all the treatment as she goes without injections and eats chocolate frequently with little perceived effect. She is very angry with her diagnosis and her mother for constantly nagging her or telling her off for not carrying out her care. Her mother explains that she has 2 other younger children that take a lot of her time and she can’t understand why Jenny won’t look after herself as she knows children much younger than Jenny can manage their care.

Michael, aged 6 Michael has recently been diagnosed with an aggressive form of Juvenile Arthritis He has to have weekly Methotraxate injections and monthly blood tests It takes 2+ hours for Michael to have his injections; His mother gets upset/tearful; His father gets angry

Alice, 13 Alice has widespread idiopathic chronic pain syndrome She frequently attends her GP surgery, Paediatrician and local A&E; There is no medical treatment for her condition She has stopped going to school, has limited mobility, uses crutches, has disrupted sleep, panic attacks and low mood Her mother has had to give up her job to care for Alice; The family have had to adapt completely to Alice’s disability;

National Service Framework for Children in Hospital (DoH, 2004) “Much can be done to help children and young people with long term conditions experience an ordinary life. A key element of this support should be good mental health input to maximise emotional well-being and prevent or minimise problems.” In standard 6 “Attention to the mental health of the child, young person and their family should be an integral part of the children’s service, and not an afterthought…It is therefore essential for a hospital with a children’s service to ensure that staff have an understanding of how to assess and address the emotional well-being of children”. In standard 7 Slightly raised levels of emotional/behav probs

Paediatric Psychology ‘Paediatric psychology as a field of research and practice has been concerned with a wide variety of topics in the relationship between the psychological and physical well-being of children, including behavioural and emotional concomitants of disease and illness, the role of psychology in paediatric medicine, and the promotion of health and prevention of illness among healthy children’ Roberts, Maddux & Wright, 1984

Impact of an ill child in the family “Families facing serious paediatric illness are essentially ordinary family facing extraordinary stressors” Kazak, 1997

to enable working at all Adopting a framework to enable working at all levels of the system (Kazak, 2006) Specialist Targeted Universal

Why is Paediatric Psychology a growing field? Better understanding of the impact on children and families User perspective: psychosocial issues as important as the medical issues More research to validate the role of psychology – interventions improve psychological and health outcomes National guidelines (e.g. NICE; CF trust; ARMA) Cost reduction Improved treatment outcomes Improved short to medium term survival rates

Structure within British Psychological Society BPS Other divisions Eg occupational Division of Clinical Psychology DCP E.g. educational Faculty of Children and Young People FCYP Paediatric Network

Paediatric Clinical Psychology in the UK PPN Survey, 2008 Grouping of clinical child psychologists working in medical health care settings Approximately 220 FTE and > 340 Clinical Psychologists working in Paediatrics across UK Approximately 86 Psychology Services to Paediatrics across the UK 26 different specialist areas Increasing number of life span posts and posts in transitional care/young people

Models of Service Provision in the UK PPN Survey, 2008 79 % Dedicated Paediatric Psychology Service 7% Integrated in multi-disciplinary mental health teams (liaison) 9% CAMHS-based (Child and Adolescent Mental Health Service) 5% Community based (e.g. Palliative care)

Many similarities with core CAMHS work, but also differences….. Paediatric Psychology CAMHS Initial focus on physical health, symptom management and adaptation/coping Integrated within paediatric health teams Joint/close working within paediatric team Regional/specialist tertiary service Focus on diagnosis of psychopathology and treatment. Referral to ‘outside’ service Less access to medical plan/ communication Rare presentations in the context of CAMHS priorities Local service

Who do we work with? Directly with children and young people With families (parents, siblings, grandparents) With medical teams With outside/voluntary agencies With the wider organisation Direct work - Assessing and responding to needs of child & family Whole child, not just the illness aspect Developmental knowledge & lifespan perspective Child’s understanding about illness/treatment Psychosocial adjustment Risk and resilience, impact of stressors Integrated and coordinated approach with paediatric team Protocol-based assessments (e.g. pre-surgery) Indirect work Promoting psychological framework for thinking about illness, e.g. through psychosocial and ward meetings Consultation & supervision Staff support, eg reflective practice, co-memorating groups Workshops eg Stress Management, focussed workshops on symptom/behaviour management - Development of policies, guidelines. Research and development of evidence based practice

Types of referrals to Paediatric Psychology Service Preparation for medical procedures Pain management Adjustment (child & family) Information giving Disclosure Consent issues /decision making Adherence to treatment Transition to adult services Trauma Grief & loss Psychogenic / non-organic symptoms From ‘simple’ work (e.g. needle phobia to highly complex, e.g. end of life decisions; when the system gets ‘stuck’

Adopting a developmental approach...... Developmental stage of child determines in part how child will make sense of their body, illness & treatment (incl. adherence to treatment) Life cycle of family stages marked by different developmental tasks (impacts on their capacity to cope with illness)

Adopting a Systemic Approach...... Understanding the impact of chronic illness on different systems: The body/illness/symptoms; Family (multigenerational & cultural); Medical care; Education; Society; Beliefs Developmental change

Using a variety of strategies...... Cognitive behavioural Systemic Solution focused Narrative Attachment Motivational interviewing Etc

Balancing act between child/adol, parents/family and the medical team.

Some challenges over the next few years...... Financial challenges facing the NHS: impact on psychosocial care? Guidelines (Voluntary organisations / NICE / PPN)

kjacobs@nhs.net