Establishing a National Surveillance System for Rare Child & Adolescent Psychiatric Disorders

Established: April 2007; first meeting to be convened 8th May 2007 of core members and a second more inclusive stakeholder meeting in July 2007.

Convenor (Chair): Dr Dasha Nicholls, Consultant in Child and Adolescent Psychiatry, Great Ormond Street Hospital, London; contact d.nicholls@ich.ucl.ac.uk

Members: include psychiatrists, paediatricians, epidemiologists, and representatives of parent/user groups:

Dr Dasha Nicholls (convenor) Consultant Child & Adolescent Psychiatrist and Honorary Senior Lecturer Great Ormond Street Hospital /Institute of Child Health, London; Mr Richard Lynn Scientific Coordinator, British Paediatric Surveillance Unit, Royal College of Paediatrics and Child Health; Mrs Linda Haines Principal Research Officer, Research Division Royal College of Paediatrics and Child Health; Professor Neil McIntosh Paediatrician and Vice President (Research) Royal Collage of Paediatrics and Child Health; Professor Paul Lelliott, Psychiatrist and Director, College Research and Training Unit (CRTU) Royal College of Psychiatrists; Anne O’Herlihy Research Fellow, CRTU Royal College of Psychiatrists; Professor Elena Garralda Professor, Child & Adolescent Psychiatry Imperial College, London; Dr Tamsin Ford Senior Lecturer, Child and Adolescent Psychiatry Institute of Psychiatry, London; Dr Cornelius Ani Clinical Lecturer, Child & Adolescent Psychiatry Imperial College, London; Dr Daphne Keen Consultant Developmental Paediatrician and Executive member of British Paediatric Mental Health Group St George’s Hospital, London
Dr Richard Reading Consultant Paediatrician, British Association of Community Child Health Norfolk Primary Care Trust and School of Medicine, University of East Anglia

Devolved nation members: 
Dr David Batty Wellcome Training Fellow in Chronic Disease Epidemiology, MRC Social and Public Health Sciences Unit University of Glasgow & University of Edinburgh

Service user rep: 
Carly Raby Young People's Participation Manager Young Minds

Service user and carer involvement: Carly Raby, CRG member and Young People's Participation Manager from Young Minds, will initially represent the voices of children and young people by taking information to and from the children and young people's panel at Young Minds (made up of children and young people ranging between 5-25 years of age) for them to scrutinize discussions and decisions and then feed their thoughts and feelings in the group. As the CRG develops and receives training on the benefits and in practical methods of involving children and young people, then Carly will support them, and their parents, to become involved directly.
Up to that point the CRG will develop a clear and transparent document about how young people can be involved, the nature and commitment of their involvement, what the group is for, where their participation can lead to, and what support/ incentives they might receive (i.e. Training in research, accredited packages leading to work experience, travel expenses etc), whilst identifying what particular support they might need to have an equal voice and ensure that user involvement was representative.

In addition, each project identified for surveillance through the system will involve service users in relation to the
disorder under investigation. Proposed user groups to target for this stage include the Service Users Enterprise (SURE)
at the Institute of Psychiatry, representatives of INVOLVE (www.invo.org.uk), who currently work with the BPSU, as well as the
Parents and Carers Groups of both the RCPCH and RCPsych.

Information and results of studies will be disseminated to appropriate support/representative groups and encouragement will be given to include research information on their websites.

Remit and Aims:
This research group aims to:
1. Continue to work towards establishing a national surveillance system for rare psychiatric disorders affecting children and adolescents
2. Identify appropriate surveillance methodology to facilitate epidemiological research in psychiatry
3. If feasibility is proved, establish a Psychiatric Surveillance System, with involvement of appropriate institutions

A model for such a system exists in the form of the British Paediatric Surveillance Unit (BPSU), currently funded by the Department of Health to undertake surveillance of rare conditions in children. A monthly card with a menu of conditions is sent to clinicians who report new cases. Detailed data are collected by questionnaire. This methodology has proven a robust and safe way to collect anonymous case reports, leading to over 200 publications to date. A recent successful feasibility study of early onset eating disorders involved both paediatricians and child psychiatrists, and the group is keen to extend the use of this methodology to the study of other rare psychiatric disorders.

Current Status & Future Plans:
1. CRG composition: Five new members have joined the group to ensure involvement of psychiatrists and paediatricians most likely to use the system under development, and to establish user and carer involvement.

2. Meetings: Three meetings of the CRG and one stakeholder meeting have been held to date. The next meeting will be dedicated to discussion of how best to maximise user and carer input, and to finalising initial submissions to put forward to the MHRN.

3. CAPSS development: A short paper outlining how a CAPSS system could be developed has been produced, and development costs estimated. The paper had been sent to the Registrar of RCPsych, because of the importance of RCPSych support. Possible funding sources are being explored.

4. Studies to run on CAPSS: The first condition for study on the joint CAPSS/BPSU system has passed the first stage of the BPSU submission process. Access to professional data for this study has been obtained from the Royal College of Psychiatrists, paving the way for future studies. A number of other conditions for study have been identified, and advice on CAMHS priority areas sought from NIMHE and the DH.

Progress report April 08