Childhood Eye Cancer TrustCONFERENCE PROGRAMMESaturday 14 September 2013: 9.40 – 16.35Resource for London, 356 Holloway Rd, London N7 6PAThis programme is subject to change prior to the event. If anyone attending requires a final agenda to be sent in braille please let us know at the time of booking.

Time Adults programme Young people’s programme

09.00 – 09.40 Coffee

09.40 – 09.45 Welcome – Philip Moore (Out-going Chairman)

09.45 – 10.45 Research session chaired by Rowan Chowdhury (Trustee)1. Do vessel changes hold the key to

cancer progression in children’s eyes? - Dr Claire Wilson

2. Exploring the genetics of retinoblastoma - Dr Carmel McConville, Senior Lecturer in the School of Cancer Sciences, Birmingham University

1. Innovations in IT – what’s new for us?

2. Self Defence - Representative from Action for Blind People

10.45 – 11.00 Coffee break

11.00 – 12.00 Psychological issues session chaired by Lisa Brown (Trustee) TBC1. The emotional impact of

retinoblastoma – Dr Susanna Waern, Clinical Psychologist, Paediatric Liaison Team, Royal London Hospital (RLH)

2. Anxiety levels and Behaviour in Retinoblastoma Patients – Tara Shea, play specialist and Laura Rouse, Clinical Nurse Specialist, RLH

1. Healthy living – Charlotte Clifton RLH Clinical Nurse Specialist

2. Positive self image - Make up session and/or informal discussion - Representative from Teens Unite Fighting Cancer TBC

12.00 – 12.15 Q&A session – Claire Wilson, Carmel McConville, Susanna Waern, Tara Shea and Laura Rouse. Chaired by Rowan Chowdhury

12.15 – 13.00 CHECT Annual General Meeting

13.00 – 14.00 Buffet lunch

14.00 – 15.00 Artificial eye care session chaired by Ffion Miles (Trustee) TBC1. National Artificial Eye Service (NAES)

– how the service works, NAES representative

1. Competition results! Meet celebrity stylist and fashion guru Gemma Sheppard who will reveal the winner

Childhood Eye Cancer TrustCONFERENCE PROGRAMMESaturday 14 September 2013: 9.40 – 16.35Resource for London, 356 Holloway Rd, London N7 6PA

2. Socket management – Maureen McCalla, Clinical Nurse Specialist, Birmingham Children’s Hospital and Mr Manoj Parulekar, Consultant Ophthalmic Surgeon, Birmingham Children’s Hospital

of our makeover competition.2. Seeing a Psychologist? Are you mad?

Dr Susanna Waern, RLH clinical psychologist

15.00 – 15.15 Tea break

15.15 – 16.15 Genetics session chaired by Oliver Comyn (Trustee)1. Mind the gap – a national

Retinoblastoma audit - Dr Alison Foster, registrar in clinical genetics at Birmingham Women’s Hospital

2. After care – what’s next? - Dr Helen Jenkinson, Consultant Paediatric Oncologist with the Birmingham retinoblastoma team

1. The National Artificial Eye Service (NAES) – how you can help to shape your service – NAES representative

2. CHECT Teenage Support Service- Where do we go from here? Lesley Geen, CHECT Support Worker

16.15 – 16.30 Q&A session - Maureen McCalla, Manoj Parulekar, Alison Foster, Helen Jenkinson and NAES representative. Chaired by Oliver Comyn

16.30 – 16.35 Summary and close – Ian Ellington (in-coming chairman)

About the speakersDr Alison Foster: Dr Foster is a registrar in clinical genetics at Birmingham Women’s Hospital.  Following degrees in human genetics and medicine, Dr Foster trained in paediatrics before becoming involved in the national retinoblastoma genetics audit.

Laura Rouse: Laura has worked as the Clinic Nurse Specialist in the retinoblastoma team at the Royal London Hospital (RLH) for the past 2 years. Before joining the RLH team she worked for CHECT as the support worker and has 7 years experience as an oncology nurse. She comes with extensive experience supporting families and children through treatment.

Tara Shea: Tara is the Play Specialist in the retinoblastoma team at the RLH. Tara has worked with the Retinoblastoma team for nearly 5 years and works to support families and children through treatment and diagnosis.

Dr Carmel McConville: Dr McConville is a Senior Lecturer in the School of Cancer Sciences at Birmingham University. Dr McConville’s research interests are focused on understanding the molecular events leading to the development and progression of childhood solid tumours, particularly

Childhood Eye Cancer TrustCONFERENCE PROGRAMMESaturday 14 September 2013: 9.40 – 16.35Resource for London, 356 Holloway Rd, London N7 6PAretinoblastoma and neuroblastoma. Ultimately the aim is to translate this information into improved diagnosis and treatment for children with cancer.

Dr Helen Jenkinson: Dr Jenkinson is a Consultant Paediatric Oncologist with the Birmingham Retinoblastoma Service. Helen provides oncology care to the retinoblastoma patients and families in Birmingham.  In addition, she leads the Late Effects service in Birmingham which provides long term follow up care for young adult survivors of childhood cancer through into adult life.

Dr Claire Wilson: Dr Clare Wilson is a Clinical Lecturer in Ophthalmology. Claire has completed a PhD in retinal image analysis, during which she collaborated with bioengineers to develop CAIAR.

Sister Maureen McCalla: Maureen McCalla is a qualified paediatric and ophthalmic nurse. Maureen has been in the post with the retinoblastoma team in Birmingham since 2002. Her role is multi faceted and incorporates nursing, teaching as well as audit / research.

Mr Manoj Parulekar: Manoj Parulekar is a consultant paediatric ophthalmologist with the Rb service and has been in post since 2007. Manoj has a major clinical and research interest in oculoplastic surgery and socket reconstruction in children.

Dr Susanna Waern: Dr Waern has worked as a Clinical Psychologist in Paediatrics at the Royal London Hospital since 2007, providing assessments and interventions with children and parents with a range of different medical conditions such as diabetes, sickle cell disease and epilepsy. Susanna has a special interest in paediatric oncology – an interest that has grown further since she started working with the retinoblastoma service in November 2011.

Charlotte Clifton: Charlotte is a Clinical Nurse Specialist at the Royal London Hospital and has an interest in working with young people. Charlotte’s recent background as a paediatric/adolescent oncology nurse has involved working with young people aged 13-25.

Gemma Sheppard: Gemma is a celebrity stylist and fashion guru who worked with our teenage members modelling in a Vision Express fashion show earlier this year. Gemma is world renowned with a portfolio that includes celebrity clients, private VIPs, national media and international brands.

Lesley Geen: Lesley joined CHECT in August 2012 as a support worker based in London and supporting the Rb clinics at The Royal London Hospital. Her role is to make contact with families whose children are having treatment for Rb or undergoing screening, to offer support and to set up a UK-wide support service for teenagers affected by Rb.