Children's Cancer PSP Steering Group

Ben Crowther (aka Bennis the Menace) from Coventry was diagnosed with Rhabdomyosarcoma in June 2018. Despite the brutal effects of chemotherapy, Ben tried all he could to cheer up other patients throughout his own treatment, including telling jokes and pulling pranks on friends, family and the hospital staff. Pass The Smile was born... a project raising funds for research into kinder, more effective treatments for this rare and aggressive cancer. Ben gained his superhero wings just a year after diagnosis, age 7, leaving a huge hole in his family. Scott Crowther and his wife Sarah are cancer parents trying to do their bit to help other affected families. Scott is proud to represent Ben and all the other cancer kids on this project.

Loveday’s eldest son was diagnosed with acute lymphoblastic leukaemia at the age of seven. After finishing three and a half years of treatment last year, he is doing well and recently started secondary school. Loveday also has two younger sons. Loveday is a consumer member of the NCRI Children’s Group.

Alex is a long-term survivor of childhood cancer and has been involved with survivorship initiatives both nationally and internationally for several years. Alex is also a registered nurse and works as a Clinical Nurse Specialist within the Children and Young Peoples' Cancer Service at a leading London Hospital.

Andy and his wife were parents to Ruby who was diagnosed with Rhabdomyosarcoma in 2017 at the age of 4 and died in January 2020. Ruby was an incredibly happy and generous girl with huge spirit. She didn’t want other children to go through what she did and this is why Andy is supporting the work of the PSP and why he and Claire set up a Special Named Fund with CCLG to support research.

Amy’s eldest son, Rory, was diagnosed with medulloblastoma in October 2019 aged just 4 months. He underwent brain surgery and began chemotherapy at Bristol Royal Hospital for Children. Following his second round of treatment, Rory contracted veno-occlusive disease and spent a brave three weeks fighting for his life, but passed away in January 2020. Amy and her family are determined to do anything they can to improve the future of other families and children facing cancer diagnoses.

Anna's daughter was diagnosed with acute lymphoblastic leukaemia in October 2020, shortly after her second birthday. Her daughter's treatment will hopefully end in December 2022. The diagnosis came less than two weeks before the birth of her second daughter. Anna is currently on maternity leave from her job, managing a team in an information and advice service for older people.

Rachel Hollis is Honorary Nurse Adviser for Children’s Cancer at the Leeds Children’s Hospital. Before retirement in 2018 Rachel spent almost thirty years working in paediatric oncology and haematology in Leeds and for much of that time has been involved in developing services for children and young people with cancer at the local and national level. Rachel is a Fellow of the Royal College of Nursing.

Ashley is the Chief Executive of CCLG, the UK and Ireland’s professional association for those involved in the treatment and care of children with cancer, and a leading charity funding research and supporting patients and families through information provision. CCLG’s income and profile has grown substantially under Ashley’s leadership, with a new strategy published in 2018 including a specific aim to increase the funding of research into children’s cancer. Ashley is a founding member of the Children and Young People's Cancer Coalition, a member of the NHS England Children and Young People’s Cancer Clinical Reference Group and the NCRI Children’s Group and TYA/Germ Cell Group. 

I am Co-founder and Director of Impact at The Little Princess Trust; a charity who provides real hair wigs to young cancer patients and funds research in to paediatric cancers. I am also a bereaved parent, so can give a parent perspective to the steering group, as well as that of a research funding body and a service provider to children with cancer.

Jess Morgan is an NIHR Clinical Lecturer, who spends 50% of her time in clinical training in paediatric oncology at Leeds Children's Hospital, and 50% as a post-doctoral research fellow at the Centre for Reviews and Dissemination at the University of York. Her current research interests are in the supportive care of children and young people with cancer, using multiple methods to achieve this.

Dr Julia Chisholm is a Consultant Paediatric and Adolescent Oncologist at the Royal Marsden Hospital. She is currently Chair of the National Cancer Research Institute Children’s Group, a member of the NHSE Children and Young People’s Cancer Clinical Reference Group and the Co-Chair of the South Thames Children’s’ Cancer Network. She has broad experience of developing paediatric cancer services. Her research interest is in developing new treatments in children and young people’s soft tissue sarcoma.

I have been a Consultant Paediatrician with an interest in paediatric haematology and oncology at Royal Devon and Exeter for 11 years, having previously worked in the same capacity for five years in University Hospital North Staffordshire. I have been Chair of the CCLG Shared Care Discipline group for three years. I am a member of the Royal College of Paediatrics and Child Health (RCPCH) paediatric oncology College Specialty Advisory Committee and the oncology SPIN module lead for the RCPCH.

Jenni Hatton is the lead pharmacist for the East Midland Children’s and Young Person’s Integrated Cancer Service (CYPICS).  She has worked in paediatric cancer services for five years and has also worked within adult oncology and haematology services.

Helen Morris is Matron at Bristol Royal Hospital for Children for Paediatric Haematology/Oncology/Bone Marrow Transplant/Adolescents and Lead Paediatric Oncology Nurse for SouthWest of England.  Helen has been a Chair and member of the Children and Young People Cancer Nursing national group for nearly 20 years supporting the ongoing improvement of care of these patients.

For the past 16 years my main area of work has been as a Senior Specialist Dietitian working with children, teenagers and young people who have cancer at the Royal Marsden Hospital. I am also the chair of the British Dietetic Association’s Paediatric Oncology Dietitians specialist group and a member of the NIHR Nutrition and Paediatric/Teenage and Young Adult Oncology group.

Dr Rosa Reed-Berendt is a clinical psychologist working with children and families in the haematology, oncology and bone marrow transplant services at Great Ormond Street Hospital. She also has a previous research background in paediatric neuropsychology and young people with cancer.

Susan Picton is a consultant in paediatric oncology since 1996 in Leeds. She has a special interest in brain tumours in children and young people and has been a member of the NCRI brain group as the lead for Low Grade Glioma in the UK. She has been chief investigator for a number of clinical trials. Susan has been working for many years with children’s cancer programmes in both Uganda and Cameroon. She is also medical director of Martin House Hospice for Children.

Dr Rachel Dommett is a Consultant Paediatric Haem/Oncologist in Bristol. Her clinical interests include Leukaemia, Survivorship and Teenage and Young Adult cancer care. She undertook a PhD investigating genetic susceptibility to infection in children with cancer and during her lectureship she worked in the field of early cancer diagnosis. 

Helen is a Specialist Paediatric Physiotherapist at Alder Hey Children’s Hospital and has been the lead physiotherapist for Neurosurgery and Oncology since 2006. She is currently undertaking an NIHR Clinical Doctoral Fellowship with a focus on the assessment and physiotherapy management of children with ataxia following surgical resection of posterior fossa tumour. She is a member of the Association of Paediatric Chartered Physiotherapists and National Paediatric Oncology Physiotherapy Group and also a board member of the North West Neurosciences Network.

Helen Gravestock is currently Head of Research, Policy and Campaigning at CLIC Sargent, the UK’s leading cancer charity for children and young people. Helen has 13 years’ experience working in the charity and public sector and has a sound appreciation of how to influence positive policy change and deliver effective evidence based campaigns.

Sonia Malik is Head of Research, Policy and Campaigning at CLIC Sargent, the UK’s leading cancer charity for children and young people. Sonia has six years of experience in social research with young cancer patients and their families, and is passionate about using evidence to make the voices of young people heard and effect policy change.

Nigel Hall is a Consultant Paediatric Surgeon at Southampton Children’s Hospital and Associate Professor at the University of Southampton. He is an academic surgeon with a research portfolio covering the breadth of children’s surgery. His clinical interests include neonatal surgery, surgical oncology and upper gastro-intestinal surgery. He represents the CCLG surgeons’ group on this PSP steering group.

I am a specialist paediatric radiotherapist based in The Christie Hospital in Manchester, joining the team of proton therapy experts here in 2017. Prior to this I was a consultant in Nottingham for eight years as part of the East Midlands Childrens’ and Young Persons’ Integrated Cancer Service. I have been an active participant of the CCLG Radiotherapy Group for ten years and on the Executive Committee of CCLG for four years.

Keeley McEvoy is Assistant Head Teacher at the Medical Needs Teaching Service, Leeds. The service is responsible for delivering education to all children and young people across the city, who have a medical need. MNTS teaches in four settings: in the Community, at Queenswood Education Centre, in Little Woodhouse Hall and at Leeds Children’s Hospital, where education is provided for children from a wider regional area. Keeley also attends meetings of the National Association of Hospital Education that supports professionals working in hospital education across the country, forging strong links between various hospital schools and teaching services.

David Weller graduated from the University of Adelaide in 1982. He undertook PhD studies in Adelaide and Nottingham; after academic posts in Australia he moved to the UK in 2000 and is currently James Mackenzie Professor of General Practice at the University of Edinburgh. He leads the Cancer and Primary Care Research International Network (Ca-PRI), and was Foundation Chair of the National Cancer Research Institute’s Primary Care Clinical Studies Group and is a member of the Colorectal Clinical Studies Group. He has been involved in cancer research in both Australia and the UK; he led the evaluation of the UK Pilot of Colorectal Cancer Screening, and is part of the Edinburgh Primary Care & Cancer Research Group which runs a programme of research focusing on the roles of primary care in all aspects of cancer control. David sits on various national and international research and government committees on cancer, and works as a GP in central Edinburgh. He is Co-director of the University’s Centre for Population Health Sciences.

Kirsty Maddock is a Speech & Language Therapist at Leeds Children’s Hospital specialising in oncology and haematology.  She is also undertaking a National Institute of Health Research (NIHR) clinical academic internship researching post-operative paediatric cerebellar mustism syndrome following surgery for posterior fossa tumours. Kirsty is a registered member of the Royal College of Speech and Language Therapists and is also a member of the Yorkshire Paediatric Dysphagia Clinical Excellence Network.

Charmaine is a Highly Specialist Speech and Language Therapist working at the Royal Marsden Hospital where she has worked for the last six years.  Charmaine specialises in oncology across the pathway from birth to end of life care and has particular interests in head and neck cancer, neuro-oncology, dysphagia and instrumental swallowing assessment.  Prior to moving into the oncology field Charmaine has worked across London in the critical care and trauma field specialising in dysphagia and acquired communication difficulties in tracheostomy and ventilated patients. Charmaine has a keen interest in research and in particular patient involvement.

I am a consultant paediatric oncologist at Birmingham Children’s Hospital specialising in brain tumours and late effects of treatment for cancer in childhood. I am committed to improving the quality of care for children, young people and their families affected by cancer.

Angela Polanco, founder of Bethany’s Wish – Wilms Tumour Charity UK and mum to three beautiful children, lost her daughter Bethany to Wilms tumour in 2012 aged eight after a four year fight to beat the disease. She now campaigns to improve collaboration between professionals and parents of children with cancer and passionately believes that parents and young people must be involved in all stages of the research process in order to really make a difference to outcomes.  She is a consumer member of the National Cancer Research Institute (NCRI) Children’s Cancer & Leukaemia Clinical Studies Group, sits on the CCLG Peer review panel and is a member in PORT (Paediatric Oncology Reference Group).

Penelope is a qualified and registered Health Play Specialist. In 2008, Penelope joined the team at The Young Oncology Unit at The Christie NHS Trust as the Play Specialist and Paediatric Support Coordinator. Penelope is a specialist in preparing children and young people for radiotherapy and imaging and most recently, proton beam therapy treatment. She presents at national and international conferences about her work. Penelope has papers published with the RCNi and a book to support children with hair loss with the CCLG. She encourages all Health Play Specialists to evidence their work and publish to promote best practice within the Health Play Specialist profession and be advocates for the children and young people in their care.

Bob is an Honorary Consultant in Paediatric/Teenage-Young Adult Oncology at Leeds Children's Hospital and Senior Clinical Academic at the Centre for Reviews and Development, University of York. His main academic area of work is in the development of individual participant data meta-analysis, and the development of skills in appraisal and translation of clinical research in practice. Bob qualified in Medicine from Somerville College, Oxford in 1997 after an undergraduate career in Clare College, Cambridge. He trained in Oxfordshire and Yorkshire before being appointed to a Consultant post in 2008.

Susie is a Researcher at the University of Surrey. Susie has a Psychology degree and MSc in Health Psychology. Susie’s research interests include: the experiences of children and young people who have cancer, communication about cancer and treatment between children, professionals and parents, the use of technology to improve patient care and transition from child to adult health services. Susie is part of the coordinating team for the project and will undertake the role of the ‘information specialist’, cleaning and organising responses to the survey and checking existing evidence to see if any questions have already been answered.

Faith is a children’s cancer nurse, and now a researcher with the majority of her research focused on the breadth of children’s and young people’s cancer care. She has over 25 years’ experience in children’s cancer care. She works at Great Ormond Street Hospital for Children NHS Foundation Trust in London and the University of Surrey. She has been an active participant of a number of professionals groups, leading and supporting the ongoing improvement of care through research for this particular group of cancer patients and their families. Her acclaimed work in this field led to a fellowship with the Royal College of Nursing (RCN), and more recently, a Life Time Achievement Award from the International Society of Paediatric Oncology (SIOP).

Angela Stewart is a project manager at CCLG. She is responsible for managing the charity’s activities within Child Cancer Smart, a childhood cancer early diagnosis collaborative project, and an initiative to develop support and funding for a national childhood cancer data infrastructure project. For the Children’s Cancer PSP, Angela will provide administrative support for the Steering Group.

After spending many years as a biomedical researcher, Jonathan moved into research management and has worked in Research Council, University and NHS settings. After moving from London to Yorkshire, he joined the NIHR in 2007, establishing the Comprehensive Clinical Research Network. Most recently he was the Assistant Specialty Cluster Lead for Cancer, Surgery and Oral & Dental Health in the NIHR Clinical Research Network. With over 25 years of experience networking with charities, the public and private sectors, Jonathan joined the JLA team as an adviser in April 2019.