James Lind Alliance Priority Setting Partnership (JLA PSP) is an organisation, funded through the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), that identifies and prioritises treatment uncertainties that they agree are the most important for research. Its aim is to bring patients, carers and clinicians together in these partnerships to ensure that researchers, and those who fund health research, can focus on what really matters to both patients and clinicians.
Robin is a Neurologist from Edinburgh Centre for Neuro-Oncology, established the Cochrane Neuro-Oncology Group, is Lead for the Neuro-Oncology Section of the Association of British Neurologists, is on the British Neuro-Oncology Society Executive, was Lead Clinician of the Scottish Adult Neuro-Oncology Network.
Helen is Director of Brainstrust as well as being on the NCRI Brain CNS CSG, quality of life subgroup. She is a member of NCIN brain and CNS and CTRad executive and is involved in many NHS patient organisations.
Kathy is Co-Director of the International Brain Tumour Alliance; Cochrane Neuro-Oncology Group Consumer Representative; Vice-Chair of the European CanCer Organisation's (ECCO) Patient Advisory Committee; Patient Issues Editor for the European Association of Neuro-Oncology's (EANO) online magazine; a member of the NCRI Brain CNS Palliative Care and Quality of Life subgroup and a member of the BNOS Rare Brain Tumours Group. She is also active in a wide range of European rare cancer and patient advocacy initiatives.
Gail is the Managing Editor of the Neuro-Oncology Cochrane Group and the Cochrane Gynaecological Cancer CRG. The Cochrane Collaboration is funded by NIHR and publishes systematic reviews of evidence of effectiveness of interventions for treatments or the identification of harms related to treatments in clinically controlled trials. Her team is experienced in searching for evidence using trained trial search co-ordinators.
Paul is a Neurosurgeon in Southampton and is also the Chair of the NHS Commissioning Brain CRG and Chair of NHS England CNS Tumours Clinical Reference Group. He is also a member of Society of British Neurosurgeons.
Ally is a PsySTAR Fellow in Psychiatry in Edinburgh. He is a Contact Editor for the Cochrane Neuro-Oncology Group and is Chair of the Scottish Adult Neuro-Oncology Network Psychology & Supportive Care Group and Junior advisor on the British Neuro-Oncology Society.
David is Professor of Paediatric Oncology at the University of Nottingham. He is President of the British Neuro-Oncology Society and is on the NCRI Paediatric CSG, EU Rare Tumour Group, NCRI Paediatric Clinical Study Group Brain Tumour Subgroup and CRUK CTAAC, as well as advising several children's and neuro-oncology charities.
Lucy is a member of the National Cancer Research Institute brain tumour Clinical Studies Group and European Organisation of Research and Treatment of Cancer brain tumour group. She was Chairperson of the NCRI brain tumour palliative care subgroup.
Kirsten is an adult Clinical Oncologist in Bristol. She is a member of the NCRI Clinical Studies Group, EORTC Radiation Oncology Group and brain Tumour Group in addition to being a member of the Royal College of Radiologists/Oncology
Jamie is a Clinical Nurse Specialist in Neuro-Oncology at Kings College Hospital, London. He has a wealth of experience in clinical neuro-oncology.
Richard has extensive experience of public engagement and partnership working in a wide range of settings.
He developed innovative programmes of support for coalmining communities in the midlands, later managing the
Rural Development Programme in Nottinghamshire. Richard established the innovative East Midlands School for
Social Entrepreneurs and a network of Independent Equalities Advisory Groups in Nottinghamshire.
Richard currently works with the James Lind Alliance Pressure Ulcer Partnership, on the project "Order, Chaos and Chronic Illness" exploring the way we think and write about chronic ill health. He also co-chairs the University of York's Department of Health Sciences Patient and Public Involvement Committee and is a James Lind Alliance Adviser.
Pippa joined The Brain Tumour Charity as a Trustee in 2008. She is Chair of the
Information and Support Sub-Committee and is a member of its Research Sub-Committee. After graduating with a
degree in Biochemistry and undertaking further research, Pippa worked in central government, having held a
number of senior posts in HM Treasury and HM Revenue and Customs. She has broad health sector experience,
having been a member of Great Ormond Street Hospital’s Transformation Board (2008-2012).
She is also a non-Executive Director of the Dasic Group, a marine engineering business. Pippa has taken a career break since her 15 month old son, Lawrence, was diagnosed with a brain tumour. She cared for him until he passed away in September 2007 aged 3 years 9 months.
Sue is Chief Executive of Brain Tumour Research. Her niece Alison died from a brain tumour. Sue established a charity Ali’s Dream and was appointed Chief Executive of the group of 21 smaller charities.
David is the spinal cord tumour patient representative. He recovered after surgery to become a paralympian rower who achieved a gold medal in 2012 with the rowing team. He was made MBE in 2013.
Leanne is one of the brain tumour patient representative. She is working as a fashion and luxury consultant for Coutts Private Bank and is a trained marketing consultant and active brain tumour advocate and fundraiser.
Jane is a Palliative Care consultant at UCL and National Hospital for Neurology and Neurosurgery in London. She is a member of the NCRI Brain CSG Palliative Care section and several other Palliative Care Societies.
Sebastian is Professor of Neuropathology at UCL and National Hospital for Neurology and Neurosurgery in London. He is a British Neuro-Oncology Society Executive member and advises on Neuropathology at a national level
Claire is a a Partner at Apex Executive, an Executive Recruitment Consultancy. She is one of the brain tumour patient representatives on the Group and is passionate about raising awareness about Brain Tumour Support and Ehlers-Danlos Syndrome.
Nazia is a Highly Specialist Occupational Therapist at the National Hospital for Neurology and Neurosurgery, London. She is a member of the Specialist Section of Neurological Practitioners for OT and has a keen interest in Neuro-oncology & rehabilitation. She is about to start on her masters in research exploring Vocational Rehabilitation and Brain Tumours
Maddie was born at the Chelsea & Westminster Hospital, and has lived in London all her life. She is now at Emanuel School, in Battersea, and is at the end of year 9. She is very into sport, drama and music. Maddie began having epileptic seizures at around age 8, she wasn’t formally diagnosed till age 10 with epilepsy, and this was also the time when she was first given an MRI and diagnosed with a brain tumour (low grade glioma, right temporal lobe). The tumour was surgically removed in July 2013 (at Great Ormand Street Hospital) as the epileptic seizures increased and could not be controlled by her medicine. The operation was a success, Maddie was back at school 6 weeks later and playing sport not long after.
Bella lives with her mum in London. She is at the end of year 9 and enjoys netball, baking and art. Bella has had plenty of experience as a carer and confidante for brain tumour patients as her mum had a BT removed in August 2013, her best friend Maddie (at age 13) had a BT removed in July 2013 and another very close friend has a mother with brain cancer. Bella was very much involved in her mum’s treatment and care. Having been so close to two people with brain tumours, Bella would like to be instrumental in helping children who have a brain tumour or have someone close to them with a brain tumour.
I am a specialist physiotherapist currently working in a community rehabilitation post in Surrey. I am supporting this project because of my broad experience, including my own research, in the rehabilitation and management of neuro-oncology patients through my previous post as Specialist Physiotherapist at the Royal Marsden Hospital.
I am the Professor of Neurosurgery at King’s College Hospital with a special interest in neuro-oncology. I am chief or principal investigator on a number of studies, including a phase III immunotherapy trial for glioblastomas.
I am the Team Leader for Speech and Language Therapy at University College Hospitals NHS Foundation Trust in London. I became involved in this project having worked in an acute neurosurgical unit and then a charity-funded support and information service. I have observed the reality for patients and their families of what living with a brain tumour really involves – and it is not always the medical aspects that create the greatest challenges.
I am 23 years old and in September 2012 I was diagnosed with a pilocytic astrocytoma, which has been treated with radiotherapy. I work in a doctor’s surgery as an administrator/receptionist and enjoy watching rugby and doing the odd bit of web coding.
I am a trained medical doctor and brain tumour patient. Diagnosed with a malignant glioma in 2008, I was ultimately forced to leave medicine. Retraining as a teacher in further education, I now work full time as a freelance writer, educator and science communicator; and presently contribute to the digital news distribution for the International Brain Tumour Alliance.
I am married with three children and have spent my entire career working for international banks in London. I enjoy playing golf when I get the chance, which isn’t very often unfortunately. I was diagnosed with a brain tumour in 2006 and had an operation to de-bulk it in 2009 followed by intensive radiotherapy. I have a positive outlook on life and have an awareness that despite living with a brain tumour, there are millions of people around the world who have far greater problems than me to contend with in their lives.
I am a Research Development Manager and have worked for Children with Cancer UK since 2003, contributing to the ongoing evolution of the charity’s research grant programme. In 2013 we launched the Children with Cancer UK Brain Tumour Initiative in response to concerns about the historic under-funding of this disease area and the continued poor outlook for very many young brain tumour patients. We are investing at least £3m over three years in this initiative and hope that this will help to increase momentum in the field.
I am a research scientist with over 50 years’ experience in molecular biology, early mammalian development and cancer. Now Emeritus Professor of Molecular Embryology at the Institute of Child Health, University College London, I continue my interest in genetic, epigenetic and lifestyle factors affecting the development of tumours, as well as their managements and clinical interventions. I was diagnosed with an intramedullary ependymoma in my thoracic spinal cord in 1997.
I am a GP in Edinburgh and the wife of a brain tumour patient who was diagnosed with a low grade glioma in 1999 and died in 2012. I am interested in the effects of brain tumours and their treatments on the patients and carers. Even those who survive many years often have to give up promising careers due to the brain injury and the impact on families is immense.
Laura is part-time manager of JLA Neuro-Oncology Group in Edinburgh. She is also a Managing Editor within the Cochrane Collaboration as well as being qualified in Psychology.
Julia is part-time assistant Manager JLA Neuro-Oncology Group in Edinburgh and helps with the day to day running of the Neuro-Oncology JLA. She will be involved in literature searching as well as leading a Cochrane Review.
Karolis is a 5th year medical student with an interest in Neuro-Oncology. He has done research in brain and spinal cord tumours. He will assist with categorisation of questions from the JLA survey.
Niall is Web and IT Support for the Neuro-Oncology JLA Group. He is a company director of a web company and is qualified in Finance and is doing an MSc in Computing focusing on software engineering.