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Successful Destinations

We held our 7th Annual Success Conference, for survivors by survivors entitled “Successful Destinations” on Saturday 2nd March 2024 at the Royal Society of Medicine building, 1 Wimpole Street London.

Who was it for?

Survivors and current patients from as young as seven, friends and families, networked and took part in creative activities.

They shared inspirational journeys with – and asked questions of – each other and of  diverse professionals, parliamentarians and NHS decision makers, learnt about services and help and our the call for new Success Survivorship Centres.

Diverse Oncology, Endocrinology , Neurorehabilitarive, Mental health  Educational,  Clinical and Legal professionals networked and heard the authentic voices of our survivor community, and increased their awareness and understanding of the developing rehabilitation pathways.

Can you help us to cover the cost of our annual conference?

We are sorry to ask but…

We are a small charity, doing big things; and every penny counts.

If you might be able to help, please visit here where you can also Gift Aid your donation.

We’re always looking for sponsors of our events and conferences, if you’d like to find out more about getting involved email us. . 

What did attendees have to say? 

Over 90% of people at Successful Destinations thought attending the conference was valuable and worthwhile – click the button below to read more…

Conference Highlights

Meet the panel

Dominic Grieve KC – Success Patron

I am delighted to be able to once again support Success. As a charity committed to helping children recover their full potential after treatment for brain tumours, it is transforming lives for the better.

 

Dr Helen Spoudeas – Success Founder and Paediatric Endocrinologist

I am a leading neuroendocrine specialist. In 2000, Dr Spoudeas founded the SUCCESS project, the first and largest neuroendocrine surveillance service in the UK, and the precursor to Success Charity.

Right honourable Derek Thomas MP

I’m committed to doing everything possible to continue to make West Cornwall and the Isles of Scilly a greener and healthier place. We can do this through creating better skilled, better paid jobs in health and social care, in construction as we improve the efficiency of our homes and in all other areas relating to climate change and the climate crisis.

 

Lord Guy Sandhurst KC

Guy is an excepted hereditary peer who entered the House of Lords in July 2021. He sits on the Conservative benches. Until 2019 when he retired, he practised as a barrister, specialising in the fields of legal practice/negligence and clinical negligence. He was Chairman of the Bar Council in 2005.

 

Professor Darren Hargrave – Paediatric Neuro-oncology at UCLH and Honorary Consultant Paediatric Oncologist at GOSH

I am a full professor of Paediatric Neuro-oncology at University College London and Honorary Consultant Paediatric Oncologist at Great Ormond Street Hospital, London UK where he leads the Neuro-oncology and Experimental Therapeutics programme since 2011. Prior to this following training in UK and Canada he was appointed in 2002 as Consultant Paediatric Oncologist where he developed the South Thames Paediatric Neuro-oncology and Drug Development programmes. He has been the Chief Investigator of over 15 Clinical Trials from “first in child” to large Randomised International Phase III studies. He is the current Chair of the UK NCRI Children’s Cancer Group and Vice-Chair of the Paediatric Experimental Cancer Medicine Network Until 2022 he was the Chair of the European SIOPe Paediatric Brain Tumour Group. He serves on multiple National and European Childhood Cancer organisations including UK NCRI, CRUK and ITCC committees. He has acted as an external scientific advisor/ reviewer for Pediatric Brain Tumor Consortium (PBTC), NIH and the French Cancer Agency. for the He is the Co-chair with Maryam Fouladi of the Collaborative Network of Neuro-Oncology Clinical Trials (CONNECT), an international consortium of 15 academic pediatric neuro-oncology centers. He has extensive experience in translational research, development and coordination of clinical trials and leadership of clinical research teams and networks. He has been the Paediatric Oncologist associated with the NHS Complex Neurofibromatosis Type-1 Service for over 15 years and has a specific interest in linked neurological associated tumours.

 

Marta Korbonits

Marta is an clinical academic endocrinologist working at Barts and the London School of Medicine and at Barts Hospital and she is specialising in pituitary adenomas and genetics. She enthusiastic about patient involvement in research and about postgraduate education.

Conference AIMS to S H I N E !
SHare, Innovate, Network, Empower; for ‘Brighter Futures for Childhood Brain Tumour Survivors ‘
 
By Creating unprecedented, novel opportunities for networking patients with professionals, parliamentarians and NHSE decision-makers to;
o Set standards for best practice and effect change 
o Influence health policy and health service research 
o Engaging with a like-minded ‘peer to peer’ community
o Be inspired by the ‘Survivor Voice’ across the age-span
o Benefit from innovative health service programmes 
o Debate with diverse health, legal, governmental and educational/employment experts
o Be educated and empowered in a novel, niche arena 
 
Sessional Aims 
 
Session 1:   Introduction 
Through the Survivor Voice and SUCCESS’ vision, introduce:
 
• SUCCESS’s concept of a multiprofessional recovery service, available to every child with a brain tumour, from diagnosis and throughout the developmental age span [to 25years] 
• The need to categorise recovery support by tumour location [deep midbrain HPAT vs cortical/cerebellar/pontine] not tumour grade 
• And within that, the need to gain equity for children regarding dedicated pituitary subspecialist diagnostic and treatment hubs for those 10-15 p.a. with rare pituitary tumours 
• The Survivor Voice on above aspects of care – their successes and views on  current service gaps 
 
Parallel Session 2: 
1. Specialist Pituitary Tumour Services Symposium
 
• To launch newly endorsed and published national multisociety guidelines for management of childhood craniopharyngiomas and pituitary adenomas 
o https://successcharity.org.uk/rare-endocrine-tumour-guidelines
• To create impetus for change and provide equity of pituitary-specialist care to children with rare pituitary tumours 
• To demonstrate need for, and benefit of,  a nationally commissioned specialist [hypothalamo-pituitary axis tumour] HPAT decision-making and treatment hub, alongside a health outcomes registry 
 
2. Specialist Education and Recovery Services Symposium 
• To highlight the role community physicians provide in streamlining educational and health care plans for those with other forms of acquired brain injury 
• To demonstrate the inequity of neurodisability assessment to those with brain injury from brain tumours 
• To discuss the rights to enhanced educational provision in the mainstream to all those with brain tumours 
 
 
Parallel Session 3:
 
1. Hypothalamic Symposium 
The main aims are to:
• showcase the ‘occult’ and potentially devastating midbrain hypothalamic injury which can occur from brain tumours co-located in that position – 
• highlighting the difference between focal midbrain and cortical/cerebellar brain injury
• the need to better understand the diverse effects of disrupted midbrain signalling of this primitive evolutionary organ as showcased in this seminal paper
https://successcharity.org.uk/a-40-year-cohort-study-of-evolving-hypothalamic-dysfunction-in-infants-and-young-children/
 
2. Survivor Workshop: Overcoming Barriers to Education and Employment 
• Survivor community share key barriers to gaining support in enabling them to reach their full educational potential.
• Education and legal specialists discuss how to ensure providers from mainstream schools, further education colleges and universities can be encouraged to provide the support required.
• This process will then be repeated with regards to employment.
• The panel will also include an Occupational Therapist discussing how such a service can be used to further the young peoples’ goals.
 
Session 4 
 
Key note panel discussion – 
Our ambition is for SUCCESS to create a ‘CHANGE’ working party to take forward with key NHSE and government figures, the two parallel recommendations developed throughout the day, and reporting annually on progress until we succeed! ; ie 
• National specialist commissioning of rare pituitary tumours with associated health outcomes registry  -[starting with commissioning and expanding the HPAT advisory service from GOSH]
• Endorse and implement alongside the acute treatment pathway, the SUCCESS vision of a multiprofessional recovery team and pathway, from diagnosis and through the developmental age span [as originally specified in NICE 2005 Cancer guidance
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