ComplexUs is a Think Tank focused on Improving the Lives of those Affected by Complex Neurodisability

Led by experts in the field, all of whom have lived experience in being primary caregivers, ComplexUs has an inside-out approach to policy making. Starting with lived experience, they promote and lead research which helps develop economically robust, creative solutions that add value and improve the lives of those affected by complex neurodisability.

WHO WE ARE

We are specialists in our professional fields and experts by experience as primary caregivers for people with complex neurodisability*.

We are a driving force for meaningful change for people with complex neurodisability who require the highest levels of care and support and rely on others to advocate for them.

We are a collective voice working in partnership with practitioners, commissioners and policy makers to pioneer credible solutions to a system which is not currently fit for purpose.

We recognise the financial benefits to ‘getting it right’. People with complex neurodisability make up less than 0.1% of the population but consume more than 5% of the total paediatric healthcare budget.

VISION AND MISSION

People with complex neurodisability have the shortest life expectancy of any group in the UK, their disability compounded by other factors of marginalisation.

Tired of failed, disjointed, top-down approaches, we are creating our own grassroots, practical, solution-based alternatives which are founded on true life experience. We work to influence policy, legislation and practice to raise expectations for people with complex neurodisability and their families, from birth onwards.

We will highlight issues affecting those impacted by complex neurodisability to bring about transformational change using,

  1. Our shared stories and lived experience
  2. Robust data and evidence
  3. Creative solutions which include economic considerations
  4. We will always add value, never duplicate what has gone before and focus on best practice.

WE WILL DELIVER ACCORDING TO THE FOLLOWING PRINCIPLES:

  • Holding the joy of loving a person with complex
  • Being solution focused and curators of positive
  • Committed to seeking out and amplifying diverse and seldom heard perspectives.
  • Driving improvements in systems, structures and practices as well as principles, ideology and theory.
  • Always considering the economic impact and promoting realistic sustainable change.
  • Highlighting and correcting the power imbalance between services (those with authority) and families (those carrying daily responsibility).

ComplexUs Executive Board

ComplexUs Executive Board is made up of women who are parents of people with complex neurodisability.

Sarah is the CEO of Simple Stuff Works, is passionate about protection of body shape and the use of specialist positioning techniques. A biologist and qualified teacher she has worked with families of children living with complex disability since the late 1990’s. Her work to develop a model to predict changes in body shape of children and adults with neurodisability is recognised internationally.

Sarah founded one of the UKs leading suppliers of therapeutic positioning equipment which is now exported to countries around the world. She also works with partners in low- and middle-income countries to support those living in less resourced settings.

She has developed a range of accredited training courses accessible to health, social care and education practitioners as well as parents and self-advocates. She has four children, the oldest of whom now attends a residential college for young people with learning disabilities… despite her Local Authority.

Helen is a Consultant in Paediatric Neurodisability and parent of three young adults. Her son was born with life limiting complex disabilities. This unique dual perspective has driven her to improve experiences for children and young people with disabilities and their families.

Helen works with the World Health Organisation, the International Society for Quality in Healthcare), the NHS England Strategic Coproduction Group and previously on the executive of CoLab, an initiative to improve the care of children with medical complexity. She chaired the national advisory group for the NHS Personal Health Budget Quality Framework, published in 2023.

She is co-director of MyCareBudget, a wiki for self-directed care budget holders. She is a Consultant at Great North Children’s Hospital, Clinical Lead for Health Inequalities and Associate Lecturer at Newcastle University. She works as a visiting consultant to Gibraltar Health Authority and previously set up paediatric services in Turks and Caicos.

Jessica is a writer and architect from London. She is the author of a memoir, The Cracks That Let the Light In, about caring for her eldest son who is disabled. Her essay about the implications of caring for a disabled child, My Body For His, was shortlisted for the Curae Prize.

Jessica has appeared on radio, including BBC Radio 4, BBC 5 Live and Talk Radio, to talk about being the parent of a disabled child, and has written for magazines including Good Housekeeping and You, and given lectures to, amongst others, the Royal College of Paediatrics.

Jessica is a school governor and was a Parent Advisor to The Children and Young People’s Health Partnership at Evelina London. Having worked as an architect in the UK and Qatar, she lives in London with her family in London in the house that she designed to be accessible to her son.

Shurron Rosales is an Equity, Diversity and Inclusion specialist, currently working at Macmillan Cancer Support. She brings a passion for social justice, inclusion and for creating equity for underserved communities and those who’s voices are lesser heard. She is particularly focused on Disability justice, anti-racism and LGBTQIA+ inclusion.

Shurron sits on the Strategic Prioritisation Board at the Human Milk Foundation. Her professional experience also includes a decade of High Value Fundraising experience for cancer charities, strategic reviews, and strategy development. Shurron’s expertise also comes from lived experience, being an unpaid carer for her son who has a severe learning disability. As well as coordinating his care, she is dedicated to challenging inequities and bias in the system, especially for those most marginalised.

Gabriella has over 20 years’ experience in planning, delivery, organisation and research in health services. She is uniquely placed to support schools, local authorities and health systems in responding to the challenges they face in SEND, learning disability and autism.

Her personal experience supporting a daughter with complex disabilities combined with professional expertise in national policy, gives a 360 perspective that ensures local areas are able to meet their responsibilities, whilst families remain at the centre of support.

An experienced senior manager within local and national NHS organisations, she has run large service improvement projects, managed community based and outreach clinics and large national transformation programmes. Gabriella is an experienced and accredited trainer and support broker, with expertise in behaviour science and systems design. As well as policy and transformation expertise, Gabriella holds independent roles within academic research, specialising in models of care, policy implementation and systems.

Rachel is the Founder/Director of Born at the Right Time, an organization aimed at improving the lives of those with disabilities and their families. She is a qualified nurse and the parent of a young man with complex neurodisability. She’s the author of two books including her memoir The Skies I’m Under, award winning blogger and host of the popular The Skies We’re Under Podcast.

Rachel is an NHS Peer Leader, Personalised Care Ambassador and was funded by NHS England to produce the Posture Positive report looking at the impact of Covid on 24-hour Postural Care. Her course on “Communication and Co-production” was finalist in HSJ Best Educational Programme for the NHS 2023.

She delivers CPD-certified training on communication and effective collaboration to delegates around the world across health, social care and SEND. She’s passionate about lived experience being at the heart of meaningful change using evidence and actionable next steps.

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