SEDSConnective improves and actively supports the lives of people with SH
EDS, HSD and ND (primarily autism, ADHD, dyspraxia, TS) and associated conditions, families and carers, in health, education, social care, employment and transport accessibility.
We collaborate with professionals, researchers and advisers in these allied fields, with organisations and other charities in mutual reciprocity.
We aim to raise awareness and acceptance of our issues in health, education, social care, employment and in transport accessibility through connection to allied professionals, advocacy and research.
We are independent and mainly experience by expert led from Board down but operate co-productively in essence. We operate at general member level supporting with advice, signposting and empowering members to understand but also in the local region actually actively support by uniquely funding specialist activities and therapies.
More widely we support with advocacy and signposting, with our own publications, research collaborations, leading research from our Patron Dr J Eccles and her team, webinars and professional talks at conferences. We sit on various organisations and Boards as respected specialists in this area to actively support us, ‘nothingAboutUsWithoutUs’
We work in highly collaborative ways to make transformational change leading to better solutions and outcomes both locally and globally. We not only have EDS HSD and/or neurodivergent but have established specialisms in these areas or allied areas like education, health, social care and or established disability advocates.
Our Story: Jane Green
On 26th June 2018 Jane founded SEDS (now SEDSConnective) to increase local specialised support and improve awareness, knowledge and understanding of EDS/HSD/JHS and co-occurring conditions. To advocate knowledge and understanding in key areas of health, social care, education, employment and transport accessibility locally.
Jane left school early with only 2 basic qualifications at age 16 and was considered dim. After bringing up her children, both ill, whilst studying online to do degrees and working and bringing up her now adult children, she continuously suffered strange injuries and illnesses. She was disbelieved to be ill/injured and had to turn down the chance to do her Doctorate due to health issues but continued working in education. She taught at St Piers special epilepsy/autism school, advisory autism teacher in the Local Authority, Lead educationalist at NAS, steered and led out the social model of the Autism Education Trust training, Autism consultancy for Local Authorities, Autism Accreditation assessor and Assistant Headteacher plus professional speaker.
Her health continued to decline and after being labelled ‘bendy' she was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia stopping her career in 2015. Only then she received a diagnosis of EDS3 now hEDS, but immediately discharged as there was no defined treatment protocol. Although very ill, she felt there would be others out there like her who must also be overlooked. She realised there was a need for more local active expert by experience led support and is a great proponent of coproduction, so enthused others to join her and SEDSconnective was born.
She is in demand as has a vast experience of sitting on Boards, Trusts and orgs. in health, education, social care, airport/train accessibility and employment areas. She is currently a Trustee at the Social Care Institute of Excellence, CarersSupportWestSussex, Autismconn. She has been on the work expert reference group and CoChair of the Strategic Oversight Group for the Oliver McGowan Mandatory Training in Autism and LD, which she keenly felt needed EBEs involved in. She is also theme adviser for NIHR ARC KSS on social care and coproduction, Policy lead for autism at TimeForAutism at Brighton Sussex Med. School. plus Health Education England projects and programmes for training medical practitioners and peer support projects.
Jane voluntarily led out the first ever school toolkit content for 2 other charities during Covid and has written many publications and is now involved in research and a collaborator on other papers. SEDSConnective won awards for their innovative work and helping to save lives during the first lockdown and since then. Their resources still reside on the Dept. for Health and Social Care and British Ass.of Social Workers.
2006 she was awarded the South East Open University Regional Award and Adult Learner Award for my outstanding achievement and dedication. Crawley Heroes award 2019- winner
BBC Surrey, Sussex, N Hants- Carers award 2019 commended
Applause Awards – Lifetime Achievement/Stronger Together/Stronger Communities/sports awards 2019, and 2020.
Helpforce National Hero Award for covid work supporting others without a break in Sussex and nationally with DHSC and health groups. 2020
High Sherriff of West Sussex – for outstanding activity and contribution to the community 2020
Henry Smith MP - Crawley Coronavirus Community Champion for outstanding support in our community during covid 19 2020 and helping save lives
Mid Sussex Community Champion SEDS and Jane Green for going above and beyond for your community during the coronavirus crisis 2021
In 2022 Jane won the AK) autism Heroes’ awards for best support group and the Peoples’ awards
Education psych. UK 2nd Most Read Blog on hypermobility despite a covid year in the UK.
20 articles and publications, press, tv BBC news as a spokesperson, LBC, radio promoting the issues of hypermobility and/or autism.School Toolkit for hypermobility
Autism Cards/Help Cards, companion cards, prof. Cards. BBCI360 turning it gold for autism acceptance day.
MA Ed. (Leadership and Management), AHT, Autism
Adv. Dip.Ed. (Child Development)
PGCE Sec. QTS
BSc. (HONS) Psych. OU
Patron of SEDSConnective
Dr J Eccles
Jessica Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BA in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and following an NIHR Academic Clinical Lectureship is now a Clinical Senior Lecturer in the department of Neuroscience at BSMS. She holds an honorary clinical contract with Sussex Partnership NHS Foundation Trust where she works in the Neurodevelopmental Service. Alongside colleagues, she also set up the Immunopsychiatry service at Sussex Partnership NHS Foundation Trust.