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Jane Green – Founder & Chair – Sussex Ehlers-Danlos and Hypermobility Support Community Group

20th November 2020

Jane Green Sussex Ehlers DS

Submitted by Becky Orpin, Sussex Ehlers Danlos Syndromes (SEDS)

Jane Green is autistic, and a single parent of two, one with severe medical issues and one autistic. Wanting to help other children, as well as her own, she volunteered with all ages to gain experience and study for her degrees. Jane worked in all phases of education, including epilepsy and autism schools. During her PGCE she was the first person to give a presentation on SEND to her colleagues.

Unfortunately, her illness worsened, and she had to retire “medically unwell” in 2015. Following this, she finally received diagnosis of Ehlers Danlos Syndromes (EDS), but sadly had no support as her illness was not officially recognised at that time.

She started volunteering for the national EDS charity, but wanted to do more, so founded SEDS (Sussex Ehlers-Danlos and Hypermobility Support) in 2018. The group is an active, award winning community group that has already helped save 6 lives, including 2 during Covid-19, and this year saw it introduce its first patron, Dr Jessica Eccles from BSMS in Sussex.

Ages of members range from 6 weeks to 88 years, and many members suffered from anxiety during lockdown, as some, like Jane, were injured, ill or carers, as well as being autistic.

Jane spent time designing innovative Covid-19 alert cards for people with health conditions whatever they were, as larger charities were unable to produce them. The cards are for autistic people, family friends, carers and essential companions, plus professional social workers from BASW. The cards were used by local charities, national organisations and internationally. They now sit on the Dept. Health and Social Care autism guidance and are hosted on national websites. The process of designing these cards cost Jane money, but they were generously given out for free to whoever requested them.

Outside SEDS, Jane also volunteers her skills as a carer trustee for a local carers charity, and is an “expert patient” for various other committees, patient ref. groups, clinical commissioning groups, NICE advisory committees, and social care round tables.

She has sat on various guidance on autism from child to adult transitions, and has overseen new co-production autistic led social care tool kits to embed the NICE capabilities.

Covid-19 has seen Jane busier than ever, and although at cost to her own health, very much needed, as these patients are the forgotten ones with already chronic illnesses and injuries.

Very often girls and women have been labelled as ‘complex’, and ignored, and so Jane liaises with health providers from CCGs, to hospitals, carers charities to musculo-skeletal depts.

Jane is helping to improve guidance and signposting and hopes this will help to create better outcomes for all, so that others won’t have to suffer as much as she did.

Jane spends her time liaising with Covid-19 research to improve communication and outcomes for those not shielding, but still unable to receive help. This is an ongoing process.

Jane has been awarded the following in her role as carer:

  • OU Adult Learners Award ‘in celebration of her remarkable achievement in learning and recognition of her inspiration to her tutors and colleagues’
  • AOUG Regional Award ‘for outstanding achievement and dedication in her OU work’
  • Local Hero Awards 2019 Crawley - Winner
  • BBC Surrey Sussex NE Hants Carer 2019 - Runner Up
  • Applauds Awards Lifetime Achievement 2019 - Runner up

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