Community support

We have a closed member Facebook group Sussex Ehlers-Danlos Syndromes   

An open Facebook page for interested people or professionals at  EDS/HSD at SEDSHSD 

We’re on Twitter too @SEDSHSD.

Also on Instagram Sussex_EDS

Contact us - admin@infosussexeds.org.uk

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FAQs

I think I have HSD or EDS what do I do?
We suggest you read the EDS criteria and also the EDS RCGP toolkit. Write down your symptoms and any family history. Make an appointment with your GP and describe the symptoms and if they are unaware of HSD/EDS alert them to the EDS RCGP toolkit. It might need a second appointment to do the assessment. Sometimes your GP will not be able to do the assessment and will refer you to a rheumatologist.  If you want you can pay and go privately.​

 

What do I do if the GP refuses to diagnose or refer me?

You are allowed to ask for an explanation or ask the Practice Manager or Patient Representative Group. You are allowed to ask for a second opinion.

How do I get physiotherapy on the NHS?

You can self refer to Musculoskeletal (MSK) Physiotherapy departments. This can be done online on by phone.  Waitings times vary.  You are usually seen for a set time and then discharged. 

How do I get hydrotherapy on the NHS?

You can ask to be referred by the GP, NHS physiotherapist, possibly occupational therapist if you have one.  There are hydrotherapy pools in Horsham, Haywards Heath, Brighton.

How do I get on a Chronic Fatigue Syndrome/M.E. programme on the NHS?

Email: SC-TR.CFSMESussex-WidService@nhs.net

How do I get on a pain management course on the NHS?
Find out here

How do I get a counsellor to talk about my condition and/or my mental health?

You can self refer in West Sussex 'to time to talk' counselling, or get a referral to 'Relate' counselling in Crawley.

Where can I find out more information about EDS/HSD?

Feel free to join EDS UK Support, or HMSA, the UK Charities, to find out about other research and facts plus national news and events. 

How can I make sure that my conditions are known on admission to hospital?

Both EDS UK Support, and HMSA  have EDS/HSD specific alert cards,

You can register your health information on your smart phone via medical ID.

Also a generic non specific medical alert card has been created which you can access from here

How do I make a complaint about my GP 

Check your understanding of what is wrong and then ask for clarification from the Practice Manager or Patient Representative Group. You can do this by 'phone, email or letter.
More information

How do I complain about an NHS department?

You inform the administration of the department directly or lead.  You can also contact the Patien Advice Liaison Service, PALS.  Other avenues are to contact Healthwatch West Sussex or SEAP or your local Clinical Commissioning Group

How can I make a difference with SEDS and awareness?

All patients should be allowed to join their patient representative group part of the GP primary care service.  

 

How can I help SEDS?

We are always looking for helpers and funds to support us. If you have an idea for a fundraiser, would like to donate or have some free time to help out us achieve our aims. Please contact us via our Facebook page 

Handing out leaflets, asking Practice Managers, schools, libraries, supermarkets to put up a leaflet, all helps raise awareness. 

How to contact us?

Via the ‘Sussex Ehlers-Danlos Syndromes (SEDS)Facebook page. 

Don’t forget to like our page too!

Fundraising support

We are very grateful to the fundraising support we have had from Healthwatch West Sussex, The Longley Trust, Waitrose community matters, Magic Little Grants, Local Giving, Coop, Sussex Police Property Act Fund and the Sussex Community Foundation. We also thank local Radio stations BBC Sussex, Meridian FM, BBC South TV, BBC South East, Crawley Observer, East Grinstead Gazette and Horsham District Post.