We are going to start work on a new websi... - Endometriosis UK
We are going to start work on a new website soon, what area of the Endometriosis UK website (www.endometriosis-uk.org) do you think needs the most improvement?
EndoUK_CommsModeratorEndometriosis UK68 VotersPlease select one:
Information for the partners of women with endometriosis.
Natural Treatment for endometriosis.
I agree information for partners and family
Yes, Yes, Yes, please have a page for our husbands - I know it is very, very hard for them to understand the amount of pain and emotional stress we go through , in my case, every day. It would be good for them to talk to each other.
Also please could we have a full list of support groups.
A list of the procedures, explanations and a place where we can contribute our experiences of them specifically. Perhaps fill in a short survey for each drug and feedback what side effects we had and what inpact it had on us and the endo symptoms. There is a potentially vast pool of untapped customer experience data that could be used to better inform future endo patients, above what is provided by the biased pharmaceutical industry.
Speaking of them...
A list of medications used on endo women with handy links to the official page of indications and contraindications and side effects.
Many of the drugs are administered at clinics and you don't get given any paperwork when you embark on the regime. In my case Zoladex. I visited 4 different health clinics to get my jabs, and I never once in all my visits was given any advice leaflets. When I visited the Astra Zenica website about Zoladex.co.uk, it was geered just for men as the drug is primarily marketed as a men's prostate cancer drug.
To access their website one needed to type in the code on the Zoladex packet that no patient ever sees because it is always administered by nurses and docs.
Not good enough in my view, and endo-uk should as a body be lobbying the pharmaceutical giants to provide better online information for endo women using their products.
My mother visited the GP practice to try and get information because I was so unwell on Zoladex. She came home last year [2011] with a leaflet dated 1998 ironically also published by Astra Zenica which was just pre-historic on its advice about endo, so much so that it stated the only cure was hysterectomy!! I just laughed in dispair. no wonder so many GPs are mis-informed !!
It's not as if I live in a backwater, that GP was just about 5 miles from where the zoladex is manufactured in the UK.
Perhaps a feedback section on the new website, where such incidents as these can be reported and followed up by the charity.
Regarding the 'partners' forum idea, I wholeheartedly agree with that. For parents and partners siblings, colleagues and employers.
Endo will impact everyone around the endo patient. They need somewhere to vent, ask questions, and get sound advice, just as we endo-women do.
Support (groups?) for partners of those who have endometriosis and access to current research being carried out in regards to endometriosis.
Also, information as to how one may contribute towards such research.
Some sort of directory of approved holistic treatments and practitioners would be really appreciated too.
info about research would be great and info for partners/carers x
A link to click so you can see new blogs /questions since your last visit. Also a link to click so you can easily view replies to posts you have left in reponse to other members blogs / questions. A bookmarking feature would also be useful so we can tag blogs we want to keep track of
Endometriosis social awareness
chatroom to come back
A section for healthcare professionals providing an up to date, one stop source of information about endometriosis, including signposting to other information resources like NiCE guidelines, training, centres of excellence, relevant meetings, etc. This can be be a registration only section to ensure the right audience is reached.
More patient stories explaining the impact of endometriosis on quality of life, relationships, work and social life, etc. Also stories from family and friends. I think video testimonies would be very impactful.
For added impact, following the same patients over a period of time (e.g 2-3 years) would help demonstrate the chronic, unrelenting nature of the disease. But some positive stories would be good as well, showing how people are coping and managing to live with it.
I am a filmmaker and fellow sufferer, I would be happy to help with video testimonials of personal stories for the website, as well as information videos or 'factsheet' animations etc.
EndoUK, please get in touch ellie.worldwide@gmail.com if you would like help with this.
