Dated site

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Dated site

Postby jonathanb » Tue Feb 24, 2015 5:07 am

Hi. At the risk of offending people, which is not my intention, I feel a need to say that the site is looking tired and dated.
Has anyone taken a look at the CAH is us site for Great Ormond Street patients? Our kids aren't patients there but we found the site by accident and it is so useful and informative. There is access to useful, downloadable leaflets and emergency care letters that we simply have not been aware of or had access to prior to finding the site.
I feel our kids now have access to better medical care due to the info gained from the site, I downloaded all the emergency care leaflets and letters and used the info, whilst having to remove all reference to GOSH and contact numbers. I even got the emergency protocol up on my mobile recently to show an a & e doctor as he was unsure how to treat our daughter. I assure you he was grateful and I feel it could have saved our daughters life as she was unconscious with a blood sugar level of 0.9 on arrival. My knowledge of and access to the site meant her treatment was administered in a more timely manner.

It would be great to have the same, easily accessible info on here.

I'm addition their FB page is great for keeping up to date and users, paticularly teenagers would find it far more accessible and usable to ask questions and chat to each other as it's a medium they are comfortable with.

Can anything be done? I would love to help if needed but the site administrators need to make the first move and regulate / update any leaflets and downloadable information.
jonathanb
 
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Re: Dated site

Postby Sue Elford » Fri Feb 27, 2015 5:36 pm

Hi and apologies for the delay in responding to this post.

I agree, the site is looking a bit dated and we are looking into this! We are however a charity (not a business) which is run by a few unpaid volunteers, with limited time and resources. We are not trying to compete with anyone and there are (as you mention) some other very good sites available for people to gain helpful information.

We do provide a free information pack for all families and this includes various leaflets/booklets and also a CAH Therapy card, which informs both parents and medics what to do in an emergency and if the child is ill or admitted to hospital. A supply of our leaflets and these cards are distributed to endocrinologists throughout the UK for supplying patients but obviously you were not given one, hence you having to copy information from a website, which is unfortunate! I am currently liaising with the Society for Endocrinology regarding a new adrenal steroid card which will be recognised throughout the EU and we hope to provide this to all our members soon. Watch this space...

We do hold meetings/conferences and also put families in touch with each other. I know there are various media network sites that have forums, should people prefer to be put in touch that way. We take our responsibilities seriously and unfortunately do not have the manpower to police something like that but do have a forum on the website, for people to post here if they choose, although a lot of people do prefer to make contact direct and not post on a public forum - everyone is different and I respect that.

If you let me know your postal address, I will be more than happy to arrange for an information pack to be posted to you.

Thanks for your interest in the Group and please do visit the site from time to time and feel free to post comments to express your views and experiences. We all learn so much from each other! Hopefully (in the not too distant future) you will notice some big changes to the site too!

I hope your children are keeping well and thanks again for posting :D
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Re: Dated site

Postby jonathanb » Sat Feb 28, 2015 9:10 pm

Thanks for the response, the site is and has been an invaluable source of support for us. It is frustrating not having anyone local to talk to. I would love my kids to grow up knowing they are not alone in this; social media is possibly an answer to that, something with a more immediate connection.

I am constantly frustrated by the lack of info / support available through our endocrinology dept at Sheffield. I have a great deal of respect and trust for the team and their knowledge but it remains that we have no access to the support documents and I only stumbled on the GOSH site by accident. I worry that other parents in our locality ( if there are any!) have no knowledge that these great sources of support exist.

Thankyou for your offer of a pack, I will PM you an address.

Angie
jonathanb
 
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Re: Dated site

Postby Sue Elford » Sun Mar 01, 2015 12:53 pm

Hi Angie

I do understand your frustration! We do provide posters/leaflets/therapy cards to all major hospitals (paediatric and adult teams) and Sheffield Children's Hospital is included in our mailing list. Often it is the endocrine nurse who passes on the information about support groups etc to families so maybe I need to look into contacting her direct and providing her with a fresh supply!

I will ensure you are sent an information pack, which I hope you will find helpful. :D
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