Vasculitis UK

A response to your concerns about the new HealthUnlocked

Hi everyone,

After the lengthy discussion yesterday around the new HealthUnlocked, I thought I'd step in to comment on some of the bigger concerns people have to clear things up a bit. It's always best for HU to respond directly since we have much better insight on what is going on with our site ("the bigger picture") than individual admins do, understandably.

I want to start off by mentioning that creating a new HealthUnlocked site was imperative. The old site was reaching a capacity that meant we could simply no longer handle the amount of users we had without it having major effects on the site's speed and functionality. We needed to think big because HealthUnlocked is quickly going global - we recently launched our site in Spanish and Portuguese!

Many of the changes we've made to this site were actually in response to continued feedback from our users and admins. That's why we always recommend that if you have an opinion on something, please speak up! We want to hear from you.

Here are some comments on particular issues you've mentioned:

- The community seems quieter than normal: There is one main reason why traffic to HealthUnlocked has slowed, and it is because of an issue we simply have not been able to solve yet - issues with daily notification emails and notification emails in general. We are still actively working to bring everything back to normal.

- News feed as the home page: The main reason for this function is for the many people who are part of multiple communities. It gives a place where 'feeds' of all communities you are part of can be gathered in one place, similar to the Facebook timeline homepage. If you aren't part of any other HU communities, you can access the community directly (skip the news feed homepage) by going to I'd suggest to bookmark this link or add it to your Favourites.

- Accessing old blogs (posts): We apologise if you are under the impression that your old information is lost! This is absolutely not the case. At the moment, we haven't been able to focus our efforts on making sure you can see all your old content, but I assure you that as soon as we are able to, we will make it all available and easily searchable

- People in my area: This is a functionality we have done away with since, to be honest, it was something that was hardly used on a larger scale across HealthUnlocked. We do plan to reintroduce something similar to the sort, but we still need to work out the functionality of it.

- 'Read a post' indication: This is a good idea and something we can consider implementing. Thank you for the suggestion.

On behalf of my team here at HealthUnlocked, we want to assure you that we are listening to you and doing the very best we can to get things back to normal, or even better than that, as quickly as possible. It is true that, being a very small team, the creation of this new site was a HUGE job to take on that had unforeseen circumstances that have caused us to be held back from where we had hoped to be in our progress to this point. But I assure you we have your best interests in mind and want this site to be the best it can be! We have some pretty huge aspirations, it's just taking a bit more time than we thought to implement them.

Please feel free to share your thoughts on this - if you have specific feedback it's always best to contact our support team through this form here:

Best wishes,

Lora S.


Communities Team

9 Replies

thanks laura for that response,very informative and helpful

its just a shame,that it had to take a post with lots of responses to get the ball rolling

think there is a lesson for all of us there

thanks again

1 like

Hi quinnster. Do you mind clarifying what you mean by "get the ball rolling"? I understand that clarity was needed to you all, but keep in mind we've been working extremely hard this entire time, so in terms of the action side of things, nothing has changed there.

If you need to know something, just ask! :)

Hope that helps.


Thanks a lot, Laura

I've been feeling my way into using the revised forums. It's taken me a while to feel more at ease again. But I'm beginning to get the hang of things.

I can see benefits already, due to the revisions I guess. I was on the lupus uk healthunlocked forum from its earliest days, and saw activity pick up as time passed. My feeling is that activity will pick up, generally on all the HU communities (6 of them!) i attend, given time. I'm very glad my previous posts etc will be available again eventually.

Your forums are hugely important to me. Seems to me, you have a big job on your hands, running all these communities. Thanks for explaining how things are going, and what will be coming through soon. And thanks for everything you do that helps me feel less isolated while I cope with my health stuff, and also helps me feel that maybe I'm making even the slightest positive difference for others in similar boats to mine.


Thankyou for your information. Always good to feel part of the changes and alterations on these sites and being aware of the changes. I feel confident to use this site and post my worries and concerns knowing that i do or will get support from these forums. I was alone and isolated earlier this year , especially where i live and knowing i can use these forums and recieve support is wonderful! Thankyou and keep up the hard work in maintaning these sites for us! :-)


Thank you all for the kind words! We are very happy you continue to find HealthUnlocked useful.


I just want to thank you all for this site. In Australia, we have nothing like this and whenever I need advice I turn to Health unlocked UK. I am very grateful for the support and new information that you are providing me in the antipodes as the disease is not widely known here by anyone. I worry about my daughter. I have had help from this site which has been invaluable. Whatever you do with the new site can only enhance this wonderful service. Thank you from my side of the world.


I'm so pleased to hear that the Vuk HU site is helpful to vasculitis sufferers as far afield as Australia. We used to have contacts with members of a couple of Australian vasculitis support groups, but everything seemed to die out for lack of practical support, which seemed a great shame. If you think there might be some benefit in rekindling an Australian group, we'll do whatever we can to support - at a distance of course!!.

John - chair, Vasculitis UK


thanks Lora.


Ok I am back. 3 months after sinus biopsy. Inconclusive. But in my gut I feel something. No kidney problems. No sinus for 6 months not aches or pain. But c ANCA score higher the those on meds. Doctor said wait. I have no kidney sinus or remitoid problems. The dr that took my biopsy said let do it again. OMG it was terrible. So I sit and wait? Hello help and advice needed.


You may also like...