I’m not particularly " Tech savvy", but I do seem to waste a lot of time looking for what I want to find.
It won’t stop me using it though because it is such a brilliant place and I feel like I may need it for the future.
Hubby
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I have just about given up on it.
What other site requires users to sit through endless tutorials to master it?
I miss the support and friendship I found on the old forum.
What hurts the most is being lectured by young, fit, tech-savvy people who don’t understand the problems of older, tired, often disabled users and carers.
If any site should be simple to use it is one for Parkinsons…and it used to be.
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It would definitely help if the site was easier to use. It’s a shame it’s so complicated because those of us with PD,or close to someone with PD have enough issues to deal with anyway. I do genuinely feel that if the site had been like this when I first joined I would have given up altogether - and that would have been a real shame as I have gained a lot of support and information from talking with others with PD. I’d hate to think of vulnerable feeling newcomers in need of similar friendship and support missing out on something that at heart good; and so needed. Daffy
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Must say I look but hardly ever post now…find it all confusing. …
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After having worked as a solution architect in the IT Industry I would like to play devils advocat here. IT is a very dynamic industry and I am sure there were very good reasons for the upgrade (change), probably things like security, hardware/software compatability and supportability of the whole system. I also know that alot of very hardwork would have gone into the upgrade by the project team at considerable cost. I also suspect that some comments on here will be extremley hurtful to those that probably worked around the clock to implement the change. The bottom line is like it or loathe it, this is here to stay and we all have to work together to make this invaluable resource work. Not sure what the answer is but as a starting point the IT management of Parkinsons UK need to provide more assistance for those that need it. Rather than firing out lengthy work instructions, what about a weekly conference call were people can ask questions and be shown via a screen share how to do things. There is to much negativity on this subject so some leadership needs to be shown. Hope this isn’t taken badly but I can see both points of view with this
Hi Jackson,
Thanks for your feedback on the forum. I appreciate that you and a few of our other members are still finding it hard to use the forum which is why we created a few short tutorials to help some of you out on this. How to use the forum - Tutorial videos!
@Wildrover is right about the changes to the forum, we changed the forum software to improve security, accessibility and design. The software for the Parkinson’s UK website had to be updated, therefore, the changes to the forum were unavoidable. Regarding the membership programme, as we are still in the planning phases of this, we are communicating a lot of this information via our local groups, however, you can find information on the programme here - https://parkinsonsmembership.commonplace.is/ ]
If you’re referring to the self- management course, I believe we’ve spoken about this before - were you able to enrol in an online course? I know this wasn’t ideal for you, but it still might be worth exploring if you haven’t done so already.
I have made a note of the comments on this thread and will feed it back to my team to explore more ways in which we can make the forum more user friendly.
Best wishes,
Reah
Hi Reah,
I do re-read my comments and cringe occasionally as I am aware that I am stuck in a negative spiral - I need to take my doom goblin tendencies in hand - and it is not my intention to criticise people working on the forum and trying to support those of using it, but accepting that change is inevitable, I still don’t understand the selection of this particular forum host in the first place. I can’t find any accessibility options and the design is less user-friendly than the previous forum. Anyway, it is what we have and it is a valuable resource but it is really sad to read posts saying that people feel that they have lost access to something that was very valuable to them, and it really isn’t as vibrant and lively as it was. Is there any way of changing the layout so that the topics and posts are easier to see and access and is there any way to reduce the clutter on the screen? I just touch everything on a bad day and I lose the will.
I understand that there have been attempts to support people in using the forum by providing video tutorials and I appreciate the effort but the point is that more than a few of us, I suspect, will give up at the thought of having to access a video tutorial in order to access the forum. Accessing video tutorials is a whole new challenge that I just don’t need at the end of a day struggling with all things tech at work - and my symptoms are really quite manageable at the moment. Is there any way of making this forum more suitable for all of its users bearing in mind the demographic of people who have Parkinson’s? If digital is the way forward, and it seems that it is going to be, then resources have to be fit for purpose which primarily means that they must suit all user’s needs. I think that in this instance this would be an uncluttered and intuitive layout requiring as few interactions with the keyboard or screen as possible in order to access the desired information.
I didn’t join an online self management course, the online aspect doesn’t make any sense to me but there isn’t actually one targeted at my area anyway. I know I have mentioned this before but when I look at what I am supposed to be doing in order to be more positive and more in control then self management courses keep coming up so I keep looking into it (and unfortunately I then get back on my soapbox :-S ).
Thank you for getting back to me and genuine thanks for the work you put in in order to support those of us who are prone to whinging a little :-S ok, whinging quite a lot in my case. I will try harder.
Thanks again
J
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I understand what you are saying and don’t particularly disagree with much of your comment and I also know many people dislike change but, whilst I don’t have your expansive IT skills, I am used to working out how to do things on computers. I am new to the forum and have not found it easy or especially intuitive but am able to do what I need, although I doubt I am doing so in the most efficient way. My concern is that whilst I am happy and willing to give it a go, those less comfortable with technology, or maybe newly diagnosed and trying to find someone to talk to, or who perhaps doesn’t have the strength to stick at it while trying to work it out etc., may well be put off. Security and all the stuff you mentioned is important but surely the forum has to be user friendly (if I might use that awful phrase) to the lowest common denominator so all can use it easily otherwise it’s reason for being is in my opinion compromised.
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I don’t use this site as much as the old one.The old saying if it’s working ok don’t try to fix it ,I myself have lost a lot of the old users these users had a great deal of knowledge. I think we should put it to the vote to bring old site back
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Dont disagree one bit, i am pretty sure if the project was to be started again, more engagement would have been made with the users and their input taken on board. Like i said i dont know the answers. We are were we are and somehow it needs to work.
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Just to add most IT projects have their problems but especially difficult given the user base on this one. With all the negativity surrounding this i expect there is quite a large lessons learned document. In my opinion its what happens next that counts.
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And I have no disagreement with that!
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@Wildrover you’ve hit the nail on the head, big mistake. If there was little or no user engagement, no surprise it is not user friendly. As someone who works with IT every day, alongside IT professionals but is not an IT professional, the forum strikes me as a forum designed by techies for techies. The main Parkinson’s UK site is excellent and looks good, easy to use, all credit to the developers. The forum unfortunately seems to be an afterthought.
And yes, what happens next is the important bit.
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Hi all,
Thank you for your comments and feedback on the forum. Although we used the help of our members to test the new forum during the planning process of the upgrade and the feedback was really positive, I do however, take your thoughts on board and will feed it back to our digital team so we can look into this further.
Please feel free to share your thoughts on the forum with our feedback team as well at [email protected]
Best wishes,
Reah
Now I get a weekly email, I do sign onto the site a lot more.
So MORE for me.
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Someone mentioned things are difficult to find. I agree, I view the forum on an iPhone and in my opinion there needs to be more white space between the different forum categories. Also, if you are logged out its difucult to find the forum again, the “Forum” link word to the forum needs to be more prominent.
I’m in my forties and have basic web design skills, I work with computers, databases and spreadsheets all day, even I find it a little difficult to navigate. I don’t think it needs major work, just a redesign of the main forum categories page to make the different categories easier to see.
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I thought people with Parkinson’s have trouble getting stressed and anxiety and find it hard to use there hands and this new site is all that one big headache sorry
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On one of my rare visits to the new forum…I see a request for members to make a video of themselves and send it in.
One question…have the admins of this site ever met someone with Parkinson’s?
Make a video?
Many are struggling to use a mobile to make a phone call!
How far removed from the reality of PWP’s lives can this organisation get?
I’m sure some techies will carry out the task and work out how to send it in…but how many others will feel excluded and sad that they can’t even take part in activities on a forum meant to be for them?
GG
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I do think this site is very hard to negotiate, without asking to film ,but I think what would be a real eye opener for everyone else with and without pd .If pduk get together with people who have gone through dbs they make a 1yr 3yr and 5yr video by professionals of everything and all the different stages of the real meaning! ON and Off .Pduk could work with the hospitals who have the video footage. If interested I will give my permission and I think other people dbs would agree. It shows dyskinesia, gait,stiffness, tremors and dystonia .
Hi,
I like tech and can see that it has the potential to offer real benefits to people with a range of health conditions but I personally feel that it’s being seen primarily as a cost cutting vehicle which means that many of the tech strategies and solutions being implemented are merely going to serve to leave me sitting accessing help and company via a computer or smartphone that my hands are frequently at war with - though I will be very cost efficient because I won’t be able to access any of the online resources designed to help me self-manage. The 'digital revolution ’ could be really exciting when you consider the developments out there but instead the whole concept just fills me with dread and something close to despair.
Dexterity issues are hardly uncommon amongst those of us with Parkinson’s, and I know we’re all different but I suspect there’s more than a few people out there who, like me, could almost start World War 3 with a smartphone (and my symptoms are still manageable :-S).
I think I’m beginning to sound like a broken record but if we are to be able to access the digital world, I personally feel that funding should be aimed at developing devices that people with poor dexterity and potential speech issues can actually use in the first instance.
And I am sure that there are things in development that would offer genuine access; maybe it all comes down to money - who knows. :-(. Jx
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