As with several other members, I am not at all keen on the HU site, and tend to go on there only occasionally. The HU site is not limited to members of NRAS, and it is good to know that NRAS are keen to help those outside their organisation. However, I do wonder why NRAS give advice and answer questions on HU and do not afford the same priviledge to members of their forum. I have noted two questions on HU recently, which have had full and helpful advice given by NRAS. I appreciate that NRAS can't be all things to all men, but it would be good if the NRAS members could receive help with queries. Perhaps a "Questions" thread which NRAS could help out with from time to time?

I couldn't agree more, Jenni. I fully support and endorse everything you have said. I have long thought that NRAS consider this forum to be a peripheral part of their work. I also agree (and there are so many others of the same mindset) that HU contributors are often more supported than those of us who give so much to NRAS not only through our work as volunteers but fund raising and membership payments. xx

As always, we are keen to respond to anything that Members raise as an issue on the forum. However, we cannot read every single post and are conscious that it is a members only forum, so NRAS will only intervene/comment when a specific issue is highlighted to us by a fellow forum user. If members have specific questions/RA related queries we are very happy to help via the Helpline (telephone or email). Those visiting HU will not always be members and as such may not be aware of our services and it is an ideal opportunity to raise the profile of the charity and the help it can offer to a wider audience. HU is not for the exclusive use of NRAS members, therefore people must be given the opportunity to have their query answered, be aware of NRAS but not feel pressured into contacting us directly if they do not wish to.

We do not ever offer advice, we are not medically trained to do so.

While the members’ forum can often be referred to as the largest NRAS group, it does not generate any income for the charity, but is part of the benefit of being a member along with the magazine and opportunities to take part in activities. Membership currently just generates enough funds to cover the cost of membership services but does not generate any additional income.

The HealthUnlocked platform is an open blogging platform that sits on our site. It is managed by an external company who work with many different disease specific charities and organisations. It has the potential to do so much more than it is currently offering and we are working closely with their team to help to create additional features. Currently it provides a useful tool to compare hospitals in relation to their treatment options, waiting times, additional support services and staff – based on the evaluation of other users, this is not something that the NRAS forum is designed for. In the future we are hoping that there will be a platform to monitor and track a patients’ progress through the system, their DAS scores and their experience of specific drugs... exciting additions I hope that you will agree.

This really is a very different service, it is in the public domain so can be used by friends, family members and other interested parties for a wider view of the disease and its impact, and it is not a forum – it is a blogging site.

I hope that those forum users who wish to use HU will embrace the good that it has to offer. If it is not for you, you have the comfort of continuing to use the members’ forum.

Rich

Thank you for your post and alerting us to the fact that the blogs are not appearing on the NRAS blog as well as on HU. You are quite right, they should be available on both sites. We will rectify this and ensure that all blogs are posted on both the NRAS site and the HU site and will also work to copy across the 'missing' blogs.

Hello Everyone

Richard I think has highlighted an issue which we and the senior management were unaware of, i.e. that our blog was not also on the main website as well as in the HealthUnlocked area and we have made immediate arrangements to update the main website and ensure that our NRAS blogs are repeated there as well as being in the HU area. Thanks for bringing this constructive criticism to our attention Richard.

In regard to the HU area generally, let me try and bring some perspective to this debate which has started. Horses for courses is exactly right. As a charity we work hard to provide a broad range of services for everyone in addition to providing membership benefits which are exclusively for the members - the recently launched Members' Care Plan which is free of charge to our members is a good example of an additional benefit introduced this year. We are also working on future membership benefits, however, we have approximately 3,000 members and there are about 700,000 people with RA in the UK and in order to benefit all we have to serve all. This forum is for you to be able to have a safe and protected area to exchange communication with each other and you have made it clear in the past that you don't want NRAS dipping in and out of it all the time although, as you know, we have a duty of care and governance to moderate the forum. All members also have totally free of charge access to our HU and can take advantage of all the things on offer there as well as having free access to our helpline, our email enquiries and you have exclusive access to the magazine and the e-news.

I am at a loss to understand why you would not welcome the addition of new facilities which can benefit you equally as well as any other RA sufferers in the UK. It is our intention to further develop our membership and our HU area (as well as our main website and other front line services). We are going to be adding a symptom tracker and hopefully in due course, patient reported outcome measures to the HU area so that people with the early signs and symptoms of RA can track their symptoms easily which we hope may facilitate earlier diagnosis. This is something I am sure you will all understand the importance of and welcome this innovation. Currently the average time from symptom onset to getting started on DMARDS is approximately 8 months. This is unacceptably long and we are doing all we can as an organisation to address this issue. We shall be launching a public awareness campaign in collaboration with Arthritis Research UK hopefully around the end of October.

The facilities we have been able to provide on HU are innovatory and important and are helping NRAS to reach a wider audience of people with RA. We hope that many of them experiencing help this way will value this area and in due course become members so they can get even more benefit by being able to access this Forum and the other exclusive benefits of being a member of NRAS.

I hope this has helped to clarify things.

Best regards
Ailsa Bosworth
CEO, NRAS

Hiya Ailsa and Katy (the not so new gal) [you need to read HU to get that comment]

Thank you for your extremely quick response ..there is proof that the forum is read if any was needed.

I personally think information should be accessible in as many different forms as possible , and the success of HU is testament to the fact that people access information differently .The fact i rarely post on HU does not make it any less valid a medium , however like all blogs i dip in and use it as required , and if i feel the need... I comment.Invariably i just read.

I do get the regular updates from there by email , and posted my Hardest Hit March blog on there (in a slightly different form) so as to raise awareness of something which only made the national news for a day (BBC one coverage seemed to tail off after the early evening news).

People have the right to know these things whether members or not ..In fact my blog appeared in various forms on different forums including a photography forum ... again raising awareness.. where it got a fantastic response from some people i was surprised at

In trying to get a message out to a wider audience , it is essential that there are totally free services available too .

I have also looked at Arthritis care and used that for a while , and again decided it was not quite what i wanted.

I tried facebook but detested the personal information trade off and targeted advertising that comes with it , and so hence do not use that any more .. again my choice .. but 3/4 of a billion people disagree... see Facebook Statistics

It would be interesting to see how many HU contributors/readers have actually converted to NRAS membership , but this is of far less importance than the raising of awareness of RA and the daily help that the HU site and other information mediums give to people.Membership income is also only a fraction of generated revenue.

I for one welcome any such free services in addition to this unique NRAS Forum, even though i personally prefer this one above all the other options......and isn't that what life/health care and anything else you care to name is all about ?...having options!


Rich :)

We do welcome additional facilities, especially the free ones, but people don't have the time to use them all, that is why we were asking if the information could be put on each site, not just on one, then we can all benefit.


Doreen xx

I think maybe the title was a bit misleading Jean?

Maybe it looked as if it was a "them against us" topic, which certainly wasn't intended.

Doreen xx

I thought this was just to air views on what we preferred and why :).. now that the posting of information in both places has been resolved so quickly by NRAS :)
Can't beat a good debate amongst friends :)

.. and a small point i might disappear for a couple of weeks due to funds , but i will be back :)

Rich :)

Thanks Jean .. only a temporary blip .. membership about to run out ( and have been getting reminders the last two weeks) and can't do it in the next two IB payments :( .. Looks like i joined the forum on the 30th August but as to when i joined NRAS .. who knows ? It doesn't appear on the profile on the main site .. Could even be the same date . So looks like i will have a holiday from here for a week :)

all i need now is a real holiday ;)
Rich :)