Lots of changes on here over last few days.

[HerThing]

Oh so many changes here over the last few days and we've had lots of gripes. For those that are new to the site and the OC journey, I thought it might be useful to share why we value Ovacome Health Unlocked.

On initial diagnosis of Ovarian Cancer, worlds are turned up side down. I am sure many here will recognise the feeling of being overwhelmed by information overload. For me, as a loving husband, I went through a variety of emotions ranging from disbelief, anger, despair, hope, determination and on and on. The thing was, the information available tended to be clinical and broad. I personally needed more in terms of how this awful disease was going to be combated. I got lucky when Angie found the Ovacome Health Unlocked forum. Here were real people who spoke about the disease in real terms, sharing real experience, both good and bad. It enabled me to understand OC a little better in layman's terms as opposed to the doctor language and ultimately enabled me to come to terms with Angie's diagnosis. When Angie underwent her surgery, I had moments of feeling very scared and vulnerable. Within moments of blogging those fears I received a number of replies offering support and encouragement. I can't express how valuable those comments were for me at that time and for that I will be forever grateful to this community.

Well there you go...That's why I appreciate this community. C'mon, share with us, what is great about being here?

[Hidden]

Hi of course you are right.. this site has been invaluable to us, and we should give recognition to "Ovacome" for joining up with HU to provide this support for us, we must remember that "Ovacome" is a charity and that HU is a business (all beit a worthy one) pure genius on HU's part to start up such a business in the first place, so thank you to HealthUnlocked for your innovation, and thank you to Ovacome (as a charity) for joining with HU to provide this for us love x G x

[HerThing in reply to Hidden]

Hi Gwyn, I agree with you. This facility has been so beneficial to many. The whole point of starting this thread was to give us all the opportunity to concentrate on the benefits rather than dwell on recent issues. They can and will be resolved over time. What's important is that we retain this vital resource for everybody.

Andy x

[Whippit]

I agree that the Health Unlocked site gives us a lifeline. It's a way of reaching out to other people who share the same journey. I've made many friends on the site. People I care about very deeply.

It's been a great help to combat isolation. To start with I contacted members in my own area. Three of us met up at first and that gave us the confidence to start a local support group. I wanted to make sure that others felt the need of this as well as me and to understand what patients expected of a support group. This would not have been possible without Health Unlocked as generally patients in our waiting rooms don't make contact with one another.

Our support group activity has brought us closer to the oncology team at our local cancer centre. In some respects we feel we're equals working on a joint project with our oncologists and CNSs. They've given us a huge amount of support and have been giving out our leaflets and encouraging patients to join us.

Another aspect of Health Unlocked is to effect political change. It has for me highlighted what is available in other parts of the country and how my region compares. HU has given an insight and a power to patient voice which has helped patients lobby for fairer treatment. In particular the Wales and Scottish Governments have agreed to review their drugs fund policies to stop the current postcode lottery to which patients have been subjected over a number of years.

With the news last week that the NHS (England) expects to reduce the number of specialist centres but to develop larger centres of excellence, it becomes more important than ever to understand what treatment you are likely to receive at your local centre and whether you feel the option of accessing treatment at a specialist centre would better suit your needs.

One final aspect of HU that I can think of is that professionals are using this site to analyse patient outcomes outside the medical area. At first I thought I wouldn't complete the new profile detailing diagnosis and treatment thinking it was a bit of an invasion of my privacy but once I realised it isn't visible to members but is used to collect patient data to assist with research I felt better about it and have decided it is a contribution I'd like to make.

I'm deeply grateful to the HU founders for their vision. I was sad to read how much members were upset by the upgrade. It does look a bit different but it would be a shame to leave just because of change. Just think, for new people joining today they are likely to be very satisfied with the site. I hope it turns out to be user-friendly for everyone.

Thanks for uploading up this interesting and thought-provoking post. I'd imagine the HU team could do with a bit of encouragement after all the problems of last week.

[HerThing in reply to Whippit]

Hi Annie, Thanks for sharing this. I think the contributions you have made here have been hugely beneficial, not only to the community, but to the wider fight against Ovarian Cancer. I very much admire your tenacity in moving forward the OC issue with the powers that be, it is efforts such as yours and others, that will effect changes that are sorely needed to the provision of treatment for everyone.

I think too, that it is great that the relationship you have developed with your medical team is excellent and only wish that such a rapport was possible for everybody. One of the things that this forum shows is that we are not all equal in that regard and knowing this encourages people to be more proactive in accessing more suitable care.

Thanks for sharing an interesting and encouraging post.

Andy x

[matt]

Thanks for your support Whippet + Gwyn. Every person working in HU believes we can be an innovation that really does make a difference. Obviously this week it seems far from that but the opportunities in the new platform really are very exciting so thanks for the leap of faith.

I've just posted some tips for navigating the new system.

[Hidden]

Andy, I could,nt agree more. Sandra has found this site invaluable after joining back in March even though she has been on this journey for 4 years. We are no longer alone and the two of us have found great strength from it. We give advice when we can to help others and take on board the many tips and guidance offered from the members. As you say its a vital resource for everybody. Love to everyone Paul and Sandra xx