UPDATE: More than hundred responses! We did it!

[zoe69]

I have posted this before. They have only 28 responses from vasculitis patients, if we want to be seen as a different cohort we need to have 50+ responses.

If you haven't already, here's your chance to participate in the survey:

Rheumatology patient survey from the University of Cambridge and patient groups.

This survey asks about your medical relationships, disease symptoms and mental health. It should take around 20-40 minutes to complete (you can pause or stop at any time). We are supporting this study as it will raise awareness about the areas most important to you and where more support may be needed, but it is entirely up to you whether to take part.

Please read the attached information sheet. If you have any questions, please contact the lead researcher (Melanie) on: [e-mail]

Please click on this link to complete the survey:

bit.ly/inspire_patients

Many thanks for your help!

[Varp]

Maybe holidaymakers have reduced numbers participating this past week? Fingers crossed more fill it in.

It was really easy to do and much needed to raise awareness/experiences for us all to get better future help.

[Starray]

Done. Thanks for sharing.

[Starray]

Can it be shared/posted on the other Vasculitis Facebook pages? This might mean 50 people complete it?

[zoe69 Moderator Volunteer Vasculitis UK in reply to Starray]

I have shared it in those group I am a member. Hopefully we will get the number of responses needed. I will check with the people doing it on Thursday to see how we are doing.

[Starray]

Oh that’s good. I’ve missed it on all of them except VUK yesterday. Hopefully we’ll get 50. It would be great to have Vasculitis counted in. Maybe keep posting it if people are missing it.

[zoe69 Moderator Volunteer Vasculitis UK in reply to Starray]

If numbers are still below the threshold I will repost on Friday. Feel free to share in any Vasculitis groups you are a member of.

[Mooka]

I completed it when you posted it before. I will pass onto the Cambridge support group.

[jgold]

I did this Cambridge survey at first asking, and it was not difficult.

The Vasculitis UK website shows Behcets as a vasculitic disease. The survey lists it as separate from vasculitis. Would it be legitimate to combine them, and would this help reach 50 responses?

[zoe69 Moderator Volunteer Vasculitis UK in reply to jgold]

I saw it has Bechets as inividual disease. I think it is quite complicated. Bechets is a form of vasculitis, but in the rare diseases it is recognised as a disease on its own as well. In Eurordis (Rare Diseases Europe) it is under a different reference group than vasculitis. Unfortunatelly for us in this survey we are looked as a different cohort. I will address it though and see the response from the team.

[May7]

I did this a week ago, as soon as I saw it. It was very satisfying to do, and I was pleased to be able to pause for a break and re-enter again. I too, hope that it is holidays that's causing the low take-up.

[gilders]

When I visit Addenbrooke's I never see a mention of rheumatology, just Vasculitis clinic, so not sure this is relevant for all vasculitis sufferers?? Most of the Vasculitis Drs I see are also nephrologists which is useful for me, having had a kidney transplant due to vasculitis damage.

[zoe69 Moderator Volunteer Vasculitis UK in reply to gilders]

Patients with rheumatological diseases see all kind of doctors. It really depends on how the illness has affected you. There are Vasculitis patients that are under ophthalmology for example, but rheumatologists, nephrologists and neurologists are usually these looking after patients with systemic Vasculitis.

[gilders in reply to zoe69]

Hi zoe69 I was trying to think of a reason why there's not been many replies. I see many different specialist as vasculitis has wrecked my body - pulmonary specialists, cardiologist, ophthalmologist, ENT, gastroenterologist, haematologist, nephrologist (including associated transplant specialists) and likely some more that I've forgotten. But I never get an appointment that states "Rheumatologist". If others are in a similar position as me (i.e. they don't specifically see a Rheumatologist) the first line of the accompanying study leaflet states "Rheumatology patients’ experiences of........."This may make people believe that they are not eligible for the study, even though later in the leaflet it mentions vasculitis.

The other reason for low replies is the length of the survey can be quite long.

[zoe69 Moderator Volunteer Vasculitis UK]

I cannot thank you enough, the responses went up to over 100 in 24 hours!

[eh66]

done