Vasculitis UK
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What a difference a day makes!

My last appointment with the rheumatologist at the local hospital left me, my husband, and my GP very confused, and worried. Despite clinical signs of improvement, I was feeling worse each day, and able to do less and less, so GP was finally convinced and referred me to Addenbrookes. In the last ten days I have seen them twice ....... and finally feel that my questions are being answered, and I am being treated as a thinking human being whose questions need answering, and that i need logical(?) reasons for my symptoms.

The difference in morale, let alone everything else, makes such a difference!

So, please, if anyone is hesitating, worried about their consultant, etc, keep pushing until you find someone who really does listen. It has taken a lot of pushing, a lot of angst, and we're still not really there as there seems to be no way to transfer the scans I've already had to another hospital. But it is definitely better than sticking around and being perpetually worried and upset.

6 Replies

Great to hear you are better treated well at last.


I totally agree with you,it is important that you have a doctor that will take time and answer your questions and concerns. My consultant is very good at explaining everything to me and ensuring that I am happy with his proposed treatment.


I agree too as someone who's had mostly terrible experiences myself. I'm so pleased to hear you're getting through to them. As regards your scans,just in case this may be helpful (ignore it if it's not) you could as a last resort make a Subject Access Request using the Freedom of Information Act (not as hard as it may sound and done more than you think) either for a full copy of all your medical records/notes and any scans and other medical tests and so on or you can just ask copies of the relevant scans for now that you need, so that you can pass them on yourself. I don't understand why it's so difficult though, as I've had scans transfered to another hospital no problem. Your entitled by law to have copies of your medical records but there can be a fee depending on what you want but the most they could charge for the lot, should you want it, is £50 as far as I'm aware. Should you only require the scans and subsequent reports from those then I would think it would be less. I do know people who have done it by the way. You can get the scans on CD's too if you ask. G

ood luck!


Thank you for the advice - really useful.and I will use it if there are still problems at my next appointment. Most of my scans are at one hospital, though the MRA was done elsewhere. The problem with the MRA seems to be more technical, as the two hospitals have different (!!) systems, but I think they will work it out. The others are more of a culture/personality clash I think, so that is where we need to concentrate on getting them so that they are mine rather than just stuck in the system. All very strange; scans aren't cheap and you would think they would want to share as much as possible. I work for an international organisation, and send lots of things to different places in different forms, so don't understand the problem in the first place....


been having exactly the same problems myself and after taking advice and pushing my GP i am seeing a consultant at Addenbrookes in just over a weeks time, incidently i had to request the referal myself as it wasn,t offered to me,but i just wasn,t getting any information or answers that i needed , and i certainly wasn,t getting any better.Hope i can get the same morale boost that you are now getting.


Good luck next week. When I went last week the clinic was busy and staff were greeting patients with interest and enthusiasm. It was such a relief to feel that there was a team working together, and if one doctor needed to talk to another and get advice there was plenty available. But it does seem silly that we have to push for referrals ourselves, and that the consultants in local hospitals don't seem aware of what the team at Addenbrookes have to offer.


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