VUK are collecting personal stories

[John_Mills]

We ( Vasculitis UK ) are collecting short stories to include the following:

• Multiple specialists – good or bad experiences

• Travel time problems

• Coordination of care – experiences of lack of communication

• Confidence in GP/Care Plan

I • Specialist nurse – good or bad experiences

• Disease impact on mental health

• Disease impact on physical health

• Disease impact on social health (relationships, friends, family etc)

The stories must be short or bullet points , please send to me :- [e-mail]

Some of your stories will be put into a document ( anonymously of course ), to be presented to the Department of Health.

VUK are at the moment, working with other organisations to produce a document to highlight the problems and obstacles patients come up against when waiting for a diagnosis of Vasculitis and or it’s treatments.

[ludo]

Diagnosed with GPA by ENT but transferred to Chest consultant when lesions on my lungs were found. He had no experience of GPA and through my own research I realised I wasn't on the correct treatment. The consultant was very reluctant to transfer me to a vascultis clinic. It took me 3 attempts by which time my bloods were of the scale. without the support group urging me I probably wouldn't be here today.

[wobblypat]

I suffered the best and the worst of the NHS. One particular gripe is that many of the doctors treat my various problems as individual ones, rather as interrelated. For instance, because of my CNS Vasculitis, I had compromised balance, so initially I fell frequently, breaking and dislocating bones and joints. This. And the drugs I was taking made matters worse and I I finished up with two new shoulders. Even then no account was taken of my balance problems and exactly how helpless I was.

I found hard to stomach the idea that I wasn't sick!