Our next Meeting is on Friday 19th May between 2-4pm in Room 6, Linda McCartney Education Centre at the Royal Liverpool University Hospital as usual.
There will be a Speaker, details tbc. Thanks to Keith for booking this.
Everybody welcome. Let either Keith or myself know if you are going to attend.
Sue
Hi, I'm new to all this. Could you tell me a bit more about the upcoming meeting in Liverpool? It's a long way to get there from where my friend (who might have vasculitis but struggles to get a proper diagnosis n help from her doctors) and I live. What usually happens during those meetings? What would be good reasons for coming along despite the long travel? Thanks a lot!
Hi Poppie we usually meet every 3 months at the Royal Liverpool. There is usually a quick chat & then we have a speaker who gives a talk about a subject relating to Vasculitis. As you can see from the picture, there is quite a few of us. Meetings are aimed at people who have been diagnosed & to help them cope & understand their illness. Whereabouts do you & your friend live & where is she being treated? Sometimes it is hard to get a diagnosis!
Hi Susan, thank you so much for your speedy reply. My friend and I live in Rhyl. She has been seen by an eye specialist here at Glan Clwyd hospital who referred her to an eye specialist in Liverpool. There she saw different doctors each time, all saying something different. One rheumatologist said it's obviously vasculitis and devised a treatment plan but then was overridden by the eye specialist who insisted it's not, though no one knows what it is. So they keep contradicting each other and divise different treatment plans only to cancel them again. The last doctor she saw there insisted that she has a chronic pain problem and needs to take Gabapentin. She kept saying to him that she does not have any pain, only a sensation of pressure around her eye because everything around there is so swollen, but he would not listen to her. She took the Gabapentin reluctantly for a while just to appease him but has come off it now. Otherwise they had started her on high doses of prednisolone (which is now being reduced after stating they overdosed her) and Methotrexate, not knowing what they are actually treating. It's been going on for months and she feels so very unwell. It's all so very frustrating and she has more or less given up hope.... Have you got any suggestions what she could do or where to go to get proper help from???
Hi Poppie sorry to hear about your friend's problems. It is terrible that the experts can't agree amongst themselves about a diagnosis & treatment. I know there are big areas of concern in Wales re treatment but in your friend's case, she has been referred to Liverpool where there are Specialists who know about Vasculitis & there is a Vasculitis Clinic! Certainly the Eye Clinic there has a good reputation as does Rheumatology. Some of our members go these Clinics.
I live in Chester, so not too far from you. It is a long way for you to travel to attend the Meeting if your friend is not sure whether she has Vasculitis.
I think that you or your friend should contact the Vasculitis UK Helpline, as suggested by Lynne(Keyes) and have a chat with them about the circumstances to see what they advise.
If you want to ring me at all for a chat,you can contact me on 07929738947.
Best wishes
Sue
Hi Poppie,
Sorry to hear about your friends story which is unfortunately very familiar to us.
You are welcome to phone or e mail either myself or John on the VUK helpline and we will do all we can to help and advise.
Your friend may need to make a formal complaint about her care to get anywhere, it is completely unnaceptable to have different Consultants saying different things and overriding each other leaving your friend without a treatment plan and definitive diagnosis. Sometimes we need to ask very specific questions, enquire about a Consultants knowledge base and ask for research based evidence for treatment to get anywhere. There are ways to sort this type of mess out so please get in touch.
Best wishes
Lynn
Hi Lynn, thank you for your response. I have told my friend what you said and will now leave it up to her whether she wants to contact you
Best wishes!
Hi Sue,
Christine & I will be there. Look forward to meeting you.
I am currently drafting a letter to Gary Doherty the Chief Exec of Ysbyty Bangor, North Wales to raise a number of issues with him. I plan to copy this to the 4 Consultants involved in Christine's case, our GP & Practice Manager. It will cover what their Vasculitis/Rare decease protocol is, how the hospital/GP interface works and their liason with English Vasculitis Centres.
I plan to couch this as an offer to help rather than a complaint.
John Mills recent article on NHS Wales was a sorry sight. Every medical practitioner in Wales should be given the chance to read this.
May I ask, have you invited anybody from NHS Wales to the group meetings to explain how they deal with Vasculitis and why?
Kind regards, John
Hi John sorry about the delay in replying, we have been away on holiday. Glad to hear that you and Christine are coming to the meeting & look forward to seeing you again.
It's good that you are being pro-active with your letter to the Chief Exec at Bangor. I hope you get a reply & some action.
Yes we were amazed & shocked by John Mills' article in the Newsletter. it shouldn't happen in these times.
We haven't asked anyone from the Welsh NHS to speak at our meetings. We have only had a couple of people attend from North Wales previously. Unfortunately I don't think that enough people would attend if this was the main topic. The vast majority of the people attending are from Merseyside & receive their treatment locally. We try to pick talks that appeal to everyone overall. I understand that Jenny Fulford Brown, who runs the Cardiff Group & is a trustee of VUK, has made a lot of effort to tackle the subject of poor treatment in Wales but has struggled to make headway.
Best wishes Sue
Hope you and yours had a great holiday, Sue.
My letter was sent today.
I agree that an NHS person to speak on Welsh NHS issues on Vasculitis will not be of interest to a NWest group (understandably). I was thinking more to invite say a Bangor Kidney Consultant to talk about Vasculitis and Renal issues (as an example) and start to engage them from this perspective. We can catch up at the meeting to see what you think.
Thank you for the heads up on Jenny Fulford Brown in South Wales. John Mills has also put me in touch with Emma Hughes of Genetic Alliance Wales. I'll await a response to my letter before taking further steps, especially contacting my Assembly Member and MP (who seem to be on busy on Elections at present for some reason!!).
TTFN, John.
Can I put my name down for this meeting please. I was diagnosed with Vasculitis in December following an emergency admission to the Royal Liverpool. Thanks. Mike
hi Susan, when is the next meeting please?
Thanks Sue
Parents meeting at school 
South East London North West Kent Vasculitis Support Group Meeting Saturday January 19th.
