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    LUPUS UK
    20,854 members • 16,555 posts

    Not sure what to do now? Stay with local hospital or move?

    I asked my GP to refer me to Leeds as I did not feel my local hospital were looking after me. I never saw the same person twice and although I should have seen a consultant in March for which I got a letter asking me to make an appointment they could not give me one as no staff.

    I applied for PIP and rang to ask if I could have a copy of my lung function test, told no. It was then in May that the secretary said you were due to have another lung function in March, so I will get the consultant to look at your file. I have since had a letter asking me to go for a lung function test and a form for more blood tests. I have now had my repeat lung function test, similar results to before and my + Panca has come down, I am on Azathroprine. Plus an appointment 12 months from last one.

    My thinking now is should I stick with local hospital who now seem to be doing something? Or Give Leeds a try, I now have an appointment for the end of August? I understand that Leeds is a centre for excellence for AI illness . At the moment I am down as UDCTD and Raynards.

    Confused.com

    4 Replies
    oldest • newest

    Hi gym babe when u say leeds I take it u mean chapel Allerton ? I am treated there and although top class team unless ur very ill appointments are few and far between, 2 hr waits at times In clinic, u rarely see the same dr twice it's whoever picks up

    Ur file that day, and the lupus nurse retired and hasn't been replaced as far as I know so it's a gamble, where do u go at the mo?? Xx

    Reply

    Yes it's Chapel Allerton, picked it as I had heard good reports? At the moment I go to Huddersfield. I am on Azathroprine and have 3 monthly blood tests. I seem to be getting worse but they don't seem to have time for me. Spent 18 months being told it looked like MS only then to be sent to Rheumatology. Am confused and scared, I'm 44 years old and struggling with daily life, it's a good job my children are teens and can fend for themselves, although I find I am asking them to do more and more. My husband is good, but works hard as I am unable.

    Reply

    Bless u, I know it's a scary and confusing time, prof emery and team are fantastic it's just the waiting lists and times that let it down, they are a great team, I use to live in hudds and gave birth to my daughter now 16 in the royal infirmary, so u dnt have a def Dx of lupus? Hopefully in August they will offer u more of a insight, it's good u have support around you,I wish u all the best,who knows u could go on quiet day, I go to the kidney clinic days, they are very busy, take a urine sample with u as each time u go they weigh u blood pressure and urine, make a list of questions you want to ask them, let us know how u get on

    I am also on aza but have monthly blood tests due to low blood counts xx

    Reply

    Hi, you don't need to leave the hospital/consultant you are with at the moment you can just ask your Gp to refer you to Leeds or anywhere else you fancy for a second opinion and then decide which you would prefer. I was referred to a different hospital Trust for a second opinion a couple of years ago as I wasn't particularly happy with my local hospital consultant or the support service on offer and really didn't feel I was being taken seriously. I didn't cancel my further appointment with him until I had been referred and seen someone else and found their approach and support service was so much better. I didn't give a reason for cancelling with my previous consultant either I just rang the appointment desk and said I no longer needed the appointment, so if you are questioning the service you are receiving and need something to compare to then go ahead and ask for a second opinion, it is so important to have trust and faith in those who are responsible for your care and ideally you should feel they are easily approachable and accessible between appointments in case of any problems or queries .xx

    Reply

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