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Discussion Starter #1
Someone advised me to post in here to see if anyone can recommend a good lupus doctor / rheumy specialist in Somerset. One of the GP's at my surgery is pretty good but she is not my GP, and I have only seen my rheumy doctor once and she wasn't that helpful so next time I need to see some I thought I would try to see someone else.

All suggestions gratefully recieved!

Claire
 

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Discussion Starter #2
Well thought I would give you an update

I wrote to my GP surgery requesting I change my GP to someone who I can actually talk to and who understands lupus and it's intricacies, and to their credit they have changed me to the female doctor who got me diagnosed.... She is great, she understands but takes no messing. Just the kind of Dr I need... She also got my employers to reduce my hours. So to anyone out there who has had similar problems.....there is hope!

I feel like I should buy the practice manager some flowers or something!:)

Claire
 

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Well done Claire!

Sometimes we just have to stick up for ourselves - it's our health afterall and we deserve the very best of care.

love
Lily
 

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Yay Claire, that's great news, well done you!!!!

I'm so glad that you got that sorted, I think it should make a big difference to you :)

Katharine
 

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Discussion Starter #5
Thanks Katherine and Lily

I am hoping that things will get better too

Claire
 

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Dear Claire, When you go buy flowers, buy some for yourself too, for taking the initiative.

There used to be a good Rheumy Doc. in Taunton but I don't know a name.
I can try to find out, just give me a bit of time to try to contact a upie friend.
xLola
 

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Discussion Starter #7
Thanks Lola

If you could find out that would be cool as my hospital would be Taunton too.

Cheers
Claire
 

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Hi

I am also looking for a good rheumy in Somerset -I 've heard that there is a good one in Bath. Anyone got any ideas?


Tine
 

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Discussion Starter #9
Bath has an excellent rheumy department so I have heard, they also have a specialist nurse there too Sister Sue Brown. Unfortunately it is a little too far for me to travel! You might want to contact Lupus UK they do meets there every so often they may be able to give you more information about the RUH! If not private message me and I will phone one of the local contacts for you if you like?

Claire
 

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Hi Claire
I am in Somefrset too and attend Taunton Hospital although i wish i didn't.
The rheumy department there is in such a mess that my gp is no longer referring patients there and believe me he had too kick up merry **** to get me followed up and diganosed.
I would definately advise that if atall possible you attemt to get seen at another hospital. For your own sake and to stop things dragging on and on.
My gp has again had to contact my consultant there regarding my steroid reduction or stopping t and starting my methotrexate before i come off of the steroids, he started calling last Tuesday, he has left 2 messages with his secrectary, has sent 2 e mails and left 1 message on his mobile phone and still no response.
I was diagnosed with MCTD 2 mths ago after waiting 4 mths to go back after my first apppt as my follow up was cancelled.
I was in for 20 mins given no info about risk factors or prognosis of the disease or even told exactly what it meant. I had no opportunity to ask questions.
I was sent off for more tests and with a plan in terms of medications and was given a follow up in Feb 09. This is despite being on loads of tablets and suffing a lot form my symtoms to the point where i 've actualy been registered disabled.
I am only telling you all of this Claire as all this has been difficult to deal with on top of being very unwell and i would say that the above are very strong reasons to be seen somewhere else.
As far as i have been told the department is short staffed and tthere are funding issues wtih the nhs trust and that is why things are in such a mess.



Good Luck
Take Care

Cassie :)
 

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Thanks for the warning Cassie - I am not surprised to hear about your experience at Taunton.

I also have had some really bad experiences at Musgrove, mine were not in the Rheumatology department but in A&E, Cardiac and the Respitory clinic(SP). I don't think I should go into details here as others may well have positive experiences but I personally would not recommend anybody go there if they had a choice. My feeling is that even if departments are underfunded surely as human beings we are entitled to be treated as people with feelings and concerns rather than inconveniences.

Sorry to rant but I feel so strongly about the appauling way that I was treated there - I am still traumatised two years on. Hence my asking about Bath.

Please remember that everybodys experience is different and I 'm sure that there are people out there that have nothing but praise for their treatment at Musgrove. I would hate to worry anyone getting treatment there I just felt the need to pass on my feelings.

Tine x
 

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Thanks Cassie and Tine

I was lucky enough to go to the nuffield for my initial consult (she does consult an MPH too) and haven't seen my rheumy since. I wasn't overly impressed with her to be truthful as she answered her mobile mid examination, and on her letter to my GP said that I don't get mouth ulcers (which I do). I also had to keep phoning her secretary for results. She went on holiday shortly after I saw her (easter) didn't get the letter confirming dx until the end of June begining of July 2007. Not good for private really!


I have the choice of 2 hospitals MPH and WGH and MPH is the lesser of the 2 evils. I have heard mixed reports about MPH but on the whole they had been pretty good (until now). Maybe it would pay to travel up to Bath to the RUH!

Claire
 

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Hi All,
i realy wouldn't want anyone to worry but i just felt i had a duty to inform people of what i knew about the state of the department there and that unfortunately this is affecting patient care.

I f i had known this before my refferal i think i definately would havre taken other steps in terms of seeing a rheumatologist.

Now i am just awaiting test resuts and then am going to decide what to do, i actually feel like making a complaint not just for my sake but for the sake of others.

I agree doctors shouldn't just see patioents as numbers or bits of paper or inconvieniences and any doctor who does shoould be challlenged and humiliated.

Sorry for rambing.

I have looked at Bath on the net before i think you can give them a ring and discuss things with them over the phone. Thats the only thnhg though isn't it travel. I thnk its definately worth having a chat to them though.

Good Luck

Take Care

Cassie :)
 
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