Some good news. . .: Kngs hospital... - PBC Foundation

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Some good news. . .

gracesofia profile image
9 Replies

Kngs hospital. . . Amazing team of specialists. Had my first appt yesterdsy with top lead clinician in auto immune diseases and for the first time since being diagnosed I felt somebody was listening to me and to talk to a consultant who knows about pbc was like a weight off my shoulders. My consultant in local hospital is so condescending its untrue knows nothing ahout pbc so to talk to kings team was so so good snd answered all my questions gave me fantastic information and generally reassured me ........ then said continue how you are live your life to the full........ then. Said I donnt want to see you again in a nice way lol and to go to my gp and if I need to in the future just come back!!!! How happy was I, feel like a ton of weight has been taken off my shoulders and I am actually smiling. Just had to tell you my news. X

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gracesofia profile image
gracesofia
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9 Replies

Those doctors, without knowledge, who cover their butts by spouting nonsense and have condescending attitudes should be reprimanded and forced into further training in order to keep their licenses to practice medicine. They create unwarranted fear and discomfort in their patients. I am thrilled you have had a positive experience and can relax a bit and carry on with your life without fear. Peace of mind is worth more than all the riches in the world. Best regards, Judi

Magnolia profile image
Magnolia

Gracesofia, so glad a burden has been lifted for you! Even a small problem solved makes you feel as if you have accomplished something. I know what you taking about, for years ago, I like to have never got my GP to do something about my high LFTs and send me to a specialist. I was under a POS insurance, and had to be referred at the time.

Magnolia

gracesofia profile image
gracesofia

Thank you judi and yes I couldn't agree more peace of mind is definitely worth more than all the riches in the world and until something like this happens to you you just dont realise it x

mumofthree profile image
mumofthree

I am so thrilled for you all you need now is a GP with the same positive attitude.

LindaRose profile image
LindaRose

Delighted that King's came through for you, I have been with them for 18 years and they are terrific, but then they are the number one liver unit in England, so they should be fantastic !

keep that feeling ...........

I have recently switched GP surgeries so hopefully not out of the frying pan and into the fire.....

Like you gracesofia I can return to the hospital to see the consultant if need be in future. I didn't like the bedside manner of the hospital doctor but at least he did know a lot about PBC and even does lectures to GPs. He mentioned this. He didn't bat an eyelid back in late 2010 when I mentioned how fatigued I had felt throughout that year. When I returned after he sent the diagnosis to my GP to inform me initially, he was the one who spoke more about PBC then and it was he who told my husband that some patients with PBC can end up being put onto a transplant list as I'd missed this bit out when I had mentioned I thought I could have PBC to my husband several months prior.

It was myself who asked if I could be discharged after attending a year to see him three times. The bloods had started looking good and at the time I couldn't see a point in trekking to the hospital other side of town for what I was attending for then.

I find it is the GPs who are the worst culprits. If they took even a little time to have a read up on PBC and take more note I'm sure one would feel far better. Unless it is that ideology of at present nothing can be done for patients with PBC so their interest wanes somewhat? Or the other idea that they would rather pass the book and leave a patient to the hospital to deal with regardless of whether that too is of much use.

I know if I lived in Leeds perhaps where there is St. James who has a LIver Unit or Birmingham for eg where there is also one, I expect I would probably have gone there as a patient but unfortunately they are typically lots of miles away.

Lisacj profile image
Lisacj

Such good news gracesofia, how wonderful to be listened to and not patronised. My GP says she know's nothing and appears not to care and shows no interest.. I am going the the Brompton hospital this coming Monday to see an immunologist so I have my fingers crossed for some real help. I am trying not to pin too much hope on the appointment.I have bronchiectasis and am lucky to have a great consultant for that who has done more to help me than my PBC consult or GP. So thanks to her I may feel some of your happiness too.

Best wished to all my PBC mates xx

Junolee profile image
Junolee

I have to say both my GP and consultants at the local hospital have been brilliant can't imagine what it must have been like for you. So happy that you are feeling a bit better about everything. Take care x

riada profile image
riada

I'm so pleased for you. The only reason I talk to Kings is for transplant.! So go for it have fun !

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