PBC pathway

[Neata]

Hi all I've meet two very interesting ladies today at the QE in Birmingham

One was Dr Margaret Corrigan and the other a lady called Patricia like me a volunteer with PBC

The PBC pathway was advertised for volunteers in the Bear Facts magazine

Any one interested in helping with a non invasive (no needles or blood !) I can give you her contact details

[Batatis]

Hi Neata,

I am not quite sure of my understanding of your post. Probably because I am not from the same world. Yet, would you kindly elaborate?

Thank you!

[Neata in reply to Batatis]

PBC pathway will be used for newly diagnosed patients to either gp care or consultant care. this would then be used for existing patients so instead of visiting Your consultant once a year or every six months your GP would look after you,the consultant would be used only when needed

This would be used within the nhs here in uk

I've probably simplified this somewhat but if you don't like the idea your feed back is valuable

[Batatis in reply to Neata]

Thank you for your prompt reply and clarification. I would always be interested to know about health plans or pathways even though I may not be entitled to them or rather simply because they do no apply to where I am from. However, I am very fortunate to be a member of the PBC Foundation sufferers as well as to be in good hands in my home town Cairo, Egypt.

[Hidden in reply to Neata]

Hello Neata.

Well I adopted this 'pathway' myself back in 2011!

I started itching early 2010 and ended up going to see the GP after it hadn't let up after a fortnight. Started on the road to PBC diagnosis - that took 9mths - and then at the year mark of seeing the hospital consultant I informed him I no longer wanted to keep going to see him, at the time I couldn't see the need. We had a brief discussion and he agreed with my views and said that he would discharge me that day on the understanding the if needs be in future I would return to see him. This is now over 3yrs ago and I feel I am far better with the PBC than back in the very early days. My LFTs on a last check 6mths ago (just had repeats this week), they were pretty good.

I have no other symptons of PBC except for the itch that is at night-time (wasn't back in 2010). Fatigue I had back in 2010 left me at some point in 2011.

I think from experience over the last 3yrs with a few GPs you can find that some of them do not want to take it all on board. I switched GP surgeries 2yrs ago now as I found the one I was with, the GP I was registered under who I was unfortunate to have to see as he checked the bloods (and who I didn't know prior to PB diagnosis, I rarely went to see a GP pre-2010), he seemed to get agitated when I asked questions and it came across to me as, "I'm the doctor, I should know". I have to say for myself I do like to know things and what is going on. I am of the mind that if you don't try to find out simplified terminology and ask questions, then you can't try to help yourself.

The current GP I had to see with the PBC, a female, she seems OK but I think she is more than likely going to insist a hospital referral if I ever do have even the slightest glitch. I do think GPs often feel more comfortable with a patient having out-patient appointments with certain conditions as it then relinquishes them of certain responsibilities which in a way is understandable.

My view here is that if a patient with PBC feels they are getting on well, as in my case, with no other symptons that have developed it is really a case of the GP scrutinizing the bloods each time and acting upon those alongside this.

I would be interested to find out how this 'pathway' goes as I do think that patient input can identify pros and cons of certain new ideas/schemes.

[CathieG]

Hi, I would be interested in any research being carried out but I would have to know a lot more about it. Can you send me her contact details please. My email is [e-mail].

Thanks.

[jennyhall06]

Hi, I might be interested, could you send me further details please.

Thanks Jenny

[June9961]

Hi, i am interested but maybe I am too far away

[cowre]

Hi I would be intrested I live in south Wales x

[crundalite]

HI Neata,

Diagnosed some 21 years ago it is probably too late to consider pathways. At present I am travelling bi-annually to QE Birmingham for bloods +ultrasound from my home in South West Wales. I have been 3 times so farseeing 3 different consultants but get the impression that no-one really knows why I am there. I see a consultant gastro locally who provides me with continuity although appointments sre erratic apart from regular (at present) endoscopies resulting in banding of varices.My GP has no idea as regards PBC and on a fairly recent query about varices stated he had no knowledge on this subject. He has always refused to do regular bloodchecks believing these are the province of the hospital. I am 69 and have always been active and enjoyed my life, regarding any form of illness as an inconvenience to be overcome. I am open to research and trials but feel that any involvement of GP's would require further training that not all would be willing to uindertake.

[Neata]

[e-mail] is Margaret's email address

PBC pathway would see some who visit hospital being handed to gp care and those that needed treatment sent to specialist,obviously there is more to it but she needs feed back from more than just the two ladies that turned up

[Hidden]

I would truly worry about my particular Gp taking this up, he is supportive but has admitted he knows nothing about Pbc. I will send my feed back.. is there a web site for this pathway.. if it was in the bear facts magazine i am not sure how I missed it, so thank you Neata.

[Neata]

Yes it was in the bear facts,I've put the email address I have on previous post,I'm pleased that some are reading this