Worried!

[CathieG]

I've just moved from West Yorkshire to West Sussex and while in Yorkshire, attended the liver unit at St James hospital and really happy with the care. Now I have just received a letter from Surrey and Sussex hospital saying that I have been referred to a Gastroenterology Consultant?? I'm sure that this is a waste of time or am I dreaming that someone else on here had this issue? I missed my July appointment because of the move and want to see the right person. If I should continue to be seen by a hepatology department should I speak to my GP or wait until this appointment with the Gastroenterology department ? Im on 1000ml of Urso daily and already my system is upset because my band has been changed, feeling very low at the moment and don't want to worry the family. Any advice would be appreciated.

[Chazzy]

Hope your ok xx

[Hidden]

Hello CathieG.

When I started itching early 2010 and was referred to a consultant many months later that led me to be diagnosed with PBC (December 2010) I was referred to Hepatology but at my local hospital it is all branched together under Gastroenterology. They hold various clinics on different days I found. When I went it seemed that it was all hepatology and I did see a consultant who dealt with liver issues. He said he gave talks to GPs on PBC as a lot weren't familiar at all with it.

I live in Lancashire and one of the Lancs hospital is hooked up with a liver unit offsite, they use video links apparently.

Personally I think it might depend on how we are really doing with PBC. I was informed that although I was under a certain consultant at times when I did go (I asked to be discharged later 2011. Consultant discussed and agreed with the condition in future if needs be I'd be referred back. So far so good), I might see a colleague of his which would more than likely be a gastroenterologist.

Under the NHS we apparently can choose a hospital to attend if they have that specific field they would be dealing in for a patient. You might want to do a bit of research (you can under the NHS sites) and if so, pop along to your GP and maybe have a discussion, see what you can do. I know when I required an ENT appt a few years ago I did some research and found other hospitals that dealt with ENT as I was not impressed with the local ENT in the health centre in town (they were limited to what they could do) so went and asked specifically for another Lancs hospital that did have an ENT outpatients. It was a better setting for me and if need be I would return there.

Or the other option is to attend the appt and put across your questions there and then.

If it persists with the urso your side-effects then if possible it might be worth returning to your GP and ask to have the prescription written out with the actual brand name on. Explain why. I was given generic urso a couple years ago when some I had been taking from 2010 were withdrawn. I had been given a brand on my first new replacement prescription and had no problems but when I got some more I was given generics and asked why. I was informed that the prescription had always been written generically - 'ursodeoxycholic acid' with the mgs - so a pharmacy can give you any they have whether it be generics (cheaper to the NHS) or a brand. I had side-effects that persisted with my replacement generics so asked my GP to write me a brand I'd had first for replacement as had no problems. I receive the brand written prescriptions each time now.

[teddybear7]

I'm in north Yorkshire & never seen a heptologist. It's just a gastroenterologist that you see.

[Chrisprio]

Hi CathieG,

Just a thought that it might be good to talk it through with the PBC foundation. They will know the hospitals in your area and the options available.

Wishing you well, Cx

[Howard_Sherwood]

In my experience, the departmental name (Gastro-enterology or Hepatology) depends on the administrative structure of the hospital/NHS Trust that you are attending.

I attend the John Radcliffe Hospital in Oxford which is part of the OUH NHS Trust. I am seen by a consultant hepatologist in the Gastro-enterology Department. For some time I was slightly anxious that I was not referred to a named Hepatology Department, but now recognise that if you have liver disease you will be seen by a clinician who knows about liver disease, irrespective of the department they work in. Also, the knowledge-base and experience shared by hepatologists and gastro-enterologists is both complementary and common – the liver does not work in isolation and its disease often affects other associated organs.

I'd advise you attend the Gastro-enterology Department and ask about who you could see for your condition. If you are still unhappy, ask your GP for a referral to another department/hospital.

[GrittyReads]

After bad experiences with a hepatologist with little PBC experience, I saw a leading PBC specialist - but that was because I had initially been given a bogus diagnosis. I know from many of the posts on here that loads and loads of people are perfectly happy and well-treated by their gastros, but it can vary.

I agree with Chrisprio - above - maybe talk it through with the 'PBC Foundation' (link at the top of the page). Or you can Google the hospital you are being sent to. You should be able to search through all consultants - gastros, hepatologists ... all - and read what their specialities are. If there is someone with PBC experience, you could ask to see her/him.

You could also put another post on here, saying in a bit more detail which cities/towns you are near, and asking people to 'private message' you [that is, the posts go direct to you and don't appear for all to read on 'Health Unlocked'] with advice on who they see and recommend. This needs to be in a private message, as I think Charities like the 'PBC F' are not supposed to 'name, names' on here.

If you find someone you like the sound of, who is close enough to travel to, you can ask your GP to see them. You have a 'right' under the NHS... [for as long as we still have the NHS, that is!] to see any specialist, although all this may hold things up for you, a bit. I travelled half-way across the country to see my PBC man, but it was well worth it.

Hope this helps, take care.

[Mole]

I live in East Sussex. The local hospital has no liver specialist. I asked my GP to refer me to King's College Hospital in London which has a big specialist Unit. I'm very happy with my care there. Mind you, I can't say that my care would have been any worse at the local hospital. Personally I feel reassured by being cared for in a specialist centre which out ways the faff of travelling up there.

I would talk to your GP. But I would certainly recommend King's College Hospital as an option to consider if you're in West Sussex.

[Pange]

I also live in East Sussex. My GP refused to refer me to a Consultant, saying they would monitor me themselves. I have yearly blood tests and having lost nearly 4 stone with Slimming World, all my reading are lower but still raised. I'm not happy about it. However as there seems very little else that can be done other than taking URSO l have accepted the situation. Be happy you have an appt!! lol. Good luck.

[CathieG]

The new GP i saw was happy to refer me to a consultant. Hes aware that PBC is way outside his field of expertise and cares about his patients. I would have changed my GP if he had refused. The consultant in Leeds told me that when i registered with a new GP, the first thing i had to ask for was Urso and the second thing was a referral to a specialist unit. Your GP must know a lot about PBC. Have you asked?