check up

[Jnuttall]

not had a check up in two years? Should I get in touch with my gp Or hospital?

[butterflyEi]

Your GP can run blood tests for you. Across the NHS system care is so different. Some are seen annually but like you I have not seen a specialist since before COVID but I have had a telephone consult about 2 years ago however I rang the consultant's secretary and have an appointment next month. Hope you get something sorted soon.

[DonnaBoll Administrator in reply to butterflyEi]

Hi! This is Donna. I started facilitating the group today. I'm trying to understand how the NHS system works as I live in the US. Do you not see a hepatologist who oversees the care for the PBC there? Sounds like visits with a specialist are not very frequent there. I would have to question a GP's knowledge about this very complicated disease. I appreciate any help you can give me in this process.

[butterflyEi in reply to DonnaBoll]

Hi DonnaBoll it can be difficult to understand the NHS system which of recent has become over burdened with what I believe to be an ever increasing population, aging population, poor management and overall Government mismanagement.

Like America there are guidelines yours I believe are AASDL this side of the pond the title is EASL Guidelines.

I do see a hepatologist as there is a large hospital within travelling distance however there are smaller hospitals where someone with PBC may be seen by a gastroenterologist and others who are not symptomatic who will be cared for by their local GP services. Some people will report that they are seen every 6 to 12 months but others like myself who are managing the condition well will usually only be seen annually however since COVID there seems to have been more problems getting to see a specialist. Others on here who live in the UK may have different experiences.

congratulations on your position of administrator, this page on HU is a very useful resource.

[DonnaBoll Administrator in reply to butterflyEi]

I really appreciate what you told me about the NHS there. If this is the case, I certainly see how much your own knowledge about PBC is needed. Not seeing a knowledgeable physician who really treats PBC on a regular basis seems to be what's happening there. I will do my very best to give you links and any information I have to help. Thank you for reminding everyone about the EASL Guidelines. They give you a sound basis for what care you should be receiving.

[DonnaBoll Administrator]

Hello! This is Donna. I just started facilitating the group today. Although I live in the US, PBC patients see their hepatologist every 6-12 months on average with lab work recommended every 3-6 months according to the Standard of Care for PBC. In the UK do you see a hepatologist or does you GP manage your PBC? Going more than a year is why too long.

[Jnuttall in reply to DonnaBoll]

Originally I was seen every 3 months then 6 months that turned into a yearly visit but unfortunately due to the nhs being so overrun I’ve not been seen for two years, I have just rang my GP for advice so will see what happens

[DonnaBoll Administrator]

Absolutely! You should be seen at least every 6-12 months with liver enzymes checked every 3-6 months. Glad you asked about this...

[Jnuttall in reply to DonnaBoll]

Thank you I will ring on Monday and see if I can get an appointment

[DonnaBoll Administrator in reply to Jnuttall]

Did you get an appointment?

[Jnuttall in reply to DonnaBoll]

Yes I rang the hospital and they said I should have been seen last year !! But I’ve got one in April thank you ☺️

[DonnaBoll Administrator in reply to Jnuttall]

Great!!! I forgot... have you been getting lab work done all this time?

[Jnuttall in reply to DonnaBoll]

No nothing at all ☹️

[DonnaBoll Administrator in reply to Jnuttall]

Ugh!!! I am so sorry to read this. Everyone who has PBC needs to be on Urso as soon as diagnosis is made. So many GP docs really don't know about or how to really care for someone with PBC. How are your liver enzymes blood tests? Maybe see a hepatologist if at all possible??

[DonnaBoll Administrator]

Lab work should be done every 3-6 months according to the Standard of Care. Make sure he orders liver panel as soon as possible. Vitamin levels and thyroid function too. All necessary to make they are ok.

[Jnuttall in reply to DonnaBoll]

Thanks for all your advice I appreciate it.